Wowza! Fast forward to 2020. Somehow, someway, I am still here. I got more than five years out of lorlatinib but had to combine it with chemo last fall (carboplatin and alimta). Not I am in my fourth phase I clinical trial for a novel therapeutic that is mutation agnostic, call DS-1062. It is a trophoblast cell-surface antigen 2 (TROP2) targeting antibody drug conjugate. Although not cancer free (never been NED but Not Dead Yet, as I like to say), I am living la vida loca. Making art, writing, advocating and activating for other cancer patients and going on adventures. Loving life and happy for every moment longer I get to stay.
The video is old—but a goodie so I’m hanging onto it. Enjoy. ❤
Wow! Great site and writing! Put me on your update mailing list if you have one. Now get painting! <
Thanks painting buddy. I’ll have to ask somebody really smart, like Jemesii, about how to do a mailing list. art to you too, Linnea
God Bless you Linnea! I have a friend going through this now and wish she could read your writing! You are an inspiration and a treasure! Sending prayers and hugs!
I’ve read it all and understand most 0f the scientific stuff.
it’s funny, I’m sure I’ve seen this picture of you in a magazine somewhere–and you do look beautiful.
Miss you already
Katherine, you are a true friend to have slogged through it all already. I am uber impressed that you understand it all–some of it became clear to me only after studying some graphics and writing about it. I miss you too! Linnea
I think I should have said “some” in really small letters instead of “most”.
I’m mailing you something this week
Hello Dear Friend,
What a beautiful website!
See you soon.
lets keep getting better and better
Life is good!
Thank you Jose–good friend and MGH Cancer Center Employee of the Year winner! Linnea
Linda, I am working on a new project that I am very excited about. I am writing a book about the cancer blogging phenomenon – its scope, aspirations, and reasons for being. I plan to highlight some of the best writing from our blogging community.
As I have previously published your writing in my weekly Guest Post feature at Being cancer, networking people transformed by cancer, I am hoping to get your preliminary permission to use some of your material in the book. I will, of course, give full credit as well as link information. I would also like to arrange for all contributors to receive complimentary copies.
I have not yet secured a publishing contract. But I want to get started compiling some chapters prior to submitting my proposal to a publisher. So if this sounds like something you might be interested in being a part of, please contact me by email. I will be able to tell you the specific posts I am interested in. Please include off-blog contact information.
Dennis W. Pyritz, RN, BA, BSN
Dennis, I sent you a response via email but I just noticed that your comment came through at 11:11. That’s my lucky number! Auspicious, no? And it’s (I say this gently) Linnea, not Linda. ciao, Linnea
I read your site a lot. I am in the same situation as you. I have NSCL stage V at the age of 29. I also have a blog but it is in Dutch. (blog.carosum.com) I want to let you know that I get inspired by your postings and will keep on following you as long as I am able to.
Lots of power, love and respect,
Caroline, I am so sorry to find you in this situation as well, but glad that you have reached out to me. I checked out your blog and did a google translation, which is a little rough, but did let me know what you were talking about. The videos are great and need no translation. I cried when I watched the one of you on the climb–you are incredible! I am going on a little mountain climb with my son’s school in two days and I was a bit nervous that I wouldn’t be able to keep up, but you have inspired me. I also can’t believe how faithfully you post (almost every day) and I will be reading yours as well–also, hopefully, for a long, long time. Stay well and strong! Love, Linnea
linnea, you are a pure inspiration. simple reminders throughout the days remind me of you, your power and the grace you carry yourself with as you travel through your life. i feel honored to be part of your life. you are very brave and i wish i had a third of your bravery. to put it bluntly, you are an amazing person.
i love you, z.
I don’t know what to say Zo, except thank you so and right back at you. I am exceptionally proud and pleased to be your aunt. Love you tons, Linnea
Linnea/David — So great to see you guys and to share our experiences. Let me know your email so I can send you my cancer article. Our sailing blog is at http://www.sailCatharsis.com
Great to see you too Harvey–keep up the good fight. Linnea
Dear Linnea i just got your comment on my blog and i wanted to mail you. have you got a personal emailadres? I have been tested for mutations directly in the beginnning and my first line therapy is therefore Tarceva tthe targeted drug whicj really works for me , a dramatic response. I have an EGFR-mutation. Hope there will be trials for the mutation because some they i will get a resistance. If you want to know more i would like to mail in personal (my mail: email@example.com
Thanks for your message Linnea. I was thinking of you recently too, sending you the best. I will keep in touch about what happens. Heather
Hi Linnea! I am also at the same situation as you are, having diagnosed of Bronchogenic carcinoma of the lung stage IV really need to hear an inspirational message from others to boost my own morale. Please guided me as I guided you, Thanks!
Hi Linnea – we met years ago at a musical charity event in Mass. I was the mandolin picker from Axcelis who kept dropping his pick. I heard from Pino about your experience and am so very happy for you, David and the whole family. I stumbled onto your blog quite by accident in a search about Tarceva.
I wish you continued good health and happiness.
Michael, good of you to leave a comment; and there is nothing wrong with dropping your pick so long as you keep picking it up again. As I recall, it was a lovely concert.
David is going to send you an email–I wish you health and happiness as well.
I just found your website after clicking on your picture in the gallery on the NY Times website. I recently started my own blog and am dealing with advanced prostate cancer…..I am trying to find my own voice in my own blog to provide a voice as you do so well…I will keep following.
David, thank you and best of luck with both your blog and your cancer journey: I will check in on you as well; strength in numbers. Linnea
Hey, supermodel! Your photo in today’s New York Times (April 27) just jumped out at me. Even if I hadn’t recognized you, my eye would have been drawn to your picture immediately. I know it’s a roundabout way to start a modeling career, but it’s never too late, right?
Doug, roundabout alright. Hey–we got your post card and can’t wait to get your new book. At some point I’d like to get an autographed copy for Peter (who just read Romeo and Juliet in school)–I am starting a collection of first editions for him and signed is even better. Figure I better better do it before you are so way famous I have to stand in a long line. I’ll look for your book at our local bookstore (a good one) and if they don’t have it, I will request it. Say hi to Coco and the boys, Linnea
I’m so happy I found your blog!
I have also been operated on for lung cancer – my left upper lobe was removed in December 2007. Adjuvant chemo folllowed (no negative side effects to speak of) and I have just had a thorough check up with flying colours.
When I was diagnosed, I also found that there were very few who had written about lung cancer in this manner – your blog is important for that reason alone. Not to mention that it’s so well written.
Trudie, Thank you for your comment and congrats on your positive check-up. My blog has actually helped me to connect with so many others with lung cancer, and I have found that incredibly empowering. Keep in touch, Linnea
My husband who is now 53 has stage IV adenocarcinoma with BAC and was diagnosed in July 2006. Seems as though we are walking a similar path. Are you in Boston at MGH? We are at MGH with Dr. Jennifer Temel previously we were a patient of Dr. Tom Lynch who now heads up the Yale Cancer Center. My husband has undergone VERY RADICAL treatment both with surgery and chemotherapy. You can read about our journey at http://www.carepages.com and search SteveRowe all one word. His surgeon is Dr. David Sugarbaker. I am looking forward to hearing from you-who knows maybe we live close to each other or maybe if you are at MGH, we have actually passed by each other in the hallways!
Leslie, our paths are more similar than you know. Dr. Lynch was my oncologist as well; now it is Dr. Alice Shaw. I am at the Yawkey Center at least once a month and generally on Mondays. I would love to meet you both at some point and I will check out the carepages site. I’m glad you reached out. Linnea
I love your blog. You write beautifully and I am inspired by your writing and photographs. I am a 41 year old never-smoker and was diagnosed with stage IV nsclc in August 2009. Adenocarcinoma with BAC features. I’ve been on Tarceva ever since and things are stable. I’m intrigued about the ALK trials going on and your video (especially the before/after scans) was great to watch. Your blog is very informative and I can’t wait to read more.
Diane, Thank you for your comments. That is great that you are stable; it is also good to know that there will be more options for treatment should that change. A lot of progress is being made and lung cancer in never-smokers is at the focus of much research: so very different than the situation five years ago when I was diagnosed. So hang in there and thanks again. Linnea
Do you believe in fate? After reading your response I truly do because we are at Yawkey on Mondays as well! Steve’s treatment consists of 2 weeks on and 1 week off. This is our off week, so we will be at MGH on Monday June 14-any chance you have an appointment that day? We would love to meet you! Do you live in MA? We live in southern NH. Looking forward to the day we meet!
Leslie, I will be at the Yawkey on the 14th. I believe my labs are at 9am and I have appts. off and on until 2:30. I would love to meet, what time will you be there? BTW, I live in NH as well 🙂 Linnea
Oops! Meant to say I expect he will NOT need another transfusion by then!
I wrote to you a couple of weeks ago and hope you got it. Thought I’d write again —
Georgia turned me onto your blog and I love it. You write so beautifully.
Tomorrow I am delivering a seminar to all the science communications team at Cancer Research UK on how to write better about cancer (for funders and donors). Cancer Research UK is the biggest cancer research charity outside the US and our very biggest charity. I love them – they do a great job – and I feel I have little to teach them. But I will tell them about your blog. I am also showing them a brilliant article in the Economist which mentions a trial for ALK lung cancer cases (the one you are in??) which is so full of hope. People are fighting so hard against this horrible illness — surely we have to beat it soon? And meantime… I wanted also to say how beautiful your paintings look. In fact…. I’d love to buy one…
You look wonderful too.
Enough for now _ Georgia has gone back to the US from a brief visit happy and calm. I can see from your blog that Jem is an amazing young woman – are you proud?
Write if you can and hugs and love – Liz
Liz–I did respond to your last comment–I’m sorry it didn’t reach you. If I don’t hear back from you after this–I will try emailing directly instead. Yes, the ALK trial you read about is the one I’ve been enrolled in–so very lucky that it came along when it did.
I am proud of Jem, as I’m sure you are of Georgia. Two very independent young women!
Take good care, and I will be in touch.
Oh linnea how lovely to hear from you! I am thinking of you every day and really rooting for you (is that the right American word?). I did mention your case to Cancer Research too and reminded them that it’s people like you – living thriving beautiful artists with children and partners and friends – that it’s all about. Do email me if you can… and thank you so much for this inspirational and lovely blog… hugs and love, from Liz
You are the hope for all of us. My wife has just tested ALK positive and we are waiting to start her clinical trial at MSK. However, she suddenly coughed up some blood yesterday and I’m really concerned. Just wondering if you or your followers on this blog have any similar experience to share. Thanks so much,
Jim. talk to her oncologist about the blood. I have on occasion coughed up blood. It can be related to the lung cancer, but might also be benign in origin. Best of luck to your wife on trial; it offers great hope to those of us who are ALK positive. Linnea
My baby brother was just diagnosed with Adenocarcinoma with BAC features in June of 2010.It was just recently staged last month and he was told it was Stage IV. He is only 34 years old and has never smoked. The family went into shock. I don’t think anyone is really able to process it still. Its almost like its not real. He will begin a clinical trial of avastin and tarciva together next week. The side effects sound horrible but not as horrible as chemo. I made him promise me he won’t give up and I asked him what he needed from us rather us force on him what we think he needs right now. Right now we are supporting him with all the love and help we can.
Your story is inspirational. What a beautiful person and spirit you are. I look forward to reading your updates. I will forward your blog link to my brother today.
Wishing you dreams that come true and daily miracles,
Harriet, I am so sorry about your brother. There would seem to be an emerging trend of ever younger never smokers contracting lung cancer. It breaks my heart. Please make certain that his oncologist tests his tumor for mutations; as a young never smoker with adenocarcinoma, the likelihood of him possessing a mutation for which there is a targeted therapy is high. I wish him and your family good luck (and please stay hopeful: his youth and non-smoking status, the very things that make a diagnosis of lung cancer so surprising, may mean that his lungs and general health are actually better equipped for this fight.) Linnea
My dear wife Barb was diagnosed with BAC in November of 2004. Her brave fight and our faith has brought us to … 2010! We have seen 5 grandkids born since her diagnosis!
In May she had a tumor sample sent to MGH for ALK+ testing – and was tested positive! We were actually registered for initial visit at MGH as part of the trials for Crizotinib – then by wonderful providence found that an open arm of a phase II study had opened in Columbus OH – much closer to our home in Salem VA, and a town where we lived for 13 years while we raised our first 3 kids, have dear friends, and within 2 hours of two adult sons and grandkids. :<)
We are awaiting a confirmation test by Pfizer of the ALK+ results – they insist on doing the test again themselves for this arm of the study. We have had all our baseline CTs, MRIs and EKGs, plus eye exams in prep for the study. Should know Monday, drive for first Crizotinib on Tuesday.
Barb has had 6 rounds of Chemo – one at Duke University, the rest at our local cancer treatment in Salem, VA.
She was Stage 3-4 right away in 2004 – but by God's help and good medical help she had no coughing until November last year. She had radiation and chemo together in late 2006 – and the lung damage nearly killed her, poor dear! She was actually sent home to hospice care. BUT she recovered! then NO treatment for one year.
Barb's tumor activity strongly tracked a blood marker called CEA – so our skilled oncologist Dr. Paul Richards used that to guide treatment. He has been very creative. For instance, from the beginning he prescribed Celebrex as a strong anti-inflammatory agent – the thought was that this would help. Again – we are in 2010!
Alimpta was her most successful treatment to date – no progress for over 15 months.
Since she has asthma the BAC now continually aggravates that and now coughing is very severe. We are hopeful that the Crizotinib will be made available and that she will be blessed with great results like yours!
Has Doctor Shaw talked any more with you about "what next?" one of your earlier entries said she had talked about the new drug HSP-90.
I have read that you consider yourself an atheist – we are Christians – happen to be going to Lutheran church now, but consider us just to be God's adopted kids – and we rely on his providential care – your blog has been important to us, and He has used it to bless us and many!
May he bless you with 5 more years, and 5 after that!
Bill & Barb
Bill, I’m glad you found the blog. That is also good news about Barb testing positive for the ALK mutation, as now you have a target for treatment. I still don’t know what is next for me, although an HSP-90 inhibitor is definitely a possibility. I would like to stay on the crizotinib as long as possible; because it is such a tolerable treatment, but also because new discoveries and advances in treatment are happening all the time. The more options the better! So anyway, sounds like Barb has a hang on that survival thing already; I wish you good luck with crizotinib or whatever comes next. Linnea
Hi Linnea – Thank you SO much for sharing your personal experience with lung cancer, participation in research, as well as lung cancer facts & figures. I invite you to consider contributing some of your passion to The National Lung Cancer Partnership (@ http://www.nationallungcancerpartnership.org/). It’s members are lung cancer survivors, advocates, and clinicians & its mission is to educate, advocate, and support lung cancer research so that more people diagnosed with lung cancer become survivors. I hope you’ll help support its mission to make lung cancer more visible, decrease deaths due to lung cancer, and help patients live longer and better, through research, awareness, and advocacy.
