About

My name is Linnea Duff, and I have advanced lung cancer.  Over a period of 6 and 1/2 years, I have had a variety of treatments.  On October 1st of 2008, I enrolled in the PF-02341066 trial (crizotinib, Xalkori).  I have had a remarkable response to the trial drug, which has stopped the formerly relentless march of my cancer. The fact that I continue to survive has given me the opportunity to be a voice for lung cancer, and I felt a blog would be an excellent medium with which to tell my story.

My purpose in recounting my experiences is two-fold:  to offer hope and to provide a window into the life of someone living with terminal lung cancer.  And I do mean living.  I have lung cancer, but it doesn’t have me.  Best,  Linnea

How Did I Get Here:

In two words: lung cancer. A little over six years ago, at the age of 45, I received a diagnosis of NSCLC, BAC. Prior to that moment, I thought that the only people who needed to worry about lung cancer were smokers, and I had never smoked. I also knew that survival statistics were worse than almost any other cancer: 84% of those diagnosed with lung cancer died within 5 years. The situation was not completely hopeless, as my cancer was limited to one lung. Surgery, the only accepted cure for lung cancer, was possible.

In late April of 2005 the lower lobe of my left lung was removed. This was followed 7 weeks later with adjuvant chemo (due to the size–5 cm–of my tumor). I received 4 infusions of cisplatin/ taxotere every three weeks. This was an unbelievably difficult experience, emotionally and physically, but I was going for the cure.

However my first post chemo scan in September showed an area of “concern”. The cure would elude me, although for the next two and a half years I retained a sliver of hope that the “schmutz” in my lungs was anything but cancer. Imagine yourself hoping that you have TB, or pulmonary fibrosis, or pneumonia. My cancer was the elephant in our room. However, we did our best to carry on as normal, and in the eyes of most people cancer was behind us.

By January of 2008, my cough returned and I became increasingly short of breath. And then in June of 2008, a biopsy confirmed that the cancer had metastasized and was now in both lungs. I now had stage IV, or terminal, lung cancer. In July, I began a course of Tarceva. It was known that I did not possess the EGFR mutation, which would have indicated that the Tarceva was more likely to be effective. However, there were really few viable treatment options, and Tarceva was one of the least noxious in terms of side effects. After two months a CT scan revealed that the Tarceva was having little effect. In the meantime, another genetic test had been performed on my tumor biopsy. My oncologist told me that it showed that I possessed an ALK mutation. This was significant, because among the courses of action he now proposed was a clinical trial that targeted this mutation. My other options were to continue with the Tarceva, return to a platinum based chemo (which was previously ineffective) or, most ominously, do nothing. The clinical trial was a phase I–which means that they were testing the drugs on humans for the first time and the goal was more to assess a safe dose than to determine clinical efficacy. This was truly uncharted territory, and certainly not risk free. Definitely the old between a rock and a hard place though–if my lung cancer continued its progression, death was certain. The clinical trial offered no guarantee that it would forestall my death, and in fact, might hasten it. It was a long shot, but it was a shot.

For me this was a no-brainer. I made the decision to go for the trial. In subsequent posts, I will go into greater detail about the particulars of this journey. Let me now cut to the chase and tell you that the clinical trial was successful beyond my wildest dreams. The side effects of the trial drug were negligible for me (a rarity in the treatment of lung cancer) and within days after starting treatment, I began to feel so much better. By the time of my first scan at seven weeks, I showed an almost complete response.

My cancer is not cured, but it is being managed. I am not only still alive, but I am alive and well. What follows is a short movie that was made by Pfizer, the sponsor of the PF-02341066  trial, to be shown in house to their research team. It is as good an illustration as any of the positive impact of this drug on my family.

Linnea_Sm

Linnea_Sm

This movie requires Adobe Flash for playback.