Tina, thank you for your kind words. I am a big fan of The National Lung Cancer Partnership. I will add them to my roster at the bottom of the blog (a work in progress). It is my hope that by writing about my own experience I am able to help make lung cancer more visible. Linnea
I was diagnosed with State IV Adenocarcinoma last May, 2010 12 days after my 50 birthday. I have never smoked but my parents did so I don’t know if it was related to their smoking. I started on Tarceva in June and had great response to it. I am being treated at Dana Farber at the Faulkner Hospital. We could not get enough material to do a genetic testing. I have three small tumors also which we are now treating with Avastin starting yesterday along with the Tarceva. I didn’t think I would make 3 weeks but am beginning to think that I may have years left. Dana Farber has been fantastic. I have gone from being on four liters of oxygen to climbing The Flume in New Hampshire.
Lee, twice now I have felt I had but months to live. I too am amazed at how my body has regained strength (my oxygen level is almost never lower than 98% and is usually 100%–without my lower left lobe and with cancer in both lungs). And I also now believe I’m going to be here for awhile (and will climb more mountains). We have much in common. I wish you well, congratulate you on your strength and determination and thank you for your comment.
It was wonderful to meet you this morning on the flight from Washington, DC to Manchester. I have been thinking of our conversation all day, and just checked out your blog. It is lovely. I will keep following you and sending my thoughts your way. If you are back in DC, look me up. I would love to see you.
Debra, it was my good fortune to have you as a seat mate. Thank you for getting in touch right away, and I will be looking you up without fail. Best wishes to your associate who is in this battle.
Linnea, it was so nice to meet you and get to know you on a personal level. You are an inspiration and i am honored to have met you. Your blog is amazing and thank you for sharing it. I look forward to getting to know you more.
Kristina, you and Shannon are wonderful. Your mom would be so proud of what you are doing and I seriously hope we can continue to join forces as friends and advocates. Not sure how I feel about people of more advanced age trying on their children’s lingo, but here goes: you rock. Love, Linnea
Aw, thank you very much! We hope she is proud and i’m sure she is. Yes we better join forces as friends and advocates! And you ROCK as well. So glad to have met you and i really do look forward to spending more time and getting to know each other.
This evening on SKYPE, my father told me a story about a wonderful woman he met while waiting for his chemo treatment at MGH. She noticed he was wearing a Bolo Tie made of bone and said she would send him one that belonged to her Father. “Look at it!” He said while dangling the silver tie near the camera on the computer monitor so I could see the Native American design. “Beautiful, isn’t it?” As he showed off his newest treasure, he was smiling for the first time in weeks. “Indeed, it is.” I responded. “What a lovely thing to do.” Thank you, Linnea, for making my father so happy, especially at this moment when he is struggling. I wish you all the best with your “journey” and hope that your recovery continues. You are an inspiration.
Janice, thank you for the lovely message, Your father and his wife are a charming couple. All too often in oncology, we patients regard each other with curiosity but do not initiate conversation. The bolo tie was a stepping off point, and as we talked, your father and I realized we had more in common than a disease and a waiting room. I hope and expect to see him on future visits to the hospital, and I will be cheering him on in his fight.
I can’t get enough of your blog. I’ve been sitting here reading it all night (instead of doing the work I’m supposed to). We’re currently revamping our website to include user generated cancer story videos. We’d be honored to have someone with your kind of voice. Details are in the link below but in a nutshell:
1) You make a video talking about the day you found out you had lung cancer.
2) We put it up on our site.
3) We link the video back to your blog, facebook and/or webpage.
The video is your property and you retain control of it.
Like I said, we would really dig your participation.
Thanks for your time,
Cliff, I would love to participate. I remember seeing some of your videos after a link was posted to them; I found them incredibly moving. Also, checking out the lung cancer ‘library’, it looks as if you could use some more participants. Let me know what I should do next.
Contacted you in June of last summer when my baby brother was first diagnosed with Stage IV Lung Cancer/BAC Features. You were so encouraging.
Wanted to know if you or any of the other posters have had pneumonia or know someone with lung cancer who did have pneumonia. He began with pneumonia and fever at the beginning of February. They gave him antiobiotics /pain meds / oxygen and things seemed to subside. He hasn’t been the same since. The fever came back. They went ahead and put him in the hospital last week. He has been in there since last week. They weren’t able to break the fever until yesterday. Breathing is labored. He can still talk. Was able to get up and shower and brush his teeth and put on clean pajamas. Now he can’t breath well again and they have put an oxygen mask on. He is still taking pain meds. They can’t take him off oxygen. He is in OCU an ICU for oncolgy patients. He was told he has lesions now all over his lungs. The cancer is in both lungs. Its inoperable and multi-focal. The Tarceva rash is dissappearing. I don’t know if that means its not working anymore. He still has chemo treatments by I.V. They think he may have a clot in his lungs as well but I haven’t gotten that confirmed yet. Have you or anyone on this board been through this? Do lung cancer patients survive pnuemonia?
Harriet, I’m so sorry that your brother is undergoing a difficult time. I have had pneumonia, and I did recover, but I think the great issue now may be the extent of the lesions in your brother’s lungs. I would discuss with his oncologist what the plans are for treatment and also ask he/she to give you a a clearer idea of how serious the current situation may be in terms of recovery. Best of luck, Linnea
Stumbled upon your site in my research. What a tremendous wealth of info for me to devour. I was diagnosed with this dragon at the end of March. A month later I decided to write about it as a catharsis. Since I know absolutely nothing about blogging – naturally I created a blog http://fightingmydragon.wordpress.com/. I feel it will help me cope. I intend to scour you entries from beginning to end. Thanks for making it available. Breath on.
Jeff, I checked out your blog. You’ve got an incredible spirit and I wish you all the very best in this fight. Keep me posted.
I noticed your blog and believe you have great stories and a remarkable will to survive. I have a question about your blog. Could you email me at firstname.lastname@example.org?
Thank you for your blog. I also have never smoked, and was diagnosed with Alk+ Stage IV NCSLC in June – essentially no symptoms except what felt like a pulled muscle in my left side (and was diagnosed as pleurisy) for a few months, and then shortness of breath in extreme heat in June. I am undergoing chemo and am waiting for FDA approval of crizotinib. You are an inspiration to me! I agree – LC is the farthest thing from our minds when we have never smoked and so the diagnosis hits hard.
Hang in there – I love to read about your wonderful journey and your great attitude!
Sharon, I just found some comments today that I had never responded to–yours being one. I apologize. Well, crizotinib got that approval, so good luck; I hope it kicks cancer’s butt.
I think your story is amazing. Your blog was recommended to me because of a post I made here. Let me know if you are interested. Blessings, KatieB http://www.lungevity.org/l_community/viewtopic.php?f=50&t=45641
Katie–I will help if I’m able. I will send you an email.
it was so great to run into you yesterday at MGH and talk briefly…I wish we could have continued our conversation, but we both had to see our doctors.. I would love to continue our conversation via email, altho
I don’t have your email address . Please send.
Laurie–I just saw this, and I will (send my email).
I found your blog after my mother (58 y/o, otherwise healthy non-smoker) was diagnosed two weeks ago with stage III adenocarcinoma in her right lung. Your blog gives me hope. Thank you.
Erin, I’m sorry about your mom. do stay hopeful–and please make certain her oncologist tests her for genetic mutations.
It was so special to run into you at MGH on thurs, while we both were getting our CT scans. I wish you the best with the new clinical trial.!!!!!! I know it will work for you.
As I mentioned during our meeting, I saw you at the survivor’s workshop last spring at MGH. You have been inspirational both times we’ve met.
My cancer journey started 8 years ago with a Lung cancer diagnosis. When all was said and done i had my right lower lobe removed, I was staged at 1a back then. (non-smoker). Six years after that I had appendicial cancer that had burst and deposited the cancer throughout my abdomen. I had a bowel resection and was on chemo for advanced colon cancer (since appendecial is so rare the treatment follows the protocol for colon cancer)… I do have to add that my cancer journey really started in 1964, when my 5 year old brother died of cancer. I was his older sister and it was devastating to me.
So the last 3 times i was scanned, diffuse spots on both lungs have been growing, and like many of us, i now have stage 4. My next step will be a wedge resection, so a genetic profile can be determined, and I’ll go forward from there. It may be a mets from my abdomen, or a recurrence of the Lung cancer..
Regardless it’s so nice to have such a rich support system.and I look forward to reading your next blog.
Cheryl. it was great running into you. I wish you luck on your latest travels. Just remember what you have already been through and how obviously tough and strong you are.
Linnea, Just got a chance to view your video. It was a pleasure meeting you and your husband in Boston. Your story is remarkable and we heard the same story over many times last week. The stories were different, but similar. We wish you continued good sucess and look forward to our 10 year reunion. Best wishes, Glenn
Linnea. This is an incredibly moving video and journal. I don’t know whether you remember me from Ipswich days long ago, but strangely enough I woke up thinking about you yesterday and decided to Google you. What an amazing journey you have had. Your strength and courage, grace and wisdom are profoundly touching and inspirational. Stay strong, as I know you will, and I will hold you all in my thoughts and prayers. If you think of it, send warm wishes to Jem as well!!
Caroline, I’ve already sent you an email, but I can’t help myself. I’m a responder! So good to have you along…
Hi Caroline! Mom told me you had commented on her blog so I figured I would pop over to say hello! I hope all is going well for you!
I hope YOU are well. I think of you often and wish you only the best. Mom has my email if you want to be in touch. Take good care of yourself. Be gentle and breathe deep.
Thank you for blogging about your lung cancer. My husband was diagnosed in October 2009 with Stage IV lung cancer and it was determined that it was an ALK mutation. He was 41 and had never smoked. He has been on Crizotinib for nearly 19 months (clinical trial). Unfortunately, he has several tumors in his brain and he will be going for radiation in the next week or two (he was scheduled for this week, but the machine broke). We have been dealing with Stage IV Lung Cancer for 28 months and it has been a long and lonely road. I have also found that blogging helps and has connected me to people who understand.
Oddly enough, we live in Parker, Colorado (moved here 5 years ago) and have been lucky enough to have my husband treated at the University of Colorado Hospital.
My thoughts are with you. You have paved the way with this clinical trial and I believe that my husband would not still be alive without this drug.
Robin, I am sorry you find yourselves on this path as well. When I was first diagnosed as a young (45) never smoker, I thought I must be a novelty (exactly the wrong word–more like lightening struck unlucky). However, I have now known far too many people in the same situation.
Crizotinib is a great drug for those of us with ALK mutations, but the brain is it’s Achilles heal. I hope the radiation goes well (a broken machine? How frustrating!). I toured the labs at University of Colorado and they looked great and I was very impressed by the physicians we were introduced to. Being treated at a large research hospital has a myriad of advantages.
I would love to see your blog if you wish to share the URL, or is it found on Caring Pages? And I wish you both the best of luck as you go forward.
PS: I heard a rumor, not confirmed, that LDK does pass the blood/brain barrier. It might be worth discussing with your oncologist.
Ran into your profile on inspire. I’m with the thyroid cancer group. just wanted to pop in and say ‘thank you’.
your discussions on inspire are touching (cranes, rabbit rabbit) :)) thank you for sharing, and I will be bookmarking your blog.
you are beautiful 🙂
I am a novice blogger but wanted to comment in response to Robin’s post. I have Stage IV NSCLC (ALK pos) diagnosed in April 2009, treated initially with cis/Alimta, then radiation, and joined the crizotinib trial at UCDenver (I live in SC so this is quite a lot of traveling) in Sept 2010. I developed a second mutation relatively quickly, had an adrenalectomy, more radiation, and prepared to start LDK378. Baseline brain MRI showed previously unknown mets and I had SRS but subsequent MRI showed numerous additional small mets. I am a physician and was very hesitant to have total brain irradiation. My wonderful Colorado oncologist persuaded Novartis to allow me into the study. After 3 months on drug the number of brain lesions had decreased by about 2/3. My SC neurosurgeon and neuroradiologist have been really impressed with this response as have Dr Camidge and I. I will have another brain scan in 6 weeks along with my next PET. That will give us much better info on how effective LDK is in crossing the blood/brain barrier. I had a PET this week which showed other areas mostly stable – not the miracle cure we all hope for but lack of progression is always good. Every patient is different in clinical picture and life situation (I am 65 which makes a difference in approach) and I am sure Dr Camidge or whoever you see at UC Denver is approaching your brain involvement in the appropriate manner for what you have. I only wanted to offer encouragement for the possible benefits of LDK 378 in the brain.
Hi Gene –
Thanks for the reply. You can check out my blog at http://www.landamongthestars.com where I discuss my husband’s cancer as well as our lives. He was originally treated by Dr. Bunn but is now being treated by Dr. Camidge.
Best wishes and prayers for your continued health. I found your blog by accident and now check it regularly. My mom, 64, is a lifelong non smoker diagnosed in Oct. 2011 with stage 4 nsclc. She’s got the ALK mutation and is on Xalkori now. I hope you have continued success when back on LDK. Keep up the great work and thanks for the inspiration.
Kelly, best of luck to your mom on Xalkori. And thanks for the kind words.
I read over your blog and really appreciate you sharing your story. I was wondering if you posted guest blogs, and if you would be interested in one? If so please contact me via email. Thanks again.
Wish you the best,
Thank you Danielle.
I am super impressed with your spirit and your blog.
Take a look here …your blog features in the list…http://trialx.com/curetalk/2012/03/top-5-bloggers-of-lung-cancer/
Thanks Priya, for your comment as well as the listing.
Our site, CureTalk, is talking a lot about Lung Cancer this month, your comments would be really appreciated…
I don’t normally post on sites but couldn’t leave without telling you how inspirational and amazing I have found both you and your blog, Linnea. I was diagnosed with advanced LC at the age of 31 (non smoker). Sadly I don’t have any currently known mutations which means my options for future treatment are very limited. However, remarkably, I had a full response to my first line chemo and have maintained this for almost 20 months. I know the odds remain stacked against me for long-term survival but I stories like yours give me hope for the future. I wish you all the very best Linnea.
Lolly, I’m sorry you were diagnosed at such a young age. The fact that you responded to chemo (a full response, no less) is indeed amazing. So, even without a mutation to target, stay very hopeful. You may just be a ‘responder’, and new mutations will be identified. I thank you for your kind words and I hope this is just the beginning of a long term friendship for us 🙂
How can I contact you?
My dad has cancer with ALK mutations, and His cancer has become resistant to the crizotinib.
I would like to consult with you because I realized that your cancer has become resistant to crizotinib.
My name is Laura Montini and I’m an editor at The Health Care Blog. I found your site through your post on Scope. The THCB editors and I are really touched by the post on this blog. I’m wondering if you might be interested in crossposting on THCB. Email me if you’d like!
Pingback: Sending Some Love to Our Bodies | The Doctor Weighs In
I came across your blog after yours and mine were listed by TrialX as top 5 cancer bloggers. I really like your writing style and the content. My attitude is very similar to yours – I have Stage 4, supposedly ‘terminal’ lung cancer, am a non-smoker, but am determined to out-live the cancer. Your justification for writing the blog exactly matches my own.
Best wishes from the UK,
Mike, good to hear from you and glad that you are out there making some noise as well. This is a harsh disease and we all want to know that we are not alone. Keep on keeping on and let’s check in on each other occasionally.
I am the scientific media editor at TrialX. We at TrialX/CureTalk like the information that you share on your blogs and would like to connect with you, wrt a guest blog and interview. Please do mail me.
So great to meet you on Friday. In a few weeks you will start to see the videos we are producing in collaboration with MGH on our website, http://pieceofthesolution.org/
Thanks for the idea about “hero pages” for the docs, my board loves the idea.
Have a Great Day
be A Piece of the Solution
Ed; great to meet you as well. I am shooting an email your way…
Inspiring, you are. Hang tough.
Sorry for the bleated responses–but I thank you!!
.what a tremendous spirit you are!!! Keep up and stay well inside!!
The best of healing to you!!!
Hey what an inspiration and you have given me some hope, my mum aged 65 has been diagnosed with terminal lung cancer today and as you can imagine I am devestated. They are offering her chemotherapy and have also spoke of trials similar to yours, are you able to send me a little more information on the trial drugs you have taken. Regards Laura
Laura, I am so sorry to have not responded sooner–I hope that your mom is faring well. The two clinical trials that I have participated in are both for ALK mutants–the first trial was for crizotinib, which is not available by prescription as Xalkori. The second trial, which I am still enrolled in, is LDK378. Best of luck to your mom, and should you have more questions, I will be more prompt!
I found you blog today as many of my friends were encouraging me to blog of my cancer experience and I figured I would see if there was anyone out there who had a BAC blog and I was happy to find your site. I too have BAC stage IV but with a KRAS mutation. I was diagnosed about a year ago but their believe I have had this for about 3 years.
Chemo Alimta & Avastin every 21 days. Cancer is in partial remisson and I am doing very well. Your blog is a tribute to fighters. This is a horrible cancer but the fight can be won…you prove it..i prove it and there are many others like us.
You are an inspiration…..keep up the good fight! I know I will 8) I will be following your fight!
Terri, I am sorry about your diagnosis, but it sounds as if you’ve got your fighting spirit in place. It is fabulous to hear that your cancer has responded to treatment; Alimta is a possibility for me at some point as well.
Stay strong and hopeful and I wish you the best of luck too!!
Linnea, We saw an article in the WSJ last summer about you and the drug trials. We never buy the Journal but something made me that day. I meant to write to you last year but it got away from me. Anyway we owned High Street Antiques in Ipswich and remembered you from the shop and your son Pete and daughter. You may or may not know that George had a stroke and we sold the shop and moved to NC. That is a long story, but we are moving back whenever we sell our house. Anyway you always brightened our day when you came in. We wish you many more years and admire your tenacity. Kathy and George
Kathy, how good to hear from you! I had no idea George had a stroke but I think of him, you and High Street Antiques with great fondness; where little Pete learned to shop (the bowl of candy never hurt). We, of course also moved from Ipswich. The truth is, I miss it too and if there were a way (and at I don’t think there is, at least not in the near future) I would love to return. Our son August is coming for a visit tomorrow (he lives in CO) and his one request was to go to the Clam Box. I miss the people, the marshes and the beach.
Please say hi to George, I always thought him the nicest of guys. I hope he is doing well and that you are too. Thank you for getting in touch and maybe one of these days we can meet up again.
Hi Linnea: I just came across your blog when i was looking to include a link to The Termeer Center in an email I was writing. I actually did use it as it was a great summary of the symposium and ribbon-cutting ceremony last week. (I was there as well) I would love to send you a slightly more private message, but did not know how to do that. I am part of the local group Voices of Hope, an all-volunteer 501(c) 3 organization. We sing/perform to raise money for cancer research and awareness and we have partnered with MGH and all of the money raised in 2012 (and likely going forward) will go to benefit the Termeer Center. II couldn’t find an email address for you, but I would love to contact you outside of the blog, if you are willing, in what ever way is most comfortable for you. I have attached my info in the hopes you might get in touch. Your story, blog, the energy that permeates time, space and technology is incredibly powerful, moving, motivating and inspiring. Thank you for being transparent and sharing and hope you are in a good place today!! Thanks, Amy Falk
Thanks Amy–email coming your way!
My name is Núria and I’m 27. I’ve been diagnosed a lung cancer stage IV (ALK mutation) one month ago. I started chimio treatment (two cycles) but in few weeks I’ll be part of LDK378 trial. I’ve seen that you’ve also been enrolled in this clinical trial, and I would like to know more about your experience with it.
I want to thank you for having such an optimistic blog that has helped me to understand better this illness and given me the strength to keep on fighting to get over it!
By the way, I got inspired from your blog and in few weeks I’ll have my own, called pulmoncitos, in spanish!
All the best! Núria
Nuria, I am sorry to see that you share this diagnosis at such a young age–it has become increasingly common for people in their twenties to be diagnosed with lung cancer. The good news is that much research has gone into treatment for ALK mutations and there are currently several options. I have written a fair amount about LDK in my blog (although I need to come up with a better index system–on my list of things to accomplish!). If you have specific questions please let me know. Also, I would love to check out your blog so please let me know when it is launched–I think you will find it an inspiring experience (and in turn, you will inspire others).
My name is Urban, I am a 43 yr old Swede. On the 1 of May, 2011, I was diagnosed with NSCLC with ALK+. With a wonderful wife and two small girl it was though indeed! I have just seen your blog and see that it goes a long way back which is inspiring. I have been on Xalkori or 8 months so far and I am feeling great but to be honest I am also getting increasingly worried about resistance to Xalkori coming up. How long were you on Xalkori? Do you know the ave/median?
Anyway, I have started to look for what to do post Xalkori and LDK378 has come up. I realize that you were on stage 1 trial with this drug (and I hope they are on a lates stage by now?) but is it something you would recommend? Side-effects? Have you heard of other tests also treating ALK+ post Xalkori?
Now I am hooked on your blog, will follow it as much as I can. I am very greatful to Xalkori as the quality of life is great and a 100% different to the Cisplatin/Alimta/Avastin treatments I had for 4 cycle + 4 cycle maintainence.
It would be fantastic if you could respond to my queries!
Urban, I responded to your query to Evan without having seen this one. I am sorry that you have this diagnosis at such a young age and with two small children.You will find the ALK mutation a blessing of a sort, as there has been a lot of research done on this particular mutation and we now find ourselves with several treatment options (and hopefully even more are in development).
I was able get almost three years from crizotinb; I just found out yesterday that the woman who started trial the day after me is still on–so that’s more than four years for her and the current record. I have now been on LDK for more than a year–so again, more than four years from two treatments. Not bad, considering the fact that when I started crizotinib back in 2008, it was just a shot in the dark!
As for side effects on LDK, similar to crizotinib but more issues with GI (vomiting, and in my case, diarrhea). However, only a very subtle visual disturbance and I have more energy than I did before (with crizotinib I would it a wall around 9 pm–just exhausted).
So again, sorry for the reason that you have found me, but glad to have you aboard. You may have stumbled upon my entries about my trip to Stockholm–I have a big soft spot for Sweden.
Your are an inspiration for everyone!
i am a stage IV. My liver has no sign of cancer, after 5 sessions of chemo. they stopped and now waiting for ct to have radiation. my lung tumors have gone from 8 down to 2. i have thymomic non-small cell. they say it’s rare, only 200 in the states. they also cut my phrenic nerve lost the use of my left lung. I am 82. my numbers are good so hang in there.
It sounds as if you have been through a lot. I have never heard of the sort of lung cancer that you have; only 200 people is uncommon indeed. Good luck on the upcoming CT scan, but it sounds as if you have had a positive response so far. We will both hang in there!
Hi my name is Carolyn and I’m a 39 year old healthy woman who has just been diagnosed with ALK positive lung cancer . I live in Australia and are just waiting to see if I have been accepted to go into phase 3 of the trial . I would love for you to email me , after reading your blog I feel some sort of hope for the first time .
Hope to hear from you soon ,
Carolyn, I am sorry to hear that you are facing this diagnosis, but the fact that you are ALK positive should give you quite a few treatment options, and perhaps the clinical trial will be your first one. Good luck, I will email you shortly.
Hi again .
Just wanted to let you know I’ve been accepted onto phase 3 of the trial and have been randomized to have the combined chemo of pemetrexed/carboplatin . Im not sure how much you know about this chemo . I was hoping for the crizotonib but was selected for the chemo . I start on Monday , I have been assured that this chemo is ‘gold medal ‘ treatment , think I was hoping for the oral after reading of your success with it . Apparently if my body doesn’t respond to the chemo I can be switched across to the oral . Thanks for your inspiration , I certainly need it at the moment .
Carolyn, now I can’t remember if I emailed you or not–I’m sorry. I can understand your frustration at being randomized into the chemo part of the trial. Fortunately, they allow you to switch if there is progression. As some consolation to you, pemetrexed/carboplatin may be my next treatment.
Now I will go email you so you have my address!
Thank you for keeping just a inspiring, detailed blog on your experiences as well as sharing all your emotions and other’s stories. I readily read your blog for source of strength. I myself, are fighting this same disease, Stage IV NSC Lung cancer, diagnosed Feb 2011 at the age of 36. I’m happily married with 3 young kids, ages, 3, 4 and 6. Otherwise young and healthy, a lifelong non smoker, it was shocking to be diagnosed with this! Upon diagnosis, I was given less 6 months to live and had to quickly learn how to live with this terminal disease and get my life in order. My blog is http://fawnlee.blogspot.com/. I also join Inspire as well as joined a few local Lung Cancer support group for support, update on the latest Lung cancer news/treatments and also read grace. Keep up your great blog. Lots of Love.
Fawn, I am familiar with your blog and I draw inspiration from you as well. I am sorry that you are facing this disease at such a young age and with three beautiful children. One of my goals is to post in my sidebar a list of other’s blogs–I simply haven’t figured out how to do it yet with the template I have, but when I do, I will include yours. Stay strong and hopeful…love, Linnea
Thank you Linea. As a fighter, I arm myself with lots of information, as well as support from everyone as much as I can. Sadly, its unfortunate that like many, this illmess gets easily overlooked & diagnosed so late & when it is known, it’s heartbreakingly devasting to know its untimely terminal! Keep up your hope & sharing your story! With deep admiration, love & prayers, I thank you for a wonderful resource of info in your blog.
My Name is Dennis Burke and I am 62 yrs old from Indianapolis, In. I was diagnosed with Stage IV lung cancer on 6/22/11. I have gone through 3 rounds of treatments every three weeks. My oncologist sent a biopsy of my cancer to Harvard several weeks ago. It came back positive for the ROS1 gene. I have an appointment two weeks from today to find out more details.
They want tp put me on the Crizotinib drug. Cant wait to find out more about how this will work for me. Thanks for the info that my wife found.
Dennis, I believe you have every reason to feel that this is a positive development. If you or your wife wishes to leave a comment on the blog where Craig wrote about ROS1, I will let him know and he can respond (he is a self taught quasi expert in all things ROS1):
Best of luck!
art and praying is my answer for stage 3 no cancer in liver, lung only doing chemo 8th time for the lung. shrunk from 8.5 to 3 cm, new tumors game up will chemo them to. this started 9 years ago with thymoma lost the left lung, still betting the odds by 5 years so far.
My wife, Jeré, was diagnosed with Stage IIIB lung cancer in Sept 2012. We have been through radiation and chemo (cisplatin & etoposide) in October and November 2012 in Portland OR at Good Samaritan Hospital. We returned to Portland for evaluation of treatments effects in late January 2013. Tumor in right lung has decreased in size and may be in regression, lymph nodes have returned to normal size in thoracic area and right clavicle area. Her collapsed right lung has regained inflation. There are several new areas of concern in lower right and lower left lobes which oncologists cannot tell if they are cancerous or infectious anomalies without a PET scan which we cannot afford.
Jeré does have a genetic EGFR mutation allowing her to take Tarceva to block angiogenesis of the tumor and metastasis of her cancer. But my concern is what other genetic testing should we be pursuing to out-fox the mutability of lung cancer? Can anyone help us, and what might that strategy be?
RIck, I apologize for the delayed response to your comment—it languished in my inbox. I am sorry about your wife’s diagnosis; this is all so tough. It sounds as if progress has been made but I know that new areas of concern are not easy to ignore. Let us hope they resolve on subsequent scans.
As far further genetic testing, EGFR will like remain the primary driver of her cancer, but if resistance to the TKI inhibitors occurs, there may well be an acquired secondary mutation that could be identified by further genetic testing of a post tarceva biopsy. The tricky part is that there are not many alternatives to tarceva yet (as far as a targeted therapy) so I think your best strategy is to research clinical trials and to also talk to her oncologist about what other possible treatments might be appropriate in the future (chemo or radiation?).
Best of luck,
Hi lenea, i am so happy to read ur story it is great inspiration my story is also very similar to you. I was 36 when i was diagnosed of stage 4 lung adenocarcinoma. I am a non smoker infact nobody in our family smokes. But i got lung cancer it’s nightmare. My baby was only 2 yrs when i was diagnose. It is non operable. I took chemotherapy but it did not work. I had almost given up. I did not attend the followup clinics but my oncologist was kind enough to issue the tarceva drug to my husband who is a GP. Well it seems i am responding well to the drug with help of god and very happy i feel very much better except for minor side effects as acni. I know when everybody elses give up hope when it comes to stage 4 it is difficult but god has a plan so lets pray to live as much as possible. God bless u, maya from sri lanka
Maya, I am so sorry that you have this disease at such at young age—it is just all too common these days. However, it is good to hear that tarceva seems to be working for you. Do you have access to genetic testing? As you are responding to tarceva, you may well have an EGFR mutation. However, I know one person who is ALK positive who none the less did well on tarceva for several years. If you have not been tested, you may want to see if it is possible. In the meantime, I send you positive thoughts and wishes with the hope that you continue to feel well.
Hi Linnea and Maya,
First of all i wish you all the best and be healthy forever. My mother was diagnosed of Stage IV Lung cancer ( pan-cost tumour) in November 2011. She was 61 years old and is a non smoker. We tried to fight her cancer with chemotherapy, which she didn’t tolerate well. In August 2012 i got to know about Tarceva and without doing any gene mutation test she took it as it was the last hope for her life. I have to oder a Generic from india as we couldn’t afford to pay for the original Drug.
Luckily, after 2-3 weeks we could see the effects of the treatment. She gained her weight, no cough and no shoulder pain. Since then she is taking the Generic drug. Even though it is too expensive for me, i am so happy that she is living and having no severe problems.
Sepali from Sri lanka
I’m an editor at Everyday Health (everydayhealth.com). I’m interested in talking to you about writing for our site. How can I reach you?
Hi Jessica, I will send you an email.
I’ve recently been diagnosed with NSCLS ALK+, and have been reading your blog a lot. It’s been so wonderful. Is there a way I can send you a personal message? I’m not sure how to do this on WordPress.
Johanna, I will send you a pm so that you have my email.
You are a true inspiration. I’d like to write to you, separately. What is your email? Thank you
Linnea, thank you for what you do. My sister Ruthie Leming was a nonsmoker (never smoked) who died of lung cancer in 2011, at the age of 42. I’ve just written a book about her inspiring fight, and the beautiful community of family, friends, and neighbors who walked with her. I was so moved by what I saw on Ruthie’s cancer journey that my own painful relationship with our hometown — I left at 16, bitter and angry over high school bullying — was healed, and I returned home after nearly 30 years away. The book has just been published, and it’s getting terrific reviews. I hope your community here will read it and find Ruthie’s story of faith, hope, joy, and redemption amid the suffering of cancer to be helpful in some way to them or their loved ones.
Here’s an Amazon link to the book.
Rod, I am sorry to hear about your sister but thank you for sharing your book with us.
Thank you for sharing your story. Your writing is beautiful. Stay strong.
Thank you (please forgive me, but I just found your comment).
Mywifediedlast December she had terminal cancer stage four she tried tarceva did not work she had chemo for one year she was only 53
Hi Linnea, your story in inspiring. Thank you so much for sharing. I do video outreach for Everyday Health and would love to discuss a video together. If interested, would you please email me?
Mi mother in law was just dignosed with lung cancer. She is someone that I deeply love and care. I was wondering were could we get the medicines you mention on your blog. She got her kidney removed last year and two days agos they found out it had methastasized in both of her lungs. They are awaiting the biopsy results to se the type of cancer she has, but they say it is fairly possible to be a adenocarcinoma of renal cancer with clear cells.
Thanks in advance and keep the good vibes going
Hope you are doing great. I happened to be on this site for some information regarding effectiveness of Xalkori. My friend got Dx with Stage IV with effusion. Helpful info within blog and comments. Thanks again for taking time to write.
the stage 4 cancer in my liver is in remission the cancer in my lung is shrinking with chemo 10th year fighting my left lung is gone frenic nerve was cut. oxygen 24/7 but i manage not bad for 83 year old. it ruff but i still able to paint, see my gallery on
“michael louridas gallery
Michael, not bad at all for eighty-three, or any age for that matter. Keep on painting—I hope to do the same later today!
WOW, I was so happy to arrow down to see that you responded on June 9, 2013. My mom was diagnosed with stage 4 lung cancer on Apr 29, 2013. She has the EFGR mutation and is currently on Iressa. Reading your story and seeing your most recent post is both inspirational and gives me hope. Keep fighting and I will tell my mom to do the same.
Karen, tell your mom to stay hopeful. I have a number of friends with the EGFR mutation who are long term survivors, including someone who has been on Iressa for nine years now (and he was diagnosed at stage IV).
THANK YOU LINNEA and I am sending you a virtual hug from Canada. I’m learning more reading your blog than I am form the health care team here. They’ve pretty much been giving my mother and us the gloom and doom; I completely understand their rationale for doing so but still hope and positivity does wonders. My mom is 68 years old and she’ll be turning 69 on the 23rd. I hope I will be blessed with many more years with her. I’m thinking of a blog too, my mother is an Asian senior and Asians really don’t like to talk/share. I know she felt alone, helpless and useless when she was first diagnosed and I wonder how many others felt the same way. It baffles me; no one has to be alone in this journey. I think knowledge is power and hearing from others like yourself I believe is the best weapon against cancer. Not only are you helping those with cancer you are also helping their loved ones/care givers/moral supporters. Kudos to you a truly beautiful person. My mom is starting to see the same light and she too is more willing to share her story and laugh which I haven’t seen in a long time. I hope one day we can all meet and share giggles together.
I am so glad to have met you last night. Your light is very bright. I forgot to mention another diet idea. It is juicing. I am including a website about the Gerson Therapy. I watched a movie called the Gerson Project a few months ago. It was at this point that I told myself if I am ever diagnosed with cancer I would try this (much to the horror of my Mother). http://gerson.org/gerpress/the-gerson-therapy/ I did go as far as to purchase a juicer about 6 weeks ago and am having a great time drinking greens with my children. The conversation we had last night is sticking with me.
Hi my name is adrian after a lung biopsy in Spain two days ago i´ve been told i have a malignant tumor on my lung (4mm) tomorrow cunsultations with the oncology team to discuss treatment strategy- i´m an incredibly strong-willed person and have already begun the transormation as a new healtheir me i am a photographer and have a blog here on wordpress i am convinced i shall be coming back to your blog regularily-so glad to find you here 🙂
Adrian, I am sorry you have gotten this news but stay hopeful (and strong willed)—I will go to your blog to enjoy your photos and to read more about your journey. Please ask if they will be testing you for mutations, particularly if you have an adenocarcinoma. And good luck.
I am a very positive person and now more so reading some of your blog i am about to embark on the hardest fight of my life the winner gets it all i´ll be coming back to your blog real soon and i´m going to add your blog to my blogroll:)
Adrian,my name is Craig and I was diagnosed 2wks ago with stage 4 non small cell cancer in left lung. Began chemo treatments last week. It is all so much to absorb and begin to fully understand. What did your oncology team advise? Best.
Follow their instructions,keep faith in their knowledge-most important though is a positive mental attitude- you can beat it if you want to-but it is a fight for all your life be strong 🙂
If you have the time please visit my blog perhaps you will enjoy my photography and my latest posts have a brief description of my first encounter with that news and how i have decided to approach the future which is uncertain: http://adrianharveyphotography.com 🙂
It’s been a while since I read your blog and I return here once I feel discouraged. As I said mom was prescribed Iressa. We had some really good days and some not so good. The follow up with the oncologist on Tues Jul 9,2013 was a positive one as she even gained weight. Yet they also noticed that she should not be on Zantac as it counters Iressa. She was pulled off Zantac on Fri and things took a 180. Never in my whole life had I seen my mother this ill she was vomiting and just sick. There’s very little I know about how patients react to Iressa and I know everyone’s cancer is patient but I guess I would feel more comfortable knowing that there are others our there. Is there a way I can talk to any of your friends on Iressa to compare notes. Thank you.
Karen, I’m sorry that things have taken this turn; hopefully it will be temporary. You should consider joining INSPIRE; you could definitely find people in the lung cancer group who could tell you about their own experiences. Here is a link and best of luck…
Hi Linnea, it’s good to know that you have been tackling such an illness so effectively! i’m a WP blogger / artist and while i am lucky to have been free of any such illness, i once had a real scare, post which i decided to use my Art to uplift the spirits of people who aren’t as lucky and are diagnosed with cancers. Do check my post and let me know if i can draw anything for you or anyone you know with cancer — http://niranjanshukla.wordpress.com/2013/06/29/art-call-for-topics-for-a-cause/
Linnea, I’m extremely happy for. You and the success that you ‘ve found. Through. Clinical. Trials. It’s my sincere hope. That God will sustain your live for years to come. And there will be. Time when diseases l ike these. Will be non-existent! (Revelations. 21:1-4). These things will certainly come true.
My father was diagnosed with advanced stage lung cancer ( metastatic squamous cell carcinoma of lung-stage 4) this april. Since then he has had 3 cycles of chemo with cetuximab-carboplatin-vinerlobine protocol.. however his latest scan showed disease was progressing and his cough and breathlessness also worsened. Pulmonologist has given another bad news that chemo has aggravated his interstitial lung disease. both the conditions clubbed together have a poor prognosis… and our oncologist has refused to give any more chemo given my dad’s weak n frail body. we are really worried…and think that we should try alternative therapies… can anyone help or suggest something please.
Puneet, I wish I had specific advice regarding alternative therapies but I don’t. It is so difficult when there is no additional treatment suggested. Do you belong to INSPIRE, the online support group for lung cancer? You may find some advice there. Best of luck to you and your father.
I KEEP TELLING MY DOCS DO NOT STOP WITH THE CHEMO. TRY THE LATEST. EVERY DAY THE FIND SOME THING NEW. THERE IS NO COMFORT IN DEAD, I JUST DO NOT WANT TO BE THERE WHEN I T COMES HANG IN THERE I WAY PASS MY TIME BY 2 AND HLF YEARS WITH STAGE 4
Keep on keeping on Michael.
My mother was diagnosed with NHL in 2006 and had Rituxan treatments. She was told she was in remission of NHL and monitored every year. In Dec. 2011, she had a CT, then PET which indicated two lesions with PET positive SUV activity and was then diagnosed with possible lung cancer and referred to a thoracic surgeon for biopsy. She had a Needle Biopsy at MSKCC on 3/1/12 on the lesion in the center that showed Stage 1a. So, we proceeded with a VATS upper left lung lobectomy on 3/20/12 at MSKCC. They found 1 out of 5 lymphnodes positive and diagnosed NSCLC Adenocarcinoma Stage 2a by MSKCC. Her NJ local oncologist staged her at 3AN1 and ordered 4 treatments of Carboplatin/Pemetrexed chemotherapy ending 6/25/12 at their office. There was two primory tumors in the left upper lobe that was removed.
We switched local oncologist around September 2012 and my mother was monitored with CT Scans, but kept on a watch & wait protocol trying to decide if what they saw on some of the scans was an infection or metastases. In April 2013, a CT scan of the Abdomen/Pelvis showed a new lytic lesion in the right iliac crest measuring 2.5 x 2.0 x 1.6 cm which they assumed was a metastasis because it was new. A biopsy of the bone was not recommended and PET Scan wasn’t done. Her oncologist put her on Tarceva 150 mg even though she did not have the EGFR mutation. She took another CT Scan on 7/17/13 which showed more abnormalities. Tarceva was stopped on 7/23/13 because the results of her CT showed progression. Now my mother has lesions in liver, spine, and thyroid that may be possible metastases, but again no test has been run to confirm.
Before taking Tarceva, she had one metastasis in the iliac bone. A month and a half later after taking Tarceva, it seems to be progressing more rapidly and I’m wondering if Tarceva had anything to do with the increased progression since it had nothing to target and she has a KRAS mutation. I started to research more into taking Tarceva without having the EGFR mutation because I got the impression it may do more harm than good when you don’t have the mutation.
I re-reviewed her molecular pathology and saw two reports that showed that one tumor showed KRAS G12a positive and the other tumor was negative for the 8 genes they tested and ALK which didn’t include ROS, MET, c-kit, etc. I then researched taking Tarceva being EGFR negative and KRAS positive and discovered that if you are KRAS positive, Tarceva will be resistant and have a 5% or less of efficacy. Two doctors, local oncologist and MSKCC oncologist, said Tarceva was the way to go and obviously it wasn’t. It caused my mother severe side effects and I feel we wasted two months we could have looked into KRAS targeted treatment if she is KRAS positive.
Has anyone else had a similar experience being EGFR negative and is anyone seeing hope in battling KRAS (certain drugs, clinical trials, other specific biomarkers to look into)?
Lisa, as I said above to Puneet, do you belong to INSPIRE, the online support group for lung cancer? It is a great way to connect with others and to get information. If you’ve not yet joined, I would copy and paste what you have written there, as I am certain you will get some responses.
Best of luck
This gives me hope. My mom was diagnosed with lung cancer today, the doctor said she has a huge mass on the left lung and it has spread over the the right, it has also effected her lymph nodes and it’s above her collar bone. I am18 and while I am supposed to leave for college in 3 days, I have decided to stay home to take care of her.
Jordan, what a tough situation. My children were seven, nineteen and twenty when I was diagnosed. Hopefully your college will give you a deferred enrollment. Please know that you can contact me anytime for support; I admire your love and dedication and wish both you and your mom strength on this journey.
My dad was given the dreadful news that he has stage 4 LC on December 29th, 2012. He is on oxygen and short of breath so the VA said no chemo but they did radiation. Then waited. Last week we found out the radiation did not work and they said they can do nothing else. He is alert fine and otherwise in decent health other than a heart that is fragile. I am not ready to say its over. How can we find out what more can be done?
Thank you for sharing your amazing story of life.
My husband Craig has stage 4 non small cell adenocarcinoma that has metastisized to the brain since fall of 2010.Did chemo, radiation… didn’t do much. Radiation shrunk things a little. It took a year to find genetic testing and found he has ALK. The xalkori helped for about a year and then stopped. In March of 2013, 15 more brain tumors were found and now the initial lung tumor has grown and pushed through the chest wall pressing painfully on pleural lining. Radiation on brain (5th time) currently being done, but cannot further radiate original lung tumor. Trying to find out if second generation for Xalkori is still in trial. His brain metastasis makes it tough to get in trials. This remarkable, beautiful husband of mine is going downhill quickly. Any ideas? Much love to you and I will keep you and your family in my prayers. I have 2 boys and one girl still in college and they are such sources of love, strength and laughter. We have been so blessed to have had all this time with Craig, my husband, and each of us has surrendered all to our dear God and accept His will. We simply live one day at a time, as I know you do, but felt the need to reach out to you and see if you had any further insight. Thank you for sharing your beautiful bright light with us.
I’m so sorry—I understand that there may be a new ALK inhibitor in trial by the end of this year. In the meantime, might your husband be eligible for LDK or one of the other ALK inhibitors? Also, is it possible that you could schedule a consultation with Dr. Alice Shaw at MGH for a second opinion? She is my oncologist and really has her finger on the pulse of anything new out there….and she is brilliant and quite compassionate. I wish you the best of luck…
http://www.massgeneral.org/doctors/doctor.aspx?ID=17279 (Dr. Shaw’s contact info).
Stacy Raye’s mom and I were just thinking about you and so excited to hear you are here!!!! Heather (Stacy’s partner). We are both well, living life with as much love and happiness that Stacy brought into our lives.
Heather, I am still here! And so happy to hear that you and Stacy’s mom are carrying on with love and happiness both. Certainly that is one of the lessons of loss—the love stays; keeping the beloved alive in our hearts.
Hello all, stumbled into this site today – my name is Craig. I have been diagnosed with stage IV non small cell lung cancer and my journey has jsut started…scans, xrays, etc and just had my first chemo treatment this last week. It is all a bit overwhelming…lots of questions running through my mind. So far the cancer seems limited to the left lung but is at or in the lining wall.
Hey Craig, sorry you had to join this club and yes, it is all overwhelming. The fact that you are already looking for information and support online is (to my mind) a good sign—you need to learn to be your own advocate. I don’t know if posting a comment here will generate responses from others, but I can suggest that you check out the online support group I belong to—if you introduce yourself, you will definitely make connections. I have been a member for more than five years now and it is a really important part of my life (and a major component in my continuing survival). Here is a link:
Best of luck,
Thank you so very much! I will check in on the site – feeling alone with this presently, believe knowing others will be helpful. Craig
Date: Tue, 24 Sep 2013 22:34:45 +0000 To: email@example.com
Hi Linnea, I am contacting you from Australia. My Husband was diagnosed with nsclc 2&1/2 years ago at the age of 41. He has had a left lung pneumonectomy, 3 x chemo sessions, 2 x radiation sessions, tarceva and due to the spread of his disease to his lymph system is now about to start on Xalkori. It is fabulous to find your site and your like minded positivity. I too will have a look at your support group (inspire) Thank you!
Tania, your husband has been busy since his diagnosis! Here’s hoping Xalkori slows things down a bit. I wish you both the best, and stay positive—even if attitude doesn’t necessarily affect outcomes, it has a huge impact on our daily lives. Why not make the best of each and every day?
So happy to find your blog (this is my first time ever blogging). Was diagnosed with Stage 2b adenocarcinoma (and melanoma stage 3a) four years ago and have been blessed with four wonderful years. Lung cancer is now stage 4 in two lymph nodes and the sternum. Started on Almita this week at Dana Farber in Boston. Your blog is giving me hope. Am working on all positive energy things for my body to help like meditation and yoga but is there something else I should be doing while I wait to see about the response to this drug?
Your site is very moving and gives hope to others, and hoping it will for my father, I’m writing to you as my father had 2 lobes of his lung removed 6 months ago followed by introvenus and chemo and was advised it was clear from the scans but over last 2 weeks has been coughing up stuff. He is having a pet scan on tues as the cat scan showed something up and my mother is furious as the specialist and consultant have not advised what come up on the scan. my mother phoned the specialist for 3 days in a row to try and get him booked in for a pet scan and to ask what they see on the scan. in the end she phoned the McMillan nurse in which she booked him in as the phone was going onto answer phone for 3 days. she had spoken to the gp in the end and he said they don’t know what they are looking for as yet but something has shown up on the cat scan. We are all so anxious and angry we feel like he is being treated as a number and not a person. I told my parents to wait until pet scan results come back and ask the person doing the pet scan to try and move results from scan quicker and as urgent. If it has come back what medication would you suggest to put to the specialist as a possibility ? And how do we put it in words to the consultants and specialist to tell my parents esactly what is going on? I really feel that they should be treated a lot better
Leanne, I sense your frustration and it is justified. So much of this whole journey is hurry up and wait and yet there is no excuse for not being able to get through to a person. If the stuff in your dad’s lung is cancer (and remember, it could still be something else, such as an infection) then of course you want to know what his treatment options are. All of our situations are different, but particularly if your father has adenocarcinoma, you should ask if he has been tested for genetic mutations, because if he is positive for one (EGFR, ALK, KRAS…) sometimes a targeted therapy is an option. Best of luck to all of you….and hopefully you will get some answers soon.
I have stage 3 adenocarcinoma lung cancer. Waiting on disability come thru for a Petscan. got chemo n radiation for 6 weeks n now just wondering n waiting. God bless each n everyone of u.
Cathleen, the waiting and wondering is so difficult. Best of luck on that next scan…you are in my thoughts.
Linnea, just came across your blog via Facebook from a LUNGevity post. Love the attitude! Keep it up. I’ve tried to keep the same positive perspective with my own blog and journey. Take care.
Hey Craig—I’m a little late in responding, but thanks for introducing yourself. I’ll check out your blog and best of luck on this journey.
Just saw you in the article in today’s NYTimes Magazine. Also keep meaning to tell you – we both know Tom Marsilje (in addition to Anne Bunn). What a small world.
All the best, Marie
I am so sorry for the loss of your friend, too.
Marie, thank you all on counts. And yes, Tom had mentioned to me some time ago that the two of you had connected—he’s wonderful and I know he thinks the same of you. And Anne Bunn as well—-sometimes it does seem like a small world. Take care my friend—I know this part of the journey is sometimes rocky.
Hi Linnea, I am 39, a 7-old boy’s mom, coming from Hong Kong and find yr story very encouraging!
I was diagnoised stage IV in June 2013. My Dr still cant find the primary site but believes it is LC as I hv tumors in my trachea. I am a non-smoker but got negative in all gene tests and is waiting for the result of ALK. I hv avastin/carbo/taxol for three rounds by Sept and the scan test is clear, and is expecting to finish all six rounds by x’mas. I also hv radio for 28 times on my trachea. I hv little side effects after chemo just I lost my voice after having radio theraphy.
Unlike the states, we seldom talk openly in Hong Kong, as LC patients are expected to die soon. There is little support. We have to pay all the testing and medical expenses and the public hospitals just give very little service for us.
Hope I can find a way out as u did! Have a good day!
Maggie, it is frustrating to me that not everyone has access to equal care. However, it is a good sign that you are being tested for mutations. It also sounds as if you have responded well to initial treatment although the loss of your voice must have been troubling. Tell you what—defy expectation and don’t die soon. I’m not trying to be flip; seriously, think of yourself as exceptional. It cannot hurt and I believe it can really help. Best of luck…
Thx Linnea for yr kind reply. As I fail in the gene tests, my Dr proposed me to do chemo maintenace after the 6-cycle treatment (might be a chemo drug + Avastin). My problem is 1) financial burden; 2) whether it is good to keep injecting toxic to my body and then finally I will die of bad kidney or liver but not cancer. But I read many sharings in inspire.com that so many ppl hv taken chemo maintenace for years. I am not sure if I can borrow their experience as most of then are at their 70’s and 80’s. Linnea, do u hv friends who are also 40’s and they hv long-term chemo maintenace? Thank you and have a good day!
Maggie, I actually think that being younger is an advantage as far as your general stamina and health. It’s tough—the things that kill the cancer often are toxic to healthy cells. However, I have been in treatment the majority of the time since my diagnosis in early 2005, and I’m still here. I was 45 when diagnosed—will soon turn 54. We are all different, but I encourage you to think as positively as you can. The last time I had started chemo (eight months ago) it hit me hard, but I just kept repeating to myself—‘I am the strongest person in the world’. Sometimes we are able to become (in some small way) that which we visualize. Stay well….
Linnea, thanks for your sharing. The road is tough and you are a fighter. I have to be too as for my 7-year old son. I just hope I can have a clear scan again after cycle 6 (I had a clean one done after cycle 3) as Dr said it will help my maintenance plan.
Dear Linnea, thank you for your inspiration. What a journey huh? My husband was diagnosed with a primary adenocarcinoma about 18 months ago. Since then he has had two tumours surgically removed on separate occasions in just under a year. Last Friday we were told by the surgeons his latest scan shows two more lesions, one in the right lung and one in the left. He is 52. We go back next week to discuss the results of MRI and PET scans he will have this week. Currently we are in the process of absorbing that more than likely he is now in stage 4 category and the lack of options and optimism. Despite this we are hopeful and investigating as many ideas as we can, including Ralph Moss, Gerson, hyperthermia and some chinese super antigens……
Love and light to you, Simone
Simone, as I attempt to catch up I noticed some unanswered comments on this post—yours included. I apologize. It has been some time since you wrote and so I have no idea where things are with your husband. My hope is that a suitable therapy was found and that he is responding. Without knowing more I am hesitant to add anything—despite my initial lack of response, I would like to hear an update. And thank you for the light and love—right back at you.
Asking for prayer right now. My dad just had chest X-ray because of a cough that won’t let up. He is 75 he had an X-ray two years ago which showed some scar tissue. Now they say there is a mass in that spot not sure what it is but it is 8 by 10 cm. waiting on a ct scan. I lost my mom 4 years ago to cancer and then my best friend a year later and through all of this I have been dealing with a shaky marriage to someone who deals with severe depression. Ignoring the fact that I am 50 have had a heart attack. Two tumours removed from my uterus and gall bladder surgery all in the last 6 years. I am not sure how I am going to handle all this. My dad is so special to me we are still praying that this is something else that is easier to deal with. Anything else at this point. I have been on the Internet getting more and more upset and defeated until I read your blog. Bless you for giving us all hope its what we desperately need more of
Melody, I’m sorry to have taken two weeks to respond. I would imagine that by now you have more of a treatment plan underway and maybe it all doesn’t feel so hopeless. This is tough stuff—all of it and obviously overwhelming. I wish I could reach out and give you a hug—I hope you will avail yourself of some supportive counseling. I see a social worker at the hospital monthly and she has helped me keep it together during the roughest of times.
Prayers for your dad—and you as well.
Thanks for your blog. What a world we are thrust into with a LC diagnosis! A chest x-ray found the culprit on 12/22. I’ve been through one round of chemo and start radiation/chemo again Monday. Would love to communicate off-blog if you are willing. Thanks! T
Teresa, my apologies for not responding sooner. It has been a time of many challenges for me (not all about lung cancer) and I have not been good about attending to my blog. I have your email and will send a personal message….
Thanks for your story.My husband has stage 4 metastatic lung cancer as well.He too is doing well.He believes that he can beat this disease and I hope and pray that he can as well.He is on Tarceva and last CT scan the tumours had reduced by 50%.I pray to St Gerard ,worker of miracles every night that he will continue to heal.So far my prayers have been answered.I pray that eventually there will be no evidence of disease.
I forgot to mention that they gave my husband Stephen 8 weeks when he was first diagnosed it has been 2 years the 23rd of March.
Maree—same apology I have given other commenters; sorry it took me so long to respond. I am happy that your husband has responded so well to tarceva and I hope his response is a sustained one. Two years is great—may he have many more.
I like you was given a terminal diagnosis. I was diagnosed with Small Cell Lung Cancer extensive stage on my 37th birthday February 12. I went through chemo from February to September then radiation. They said it wasn’t going away and tried another chemo that made me so sick I was bed ridden for more then 60 days. My body couldn’t tolerate any more chemo and I was told to go home and spend time with my teenage sons. They gave me six months. Well I’ve always been a prayer. I prayed to live long enough to see my sons graduate high school. This Feb 12, 2014 I celebrated my 49th birthday and watched my oldest graduation march at Purdue university with his bachelors degree. I’ve not had any treatments since October 2002. I’m not in remission or NED. With the grace of God I live with cancer. Over the past 12 years I’ve had 15 bouts of pneumonia. The radiation treatment scarring plus the pneumonia scarring now has me on oxygen 24/7 but I’m still alive. Franciscan Health Alliance put me in a Living Miracles calendar last year. I’m Mr. October 2013. That always makes my wife laugh. I am proof you can live with cancer.
Great to hear that you are living with cancer.It is so wonderful to know that you were able to see your child graduate.Our grandchildren turn two in June.They are beautiful twins and Steve has been able to celebrate their first birthday and soon their second birthday .I still cant believe that Steve is still with me.I was so scared of losing him when he was first diagnosed I couldn’t even imagine that he would respond so well to the Tarceva.I live with hope that we can enjoy many years to come.This is my second marriage and Stephen is the man of my dreams.We have been together 14 years but only got married last year.My aim is to celebrate our 1st anniversary in June.Thanjs for responding it great to talk to such a posituve person.Ps whst country di you live in.We are in Sydney Australua
Maree and Steve
I am only just now getting to older comments and I apologize. My, what a lot you have been through; living miracle indeed! And Mr. October to boot. You also bring up something near and dear to my own heart—there is so much emphasis on being cured and frankly not enough on living with cancer, which many of us do (and will do for the rest of our lives). Thanks for being a poster child for miracles and I am so pleased you left a comment. Keep beating those odds.
It is good to hear a success story.I am 54 had a Anerousym surgery 1-15 I was sure hoping no more problems.I an so confused.My wishes r to not go the hospital. To dye at home. That would so hard on my children.But I lost a brother who passed at 50. I TO HAVE LUNG CANCER IN BOTH LUNGS
.ONE LG BASEBALL@TRYING TO ALREADY METALIZED.THEY WANT TO SEND ME M.D.ANDERSON IN HOUSTON THEN TREATMENT WILL BE IN AUSTIN.TX I DONT WANT TO QUIT MY ANEURYSM SURGERY 3RD morning Dr were amazed.I looked terrible but I made it. I DONT WANT. TO HURT OR GET SICK AND PAIN AS U SAY.IF I AM LUCKY I WILL FALL ASLEEP AND GO TO “GOD” IN PEACE NOT PAIN.UR STORY GIVES ME HOPE.THANKS FOR SHARING UR STORY AND PRAY FOR ME.
Debbie, I feel anxious responding as it has taken me so long and I know your situation is tough. However, it sounds as if you are too. I pray that you get this message and that you are hanging in there.
Hi Linea, my brother in law 39 years old a father to be in 2 months just got diagnosed with a lung cancer stage IV it is in both lungs, hips, shoulder and spine bone and four spots in his brain. It feels better to see that someone is surviving for a long time. I hope he gets to survive and see his daughter growing. Hope you are well.
Rose, again, it has taken me too long to respond. I hope your brother-in-law has found an effective treatment. By now there is a new member of his family as well. Best wishes to all, and please forgive my delayed response.
I started this cancer journey in 2007. I had a stage 1B nslc adenocarcinoma slow growing tumor. It was in my left upper lobe lung. After a lobectomy of my upper left lung (it was 3.0 cm x 2.7 cm,) then had two rounds of cisplatin/taxotere. I was stable until Jan, 2012, when the reoccurrent metastatic nslc adenocarcinoma slow growing tumor in my mediastinal area. I was not a candidate for surgery. I received max dose of radiation along with two rounds of carboplatin/etoposide. Stable until October, 2013. I started coughing up blood (hemoptysis) and had a bronchoscopy biopsy to determine the source. The results were recurrent metastatic nslc adenocarcinoma slow growing tumor in my tracheal and bronchial, stage IIIB/early stage IV. Now the plan; am getting ready for three rounds of pemetrexed/carboplatin. Then scan and see how it is progressing. My oncologist is sending the biopsy out for more testing to see the make up for it, and depending the results I may be able to take another medicine. He told me since the cancer has come back three times, it will probably never be cured. So his plan is to maintain the cancer and keep it down. When it starts to grow again, start the medicine up again. I have made my mind up to treat this like any other chronic disease, maybe someday they will have a cure for it. I am going to consult about a macrobiotic diet. I am also a Christian and believe that I won’t expire until my God says so. I have given this over to Him. They may be some reason why I am going through this, our thoughts aren’t His. I do know from the last two bouts with this, I have grown to be a stronger person in my faith, and several people have stopped smoking and watch what they eat now. My pastor told me I was an inspiration in my faith to others, I am not bragging about me, but give the glory to God as He is the one in charge of my life. In Him I find a great peace and comfort. The fear is no longer there, I have hope! I will live everyday I have as a blessing from above and will take in everything the day has to offer and make the most of it.
Sandi, I apologize for taking so long to respond. By now you may have learned whether or not you have any genetic mutations (I assume that is what your doctor was testing for). I too live with disease that continues to flare; I view each treatment as an attempt to beat it down for a period of time knowing full well that it well flare up again. Keep the faith!
Hi I am a 47 year old woman and have just been recently diagnosed with stage 4 adenomacarcinoma and due to having the mutation EGFR, was able to start a course of Tarceva, with Avastin I fusion every 3 weeks. I’m still trying to come to terms with its overall implications although I have had a good response to treatment so far have just had my 3rd cycle. I’m quite confused about some of the side effects and not sure if they are caused by the pain meds I am currently or by the cancer or its treatment? Does any one feel pain in both shoulders for instance and restricted movement ? This disease has come completely out of the blue as I had no symptoms until I was already at stage 4.
Would love to compare notes so that I don’t feel so isolated.
Julie, it took me too long to respond (I am sorry) but I am happy to, as you say, compare notes. I was on Tarceva for only two months and have not had avastin so I have a limited perspective on those side effects. My advice is to discuss anything concerning with your team, as it is always important to rule out causes other than side effects. Please let me know if you’d like to correspond and or talk—this can be a terribly isolating disease.
Wow. Your doing wonderful and I hope you continue. I am going to send this to my sister. She just found out she has lung cancer and it is just so hard for her and myself. She is my best friend aswell. Stay strong Linnea.
Hi Linnea, in many ways your story is similar to mine. Two months ago with no warning I was diagnosed with stage 4 lung cancer and given less than a year. In fact the cancer kept growing with chemo and I kept getting sicker.Since getting a 2nd opinion and testing positive for ALK and starting Xalkori. I feel like I’ve been given a second chance and new lease on life. In 2 1/2 weeks the tumors on the lung shunk by 50 % starting medication. At 35 non smoker, an urban planner, and co air quality coordinator for my county, this is unbelievable. The same hospital I gave a presentation on the dangers of air pollution on Earth Day, 9 months later I am hooked up to a chemo bag in the same bldg. I would like to talk to you more about your experience. Can you email me back? Thank you, Dan
Linnea, I am so inspired by your story. I am still young, but when I grow up, I wanna be a doctor who helps people with lung cancer. Its nice to see a person never giving up despite the struggles of life.
Thank you Marie, and I hope you shall 🙂
Thank you, thank you, thank you Linnea. You’re such a hero. I’m SO GLAD you’re sharing your experiences and optimism on the internet.
Thank you Jess. No hero here, but I will cop to being persistent 🙂
I am very glad the Xalkori has worked so well for you. My husband John, age 59, a handsome surfer, snowboarder, runner, succumbed to stage IV lung cancer with the ALK mutation just six weeks from diagnosis last August. . He had only been on Xalkori for 3 weeks.
The cancer had already spread to his spine and other bones in his back and rib cage, so he was obviously diagnosed too late for any miracle drug. He had been in pain for many months, maybe even years, but had always attributed it to muscle pain from working out so hard. We were both in denial. They say lung cancer has no symptoms until stage IV. John never had any breathing problems, just back pain, so I am curious what led you to be diagnosed so early?
It wasn’t the cancer that killed my John but rather sudden onset pneumonia (pneumonitis) that the doctors thought was a rare fatal side effect of the Xalkori. But I am not so sure. I personally think it was him not eating and vomiting from the pain narcotics he was taking that compromised his immune system, and from lying in bed for about 3 weeks.
Based on how active he was, everyone who knew him thinks it was a blessing for him to go so fast, never having to suffer through the indignities of lung cancer surgery, chemo, radiation, etc. but we had no time together, and he was my only family, no kids – we were together 35 years and still in love. My heart is forever broken.
I keep wondering how things might have been different if he had gotten a lung CT when I did 4 years ago, but he refused. We were both former smokers.
I wish the doctors had told us the truth about how little time he had. They painted a very rosy picture and made it sound like he could live at least a year, and maybe more with the Xalkori.
I wish you great success with the second generation of Xalkori. You are surely one of the lucky ones!
Diane, your story breaks my heart. It is so hard to predict the course of this disease and though it is a comfort that your husband did not suffer, for you this was so brutally quick. Have you considered joining a support group? My best to you…
Thank you Linnea for a wonderful blog on cancer, the fight, the faith and treatment opinions. My boyfriend of 16 yrs was diagnosis with stage 4 adenocarcinoma lung cancerin 2013. One year later we are still trying different chemo options, Teddy just finished a round of Gemzar and Taxoter.
Tammy, I start with another apology (it has taken me so long to respond). I hope the Gemzar and Taxotere was effective—I will ask, has Teddy been tested for genetic mutations? Targeted therapies and/or immunotherapy can be options in addition to chemotherapy. Best of luck,
God bless you so much you have been fighting this horrible disease, I wish you back to health and a long life!
I have a few tiny noguals in my longs and I go back for a catscan in June to see if they have grown! It’s a 4mm -6mm I’m so scared and I’m not a smoker but have been around smoker
I’m 37 with 2 kids and I’m so scared! I need to prepare my self just incase but I don’t think anyone can prepare for something like this!! But you give me hope!
God blesss you and I prey for you to get well fast!
It has been a long time since you left this comment and I apologize. I hope that in the meantime you have received reassuring news. If not, please know that there are options. I would love to hear from you again.
Thank you so much for sharing your story, my mother was recently diagnosed with Lung cancer, She seems well at the moment although some days she feels bad and coughs a lot, my family and I keep our hopes up, she’s a warrior and is fighting with all her strengths. Your story gives me strength and hope. It is such a painful situation to go through all this, just the thought of loosing someone we love so much it just reminds us to love one another every single day because we never know if it could be our last.
I was diagnosed with lung cancer in 2001 at the age of 49 and had successful surgery with my upper right lobe removed. Last week (April 2014)I was given the devasting news I now have a growth in my left lung and my consultant does not think I have enough lung function to withstand surgery again or radiotherapy as my other medical conditions have become very complex. I am in the UK and it would seem reading your blog that in the USA you are offered far more information about what type of lung cancer you have and more information about different types of treatment and trials and I am at a loss to know what questions I should be asking. I have always been told over the last 13 years after every check-up scan that I am in remission and not cured – I have fought very hard to disprove this hence my despair it has come back. I would appreciate any suggestions as to what I should be asking
MJ—my apologies for the length of time it has taken me to respond. First, I am sorry that you are dealing with recurrence. As for what sort of questions you should be asking, I would inquire about targeted therapies and whether or not you have been tested for genetic mutations (this may require a new biopsy) and also ask about immunotherapy. Much has changed in the treatment of lung cancer since you were initially diagnosed and there are certainly more options beyond radiotherapy and surgery. Best of luck.
I work with DelImmune, a leading provider of immune system supplements. I wanted to reach out to let you know that we’ve just released our list of “60 Top Cancer Blogs for Advice, Support and Inspiration,” and you’ve made the list. Congratulations! You can see the full list here: http://blog.delimmune.com/2014/05/top-cancer-blogs/
After following a few blogs chronicling the journeys of families, we decided to look around at the many cancer blogs on the web and realized what an incredible wealth of comfort, advice and simple understanding exists in the blogging world from individuals sharing their cancer journeys, family members chronicling the emotional journey of a spouse, child or loved one with cancer, and advocates who work to raise awareness and work towards funding to find a cure every day. We created this list as a resource for families and individuals who are going through their own journeys and could benefit from just feeling like there’s someone else in the world who actually understands what they’re going through.
We wanted to recognize you for your bravery and strength, and willingness to open yourself up to the world in a way that’s touching so many lives. Thank you! We’ve created custom badges for the blogs that made this list as a way for the blogs that made this list to recognize the tremendous impact you’re making. If you’d like to install a badge, simply copy and paste the code found at http://blog.delimmune.com/2014/05/top-cancer-blogs/#badges
Finally, we’ve created a Twitter list that’s easy for everyone to follow: https://twitter.com/DelimmuneV/lists/top-cancer-blogs
It would be great if you’d share this news with your Twitter followers and readers!
Thanks so much for your time, and congratulations again! Your work is much appreciated by many.
Thank you Angela, I am honored and hope that my blog can provide some comfort/inspiration.
Thank you for the blog. One year ago I was diagnosed with IIIA Adnocarcinoma. Surgery removed my right upper lobe. PET & MRI showed no signs of cancer. Then Chemo & Radiation at the same time which ended 9/8/14. At the end of October a CT scan shows a new nodule in my lower lobe. So I have to wait for it to grow in order to see what it is. Too small to biopsy. Waiting is hard. But I try to live my life a normal as I can. We will fight!
Amber, watch and wait is hard but you are wise to focus on living your life in the meantime (a good philosophy no matter what). I wish you the best, and yes, we will fight!
I have stage 4 lung cancer and I am glad you did this. I am just going on a year right now I have a long way to go. Just trying to stay hopeful and positive.
Hang in there Tina. It’s a tough road but you’re not alone!
I love your story of hope!!! Hope is what I need for my husband right now. Is there a way for me to communicate with you via email?
You don’t really give me a choice, I just have to follow you. First off all…I wish you all the best and from now on you will be in my thoughts. I don’t have cancer, but my sister-in-law just got diagnosed with stage 4 lung cancer and I have a very hard time finding the right words. She smokes and so did I (I just stopped a few month ago after 35 years of smoking). I hope you don’t mind me following your blog!
I love that there are many so many positive posts here. My husband, a 52 yr old non smoker was diagnosed with metastasized lung cancer on June 11. See his page on caringbridge.org under Gordon Furlong. He is incredibly positive and started XALKORI 2 weeks ago. We are hoping for the best and like I said, I am so encourgaged to see the stories of surviving many years on this drug. Thank you to all for sharing their stories.
Your story is very inspiring…I’m 31 and been diagnose stage4 lung cancer with pleural effusion in my right lung..I been mark with nsclc…just like you I thought I would never get lung cancer because I never smoke in my life…went thru chemo first line treatment and now I’m on xalkori crizonitib for about 7month now and praying for the best to get rid of this awful disease..which is uncurable 😦 knowing that you still here after 6 1/2yrs of treatment and still going strong, it give memory hope to believe in my medicine. Thank you for your story.
I was inspired by your story. Now I hope you can give me some guidance. My mother was just diagnosed with lung cancer, probably stage 4 but still doing more tests (biopsy to come). I am a US citizen but my mother is Portuguese and lives in Portugal, how does one get enrolled in a clinical study such as the one you were in? I would appreciate any help you could give me. Thank you very much and I’m so glad that you’re doing so well.
I am so inspired by your blog. My grandmother who was not a smoker either passed away in March after only a seven month battle with stage two NSCLC. After losing her, I wanted to have a job where I could work in her memory every single day. I now work with the American Lung Association and get to be part of the fight to find a cure. I would love to talk to you about a new program we have called LUNG FORCE Heroes. Really love to get you involved in this if you are up to it. Thank you for inspiring so many to keep fighting.
Thank you for your kind comments and I am sorry about your grandmother. How wonderful that you have honored her memory by fighting for a cure. I would definitely be interested in speaking to you more.
That would be great! Could you send me an email so we can talk? firstname.lastname@example.org 🙂
Hello Linnea, my most Sincere Hope that you continue to do well and can continue with your heartfelt and inspiring blog.
My wife Susan was diagnosed summer 2013 with Stage IV Lung Cancer with metastisis to upper/neck vertebrae and pinching of spinal cord and already beginning to cause paralysis of her arm. Radiation was given and halted/shrunk cancer there enough to regain arm movement/control.
Since then she has undergone Cisplatin/Gencitobine chemo last Fall, but lung tumor grew somewhat. Radiation given to shrink lung tumor and did! January 2014 we found chemo had travelled into sacrum and pinching nerves within canal and at joint of last vertebrae and sacrum. Radiation given. Tremor in arm resulted in trip to ER for CT and found 2 brain tumors/swelling. Then had full brain radiation. A few weeks later had pain overtake her pain med regime. Got her meds resolved and started on Tarceva. Did well for 5 months but then last CT had shown some progression of her Cancer ( some new small spots in both both lungs and some brain tumor swelling had returned. Taken off Tarceva and planned for 4 cycles of Cisplatin/pemetrexid. Got thru 1st roundhouse problem but 3 weeks later she found old sacrum site flared up causing significant pain and inability to be on legs/walking…..we are back in hospital and advised no further treatment can be given. Prognosis is likely 2 months since poor expectation to comeback from current weakened and pain state.
Even though not as toxic as IV treatments, trying other targeted drugs such as Crizotinib/Xalkori is apparently no feasible because of weakened state.
Dan, your wife Susan has been through a lot and it must be very difficult to hear that no more treatment is advised. Was she given tarceva because she was positive for an EGFR mutation? If so, there may not be another targeted therapy available as Crizotinib/Xalkori would only be prescribed if she were positive for an ALK mutation. I don’t think her weakened state would preclude these medications, but her mutation status might. My thoughts are with you both.
hey linnea your story is just amazin n an inspiration to all.my mother has recently been diaognised with lung cancer stage 3 and she started chemo..it is really tough seeing her trying to breathe and the whole family is on her side.she is also a non smoker.your blog is insipiring and i hope my mom can also get well soon.from Nairobi ,Kenya
you are a true hero! thanks for sharing
You’re are a courageous woman. Living a normal life always helps.
I was recently diagnosed with lung cancer after being treated for TB which I did not have given the symptoms. The symtoms I had was a dry cough and shortness of breath. It took over a month to be diagnosed . In the interim I was taking TB meds which made me sick. My cavitary lesion is 5-6 cm. I will have surgery four days after my daughters big party. It’s keeping me busy and makes me happy to be creative since I am an Artist. Subconsciously I am afraid. I keep busy and refuse to feel sorry for myself. The only thing I can’t do is go to the gym, do yoga or walk for miles like I used to. I plan on doing what I did before i was diagnosed once I recuperate. I wish you all the best! I will send you good Karma!
Nina, I am a bit behind on my blog but I wish you the very best. And yes—do assume you will return to normal life, with sharpened awareness and greater gratitude–good qualities for artists and people too 🙂
Hi LinneA ,
Is there a way I could contact you.i am inspired by your story .
Sure Jaime—just leave another comment with your email and I won’t publish it but will get in touch.
my mom just had an xrays for a cough of 6 weeks it should hilar mass and tumor is 10x9x7 and suggestive of
bronchogenic carcinoma and bilateral masstasis. we are waiting for CT SCAN my mom is honestly scared and so am I (she’s 60)
Hi Linnea can i please email you. My mum has just been diagnosed with inoperable terminal adanocarcinoma lung cancer and has 3 mths to live we want to try clinical trials but we know nothing about cancer please advise. Kind regards. Tanya
Hi LinneA ,
Are there any side effects about PF-06463922 ?
Lots of power, love and respect
Thanks for writing this blog. Almost 30 years ago I was treated for Hodgkin’s. Last year I was diagnosed with stage IV lung cancer. Almost a year later to the day of chemotherapy and now crizotinib, I am finally getting physically strong enough to return to work and continue trying to increase my activity and participation in life. The psychological and emotional strength is a bit more of a challenge; but we are managing that, too.
You’re blog is an inspiration that many of us need. Thanks for sharing that blessing with us all.
Linnea. Wow. You are a beacon of LIGHT giving hope and inspiration to so many. My name is Leah Candace, and the man I have loved for so many years was just diagnosed with stage 4 lung cancer. His name is Ric. There is also a small mass in his brain. He hasn’t even started his first treatment yet…You are so wonderful. If you don’t mind me asking where were your treatments? Can we communicate by email? You are a gift from God and I hold for you a vision of highest possible good. Thank you for sharing the sacred journey of your life story You are in my prayers.
Blessings of Light;
This is the inspiration I needed to get through today. My mom was diagnosed with bone mets and lung cancer one week before Christmas. I am always dad and afraid. I am the only child of a single mother. She it’s all I have and no one loves me like she does. The doctors are so slow she has a pretty and is receiving radiation for her huge mass on her sternum and hip but they haven’t told us what stage or type of lung cancer. This is her second time with cancer.She had a rare form of cancer called choriocarcinoma when I was a baby. By the time they figured out what was wrong, it had spread to her bladder and lungs. Chemotherapy and God cured her before so I am putting it works again
I have Stage IIIB lung cancer. One tumor top right lobe. The cancer has metastasize to my lymph nodes in the chest and neck. I do not have to mutation EGRF or ALK. I am being treated with carboplatinum and Taxol. And a targeted agent Avastin. Diagnosed oct 2014. Three cycles in first treatment. No liking this at all. No more chemo. No more chemo.
Hi Linnea, Thank you! My wife was just diagnosed with stage 4 lung cancer ALK positive. I find this encouraging and glad to hear from you!
I was diagnosed stage 4 non smokers lung cancer in July 2012. Initially treated with radiation to lungs so that I could breath and talk better. Then I had radiation to lower spine, hips, pelvis to relieve pain so I could resume walking. ALK mutation was identified. Gamma knife surgery for 4 tumors in brain found in Oct. 2012. I finally got to start xalkori in Nov. 2012 and am still taking it with good results. I did have a lot of problems with fluid build up in my body. My oncologist said my body could not tolerate the full dose of xalkori and I have been on half dose since 2013. I have had two more gamma knife surgeries for more tumors in brain, the most recent being last month. I have made friends through the internet with others with the same cancer and that has been a big help for all of us. One of these friends just found your blog and told me about it. It is very encouraging and reassuring to learn that you stayed on xalkori for 3 years and that someone else did 4 years. I have my next PET Scan and brain MRI coming up soon and I have been nervous that it might show the drug had stopped working. Now I can relax a bit. It is also good to know that the Novartis drug has been approved.
Thank you for being the pioneer in the clinical trials for both drugs. Thank you too for this blog. It has helped me and I can see you have helped so many others. I have shared my journey on facebook trying to help others.
My daughter is getting married soon. I am thankful to still be alive and to celebrate her marriage and my husband’s and my 50th wedding anniversary in 2015. Wishing you all the best as you continue the journey. Donna
Your story is inspring and remarkable. My sister, 32 and non smoker, was diagnosed with ALK and recently finished a round of chemo that didn’t work. Her cancer has spread everywhere and we’ve just found out. She started on the ALK treatment yesterday, but I’m afraid she needs to see someone who specializes in the mutation. Is there a doctor you can recommend to me? Someone I can call to help?
We’re in a dire situation and just learning about this unfortunate situation and anyone you could recommend would be helpful.
How’s your cancer doing linnea?
My friend has been recently diagnosed of this disease, we all have hope and pray continuosly that he will get better on Xalkori, but he doesn’t.
Since you are a survivor do you think you can contact him and give him hope?
I thank you in advance,
Hi Linnea, I would love to speak with you more about your story. My mother was currently diagnosed and also has the ALK mutation. I still have so many questions and hope maybe you could provide some answers, some support, and over all faith in this whole situation that has just absolutely blindsided my family and I. Your story is incredible and I’m sure it’s exactly what all of us need to get through this. God bless.
Your an angle , I found your blog the very day I needed it. I went to the Dr in December because I had swelling in my leg and found out after a series of test that I had Stage IV lung cancer .it was a schock because like so many people on this blog I never smoked. I started xaltori lat week. My shortness of breath seems to be getting worst so today was my first day feeling a lil down I found your blog and I feel a lot better. I feel blessed that I have been able to live for 63 years and I hope to live many more but I know it’s in gods hands .
Thanks again for all the people you help, think about all the people who you have and do not write a comment.
Pingback: Infections and Diseases | unit43assignment4
I would love to use this story in a paper that I am writing. Is there a way to contact Linnea to ask for her permission? Thank you!
Did not see any comments from Linnea, Hope she is doing well.
Hi I was looking for some advice if u have lung cancer and get 1 third of yr lung out and the doctors said they got it all and u have to do a few months cemo just in case …. If it does NT come back do u still have a long life a head of u or does it cut yr life short someone said to me that u r only expected to live another few years is this ture?
Susie, I don’t think anyone can really accurately predict how long you will live. I have now lived for so much longer than I was expected to. The fact that you now have no evidence of disease is good reason to hope!
What an inspiration you are! I was diagnosed with inoperable and incurable NSCLC in July 2014. Stage 4b Adenocarcinoma. Mine is a superior sulcus or pancoast tumor. I was treated with radiation and chemo ( carboplatin & paclataxol). I won’t bother to list the hideous side effects. At any rate I have minimal tumor shrinkage and now my oncologist says my cancer is stable. He wants to do the lets watch and see what the cancer does before we do any more treatment. I’m uncomfortable with that response and have told him so but he seems positive that we can wait. Would you get a second opinion? If you feel uncomfortable answering this I understand. Thank you. Your words give me hope.
Rick, I apologize for a delayed response—I have done a lot of watching and waiting. Sometimes it is the best approach when side effects are too harsh and/or there is not an ideal therapy. I guess my own level of anxiety would depend on how much cancer I had and how quickly it had grown in the past. However, stable is always the next best thing to resolution! Stay hopeful and now that I am back on board with the blog know that you can contact me any other questions or even just to chat with someone else going through something similar to yourself.
I read your blog and wanted to reach-out to see whether you would be open to a brief interview for Thought Catalog? I was moved by your resilience in the face of your disease and would love to include your voice in the article I’m writing on recent advances in lung cancer research thanks to immunotherapy. Your perspective would ground the piece in real-life experience, and would raise awareness around the importance of furthering cancer research.
I can be reached at email@example.com.
Thanks so much,
Hello! Any chance of getting an update? I worry about Linnea, I’ve grown very fond of this blog.
I follow your blog and think it is a great resource for lung cancer information. I wanted to reach out about a new study to understand why lung cancer occurs in healthy, smoke-free young adults–especially women– and to identify lung cancer gene mutations that may help impact their treatment. Would there be a good email address to contact you at?
Dear Linnea, I found your blog today, how are you doing now? I am on LDK 378 since six months and are doing well, but I am concerned how long the good days will last, best regards Yvonne Eck, Sweden
Hey linens wow you have tremendous self will and positive mind when I read your story I fill up I live on England on a place called wirral I have metastatic cancer institute both lungs .I was first diagnosed with cancer on my bowel after my operation I thought great that’s the end of it a year later I was diagnosed with secondary liver cancer for which I’ve had a successful resection / I now have metastatic lung cancer I take turmeric for it and lots of vegetable juice I workout and do lots of deep breathing I hope and pray for you linnea God bless you Colin McFarlane
Hello Linnea, I’m new to this site. I was diagnosed with non small lung cancer back in 2008 and had half the lower lobe removed, no chemotherapy or radiotherapy. The cancer came back in both lungs in 2010. I have this rogue gene. It’s been growing slowly but they do not want to treat me with any drugs just yet. They mentioned the drug irressa but they put that on the back burner for when I really need it. I live in Manchester in the UK so I go to the Christies Hospital every 3 months for X-rays and blood test. I have CT Scans every 6months. My consultant says that I am a unusual case. I do feel a bit alone as the lung cancer group which I went to as closed and there are no others to go to.
I was diagnosed with advanced stage 4 lung cancer caused by the ALK mutation. On Xalkori since July 2016 and see Dr
Rebecca Heist at MGH. Inspiration to know that you have lived for 10 years post-diagnosis. What is your current treatment?
I found your blog when I was looking for popular cancer blogs. Having lost my father to lung cancer earlier this year, I know how brave you must be to deal with it on your own. I thank you for having the courage to document your life so it offers immense insights to other people in similar situations.
Hello Linnea, I hope this finds you ,, My husband has stage 3b lung cancer …He had proton radiation in Philadelphia 37 treatments, plus4 chemo treatments.in May thru August.
ms linnea you are an inspiration to me im a 57 yo male never smoked, i was diagnosed in August 2015 i had stage III b lung cancer , shortly after with another pet scan by a highly competent and experienced thracic surgeon FROM UNIVERSITY OF MIAMI ( i live in ft lauderdale, Fl ) we found it spread already to mid chest lymp nodes and i have pleural fluid which biopsies show positive also for cancer. sept 30 i was staged as a stage IV NON OPERABLE. i I started treatment with Tarceva 150 mg daily on my birthday oct 15th. this is my first line treatment to my 7.1 mass in upper right lobe . after 3 weeks i feel soewhst better and the horrible coughing and breathing issyes are less, much less, i have Dulera for every 12 hrs and a rescue inhaler proventil which since about a week ago hardly use but so far once a day . can you help me in what i should seek from my oncologist as the next step , i know i just started trestment and the biopsy showed i had the righr egrf mutations for tarceva. i want to live , i see all you been thru and yiur still with us. your an inspiration to me . please wriite me.
Gregg, I can feel how much you want to live and boy do I understand. That will to live is going to give you some survival advantage—it’s not everything but it can make a positive difference. It is a good sign that you are feeling somewhat better already—your first scan after starting tarceva is going to tell you a lot about whether the treatment is working. Keep your head up buddy—I am coming up on eleven years in April and I know so many others who are living with stage IV lung cancer.
Linnea, thanks for your reply. i see the doc just after the new year rings in . he said he is going to give me my first ct scan after about 6 months on the tarceva which would make it march – april of 2016. do you think i should request it sooner say like after 3 months and also along with an mri to make sure nothing spread to my brain? please take my email and write me there too if you have time. do u mind me continuing here checking in with you from time to time? I mean i see you and hear your story and amazing it is that your still here and going strong, truly your my inspiration.
thank you Linnea
Greg, of course you can keep checking in—please do. As for the scan schedule, I am not an MD but for a newly diagnosed patient six months is a long time to wait. I would ask if maybe three months might be better? And ask about the MRI too. This is your journey and you need to make your thoughts/questions/concerns known.
Pingback: Living Scan to Scan (and trying not to)
most amazing update Linnea ( Olson) ! I simy love your posts and your story of timeline . catch you more here and on our personal emails,
huggs Gregg McMahon
Hi Linnea…I have been reading your story for the past 2 years. My nephew, Donald, was diagnosed at 42 with NSCLC adenocarcinoma, non smoking, stage 4, ALK in 2014. He had WBR and then Xalkori for the next 16 months. He is now in clinical trial (Alectinib w/ Avastin infusions every 3 weeks) at MGH. He was the 1st person there to sign up. He has met Dr Shaw but his oncologist is Dr Sequist. I continue to encourage him and keep him informed of your cancer events. He is really doing well as the cancer lesions have receded or faded away. There’s hope!! Thank you for being you!!
Your new “BFF” Anne of Bedford, NH
Anne, I am sorry your nephew is fighting this disease but he has a useful mutation (ALK) and is in the best of hands at MGH. The thoracic oncologists are really a team so he gets the benefit of a lot of combined brilliance/caring! Stay hopeful. And I can always use a new BFF. BTW, I used to be your neighbor as I lived in Amherst, NH.
Hi, Linnea….You are my angel. You don’t know how thrilled I am to hear from you. I’ll be forwarding your message to my nephew. BFF Anne from the next town over..ha ha
Sent from my iPad
Thank you so much for Sharing your story. Positive stories are hard to find and much needed. I would love to hear from you. My boyfriend is traveling the same road you have been on.
Ann, I am so sorry—it’s a tough road. But there are stories of hope (you just can’t read too much into the statistics. I am sending you my email address, feel free to contact me.
hi there all there is lot of stories of hope I’m good out here so just step over the negative and move forward linear you’re my inspiration you always will be in amazing lady and so was everyone else out here fighting the fight along with myself let’s continue to step forward people unite and fight
Hey Gregg 🙂
Good news today, Linnea! My nephew Donald’s test results at MGH were awesome! The Alectinib/Avastin is working to its fullest. The 22 cancer spots are so small that the oncologist didn’t even bother to mention a measurement. Our family is thrilled!! I have a question for you. Would you be willing to share with me the clinical trials you’ve been on over these past 11 years? I know about Xalkori and that you were the 4th person in the world to try it. Where did your journey take you from there?
Anne from Bedford, NH
👍😀 Happy Sunday to All
It was great to read and see you. My husband has been diagnosed with the same, couple of days back. He is 40 and I’m 35, we have two kids daughter 7and son 5. It is a big shocker. He’s going to be on crizotinib, thanks a lot for sharing, I feel a lot lighter and I believe God used you to minister to my anxiety and worry. Proud of you and happy for you.
I am so sorry and I do understand that shock. Your husband must have a ROS1 or ALK mutation which is good news, as it means he will have more treatment options. Best of luck.
My nephew also was diagnosed with NSCLC, ALK…he is now on Alectinib and Avastin infusions for the past 5 months at Mass General…all is super!! No lesions to measure!!! Keep the faith…Scientists are nearing a longterm survival plan, using combination drugs. God bless!
Anne, somehow I missed responding to several comments including yours. Thank you for your comment and to answer your question I have been on crizotinib, zykadia and now lorlatinib, all in trial. I am hoping that your nephew’s great response has continued.
I just listened to your beautiful video on Lungevity.org. I am an editor at a patient education company and working on a guide to advanced non small cell lung cancer, which will be distributed free to patients in oncologists’ offices and cancer treatment centers. I would love to include your advice/tips to readers–others with St. IV NSCLC. If you’ll let me know an email address, I am happy to send you a PDF of one of our other guides, so you can see what they look like before deciding. You can email me at firstname.lastname@example.org. Thanks, Linnea!
I came across this website and started reading your blogs. It”s been so nice to read of your strength and positive attitude. I was diagnosed In July 2014 with adenocarcinoma stage IV with the ALK gene. I have been taking Xalkori since then and have been doing and feeling great. I initially had no symptoms and went into the emergency when we were on vacation visiting family in Salem, NH with what I thought was a kidney infection. Had a couple of cat scans done and a radiologist noticed something just showing on the scan that ended up being the cancer. I didn’t smoke, but my husband did so was surprised when they said I had non smokers lung cancer. This past month I started having vision problems which I thought was the side effects again from the Xalkori but this time it had more to do with my co-ordination on my right side. I had to have a brain MRI done this week and it confirmed that I have a quarter size tumor on my brain. Xalkori does not work in the brain area, I will be starting radiation and put on a strong dose of steroids which will hopefully work on the tumor. They said the steroids will probably make me irritable and grumpy and I will end up getting a “moon” face, a big round face which we all laughed about, Yesterday was my bad day but now I’m back on the upside and readyt to kick some cancer butt!! I was joking with a friend today and said I’ve been praying a lot to the man upstairs but not saying amen just saying give be a bit and I’ll be back to talk more. If its possible, I’d love to get your email. Thanks for your great attitude.
Kathy from Conroe, Texas
Kathy, I just sent you a private email—I am so sorry for the delayed response and I hope you are kicking cancer’s butt.
thx for sharing your experiences with all people who need hope and support. I think, well I’m sure you are an amazing and inspirating person for all of us.
My sister was diagnosed NSCLC adenocarcinoma, ALK+, PD-L1+ (stage IIIb). Luckily (beackuse we live in Europe), she got also Crizotinib, for two months now. She had back pain, some breath problems, and now after taking crizotinib all symptoms are gone, she is feeling great. We hope the best for the first scan.
I read a lot about ALK rearrangement (mutation), but couldn’t find out in any study the real cause for it. I’m not sure if gene test could show this earlier, and I’m not sure if it is inherited (because the rerrangement doesn’t take place at the child age, but at age of 30-50 years…). My sister’s oncologist said the medicine is also in doubt abot this mater. It’s very questionable why most of the persons are women and not smokers at this age.
I wanted to ask you why you stood on Ceritinib for so short period? Was there a progression on it , because Ceritinib shouold be better against new mutations, as I read. And how comes that you switched to Crizotinib for the second time (because of mutations?); this works?
I hope my sister will get Ceritinib and next generation of the drugs if the desease progresses. I didn’t wanted to burden you with questions, just wanted to share my experiences and hope in fight against cancer. There are realy some good news for the future: immunotherapy (for example the new PD-L1 inhibitors) and targeted therapy drugs, but understanding cells, genes and mutations is still a wide scientific field.
I wish you the best for the future and think your way of life – as presented in this blog – is amazing.
Armin, I am remiss for not having responded to your comment months ago and I apologize. I hope your sister is doing well and if you have more questions (or still the initial ones) I will not be so slow in responding.
Thank you for coming into BPM today and sharing your story. I am grateful that our scientists, MD’s, and clinical team let me work alongside them as an HR partner. You’ve reminded us all why we are here working everyday to help advance these targeted therapies that patients like you need to continue creating memories with your family.
Thanks again, you leave me humbled.
Laurie, I somehow missed your comment as well. My experience at Blueprint was amazing and I am the one who was honored.
What an amazing woman you are!
I have been recently diag with lung cancer originally caught early at stage I went for lobec where they found spread in pleura! I am 45 years old with a 4 year old son and had first lot of chemo yesterday! I also have ALK mutation but in UK you have to have chemo before targeted therapies!!
Your blog and you are inspiring and I pray God continually blesses you along this road
Mel, as we are facebook friends, hopefully you have forgiven my lack of response! I am in catch up mode and all these unanswered comments have finally come to my attention.
Just read your story and hoping you are still well! I also am on crizotinib just since December 1 2016. Feeling great and life is good.
I’m 59 yrs old and hoping to continue this for a long time!
Paula–I am just responding today to a number of comments—your’s included. I hope you are still feeling well and that life is great!
Thank you for sharing your experiences with others, and provide a positive outlook to inspire others. Would you be interested in sharing you story with others on the From Hope to Cures website as well? Send me an email if your are interested in discussing it more or connect with me at (http://www.fromhopetocures.org/imnotaverage).
Linnea, I am trying to read your blog from the beginning; it is taking a long time! I have a very close relative who has recently been diagnosed with Stage 4 Lung Cancer. Her husband is in denial and wants everything to be secret, so it is hard to approach her with appropriate questions. Is there a place on your blog with a list of questions to ask? I *think* she has non-small cell Stage 4 Lung Cancer. She has never smoked. I *think* from my reading on this and many other sites, that it is important to have the cancer identified as to type so that targeted therapy might be tried? It is hard to know what to say to her when I do talk with her (I have sent a letter and am planning to follow up with a phone call next week). I want to be supportive and helpful. I am reading as much as I can find so that I will be able to read between the lines of what may be told to me.
I am extremely worried about her receiving appropriate care since her husband’s MO is to be in denial. I can imagine that she is reeling from this diagnosis and it is so very hard to be your own researcher/advocate when you can’t even believe this is your life.
My relative is in Massachusetts like you and is close to the Boston medical community. Can you recommend a particular oncologist? I am wondering if your oncologist is taking new patients? My relative is retired and also on SS Disability, so I believe her health insurance is affected by that. She is near Leominster; are you aware of support groups or other places for her to get some support?
Thank you and I will check back for a reply.
Susan, I apologize for not responding. If indicated in a comment, I can always answer questions privately via email as well. If you would like to contact me again, please do so, and again, please forgive my very late response.
Very useful information.
Thanks for sharing
Pingback: Lung Cancer Associated Back Pain
Hi i just came across this page as being diagnosed with lung cancer today.
Im 41 havent smoked in years , live a healthy active life , run or cycle approx 3 times a week and today was told the cancer is incurable and i will have to go through chemotherapy. Its all a bit of a blur at the moment but any advice i can take from here will be a big help…look foward to any repsonses
Andy, I was digging through my comments and realized several had gone unanswered. It has been many months since you wrote, but I hope you are faring well.
That’s fantastic news, so happy for you.Ive been on the same drug now 7 months, just so worried about rejection, I’m married, my wife has ms, I’ve 2 girls 19 and 21.im 54.
Mike, apologies to you as well for never responding to this initial comment! Glad you were persistent.
I just stumbled upon your blog while researching cancer info. My father was just diagnosed with stage 4 lung cancer and I am devastated. Do you have any advice you can offer? Your are such an inspiration. I am so glad I was able to find something positive in the dark world of cancer.
Kelli, I am weeks (and months) behind on some of these comments so I apologize for the lack of response. I hope your dad is ok (and you too). It is a devastating diagnosis but one with variable outcomes. Please let me know how he is doing.
Your story has been an inspiration and gives me hope.
I was just diagnosed with stage 4 lung cancer and I was told by my oncologist that since I’m ALK positive , I can join the clinical trials. I signed up and now doing all the tests needed before I start the treatment. Since it’s random i don’t know which medicine will be given to me .
Can you give me some more information re; this clinical trials and side effect you experienced
Thank you and God Bless You,
Hi Cora—once you know which ALK inhibitor you will be in trial for (even if it is a blinded trial) I can give you a better indication of what to expect—if it’s one I’ve taken. You can also search through my blog as I have detailed side effects of each. Best of luck to you!
My 43 year old nephew was diagnosed w/stage 4 NSCLC and has the ALK gene. He is in clinical trial at Mass General. He has Avastin infusions along WITH Alectinib pills and his cancer isn’t showing up in scans! He was a nonsmoker!!! It has now been 3 years, started w/Xalkori until it failed b/c the cancer is in his brain and the Xalkori doesn’t pass the blood/brain barrier. We have hope.
Anne from NH
Anne, your nephew is getting his care at the best place possible (I am biased). That’s fabulous news about his scans—let’s hope this trial proves successful for him for as long as possible. Keep that hope!
I saw you speak today at HMS. Thank you again for coming to our group. As mentioned, I was so inspired by your talk and the strength that you have as someone who has fought so hard to live. You mentioned that you are an artist. Do you have an etsy page or an online store? I’d like to check out your art. Thanks again, Eddie Ross
Hi! I love your blog! I am currently beginning a project in which I compile the stories of female cancer patients and educate the students of my high school about the more personal aspects of cancer. This is for my Girl Scout Gold Award project. I’d really like to go into further detail over email. Could you email me and let me know if you would like to be a part of this? Thank you so much for having such an amazing and inspiring blog.
Hi Linnea- You are a wonderful writer please don’t ever stop.
If, in the near future you can send me a line or two I’d love to hear from you. I’ve been on Lorlatinib and I’m not a fan. xoxo Kimmy
Pingback: Field Trip to the Pathology Lab! (Part One of Two) – Every Breath I Take
My mom has recently been diagnosed with lung cancer (nsclc) and it came as a big shock. I came across your blog when researching about this and want to thank you for sharing your experience and journey.
Also, I read a lot about Dr Alice Shaw in your postings and was wondering if you would be able to share her email address? I’m praying she would give me a small measure of her time to advise me on my mom’s case as we are really far away in Malaysia.
Thank you again
Eve, I am really sorry about your mom but glad that you found my blog and Dr. Shaw. I will send you a private email.
Pingback: Blog for a Cure: Influential Lung Cancer Blogs | Oklahoma CyberKnife
Thank you and best of luck with both your blog and your cancer journey.
My name is Kathleen Engel and I am an editor at Health Monitor Network in Montvale, NJ. My company publishes guides on various health conditions that are distributed free to patients through doctors’ offices.
Right now I am working on the next issue of our guide to metastatic lung cancer and the woman I profiled for our cover story mentions YOU as giving her hope soon after her diagnosis. I would love to include in the issue 3 or 4 tips from you for our readers are anything you do or have done that have helped you in coping with stage IV lung cancer.
If you’ll send me an email address, I’d be happy to send you a PDF of our last issue before you decide whether you’d like to participate.
Senior Editor, Health Monitor Network
My wife has been on Lorlatinib 7 weeks now (Criz worked well but brain mets a problem)
My question is Lorlatinib usually associated with Stable disease or does it clear the chest?
Are there any figures?
Also what is median OS / PFS with it if no prev resistance?
I read your latest blog today. I too have alk+ lung cancer, alectinib. My hope is that you will read this blog: https://www.mycancerstory.rocks/single-post/2016/08/22/Shake-up-your-life-how-to-change-your-own-perspective
Another possibility is: https://careoncology.com/ . You are not out of options. I learned of Care Oncology in Jane McLeeland’s book, How to starve cancer.
May God Bless You With More Solutions!
Linnea, My nephew just passed his 5th
Year with ALK stage 4. He’s doing
Really well on third trial, no pain!
He feels 100%. Dr Sequist, Mass
General said he’ll live 10 years!!
Hope all is well with you.
I am a medical oncologist and I have been reading your blog for a long time. I have learned a lot and I recommend it often to some of my patients. You recently met one of them.
I would like to contact you. What is the best way to do it?
Greetings—I tried to message you on twitter but was blocked. I did follow you—you can message me there and provide your personal email and then I can give you mine. Thanks for reaching out!
I found your blog today and it was great to read about your journey. In January I was diagnosed with ALK positive stage IV NSCLC. I am 46 and a never smoker. It has been quite a journey just to get from where I was to a place where my oncologist can say I am a stable patient. It seems colossally unfair at times but I refuse to waste any energy or resources on being bitter or angry. I have a long road ahead of me and a lot of adventures to fit in. Thanks for sharing your journey. It is all about the pushing forward and just getting on with it.
Hi Tammie, best of luck to you. We can’t control the fact that we have lung cancer, but we can, to a large degree, control how we respond to it. It is colossally unfair but I feel it best to concentrate not on the why but the what–and having adventures is an excellent way to go about this (take it from me). xoxo
If nothing else cancer has taught me what exactly I do have control over and like you said it is how we react to the diagnosis and choose to move forward. I choose joy and determination. xo Tammie
Thank you so much for sharing your life with us. My husband was just diagnosed with sage 4 lung cancer and we are awaiting the testing to hopefully tell us that it’s a genetic mutation. He’s young – 47. We’ve been married for just under 3 years and have an amazing 7 month old daughter. We’ve got more life to live together and while we are under no dissolution that it will be easy, you give me hope that we can do it! Much love to you!
Stephanie, best of luck to you and your husband and yes, stay very hopeful. There are so many more treatment options now and more and more of us living longer and longer. Hug your husband and that baby of yours and know that even though this is not easy, you are not alone. The lung cancer community is behind you.
Pingback: Lung Cancer Awareness Month - Link Love - Every Breath I Take
Linnea – your blog is inspirational and so moving I’m having trouble seeing … I was just visiting with Rebecca Baldivia (now Chavez because she married Michael!) and your name came up – than I found your blog and saw you are connected with the inspirational and sublime Teresa Wiant. I’m sending you all the positive energy possible for your fourth clinical. Hugs from fort fun :). And I understand if you don’t remember me. It’s taking me a while to recall all the names and faces. Cindy Lang (now Caditz)
How special to hear from you–and other blasts from my past! And of course I remember. xoxo
Hi Linnea, I have been reading, watching, and listening to your story online on multiple sites. The latest news is amazing!!! Congratulations! Would you be interested in sharing your story more widely in a new podcast? If so, please send me a message at email@example.com. You can find more info on the pre-launch site: https://talkaboutcancerpodcast.com/ Be well, Serena
Just found a drawing of you from Lacoste! 19 years old?
Hi Linnea, It’s been a long time since I wrote to you. Hope you are good. We had connected over an interview in 2012.
In these years, CureTalks (www.curetalks.com)has started doing video shows. When a lung cancer talk came up, I thought of you.
The video format of our shows has a patient/advocate section to bring in the patient perspective. An invited patient/advocate gets to talk to the expert about the topic of discussion. This is a recording done on Zoom on video.
We are doing a talk on lung cancer mutations and treatment advances with UCSF doctors Dr. Trever Bivona and Dr. Kevan Shokat. This recording is scheduled for 5th October 6:30 pm eastern.
Invite you to be part of the show. If you find this interesting, please let me know. – Priya