Why a blog? Because of the deadly toll of lung cancer, survivors who can stand up and talk about our experience are few. Survivors with stage IV lung cancer are rarer still. I have been given the gift of more time, and I would like to take this opportunity to educate and to offer insight into our experience. It is also my desire to instill hope in fellow sufferers of this awful disease. Do not give up hope. Progress has been slow, but it is coming. Genetic testing offers a world of possibilities for targeted therapy.

And now an update

Much has changed since I wrote these words. On August 26th, 2011, FDA approval was granted to PF-02341066, crizotinib, or, as it is now known, Xalkori. Hopefully stories such as mine will become much more commonplace.

After almost three years on Xalkori, I have taken my last dose (at least for now). My cancer has acquired an additional mutation which has knocked down the effectiveness of Xalkori, and I have been experiencing a slow but steady progression. On September 7th, 2011, I will have my lead in dose of LDK 378, a second generation ALK inhibitor from Novartis, yet another phase I of clinical trial.

I am hopeful that my ‘terminal’ cancer can continued to be managed; possibly for an extended period of time. I will take all of life I can get, and I think this story is far from over.

Best, Linnea

92 Responses to About

  1. Wow! Great site and writing! Put me on your update mailing list if you have one. Now get painting! <

  2. 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

  3. Linnea
    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
    K

    • 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

  4. Hi Linnea
    I think I should have said “some” in really small letters instead of “most”.
    I’m mailing you something this week
    k

  5. Hello Dear Friend,
    What a beautiful website!
    See you soon.
    lets keep getting better and better
    Life is good!
    your friend
    Jose

  6. Thank you Jose–good friend and MGH Cancer Center Employee of the Year winner! Linnea

  7. 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
    beingcancer@att.net

    • 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

  8. Hello 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

    • 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

  9. 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

  10. 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 https://sailCatharsis.com

  11. 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: mail@carosum.com

    Love caroline

  12. Heather Mitchell

    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

  13. 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!

  14. 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.

    Yours Truly,
    Michael Smith
    Clermont-Ferrand, France

  15. 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.

  16. Hi Linnea,

    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

  17. 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

  18. 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

  19. 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

    • 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

  20. 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 https://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 Rowe

    • 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

  21. Hi 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.

    Thank you!

    • 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

  22. 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

    • 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

  23. Oops! Meant to say I expect he will NOT need another transfusion by then!
    Leslie

  24. Hi Linnea

    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.
      Linnea

  25. 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

  26. Linnea,
    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

    • 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

  27. Harriet Grayson

    Hi 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

    • 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

  28. Hi 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

  29. 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

  30. 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 (@ https://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

  31. Hi:
    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.

      Linnea

  32. Linnea,
    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 Delay

    • 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

  33. 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

    • 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.

  34. Linnea,
    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.

      Linnea

  35. Linnea,

    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 McCloe
    https://thedayifoundout.com
    https://twitter.com/thedayifoundout

    • 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.

      Linnea

  36. Harriet Grayson

    Linnea,

    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?

    His sister,
    Harriet

    • 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

  37. 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 https://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.

      Linnea

  38. Hello Linnea,

    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 davdhaas@gmail.com?

    David

  39. 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.

      Linnea

  40. 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 https://lungevity.org/l_community/viewtopic.php?f=50&t=45641

  41. HI Linnea.
    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.
    thanks, Laurie

  42. Hi Linnea,

    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.

      Linnea

  43. Linnea,
    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

    • 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

  44. 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

  45. Caroline Collins

    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!!

  46. Caroline Collins

    Jemesii!
    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.
    Caroline

  47. 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

    • 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.

      Linnea

      PS: I heard a rumor, not confirmed, that LDK does pass the blood/brain barrier. It might be worth discussing with your oncologist.

  48. 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 :)
    Jessica

  49. 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.
    Gene

  50. Hi Gene -
    Thanks for the reply. You can check out my blog at https://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.

  51. Linnea,
    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.

  52. Hi Linnea,

    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,
    Danielle

  53. Hi Linnea,

    I am super impressed with your spirit and your blog.
    Take a look here …your blog features in the list…https://trialx.com/curetalk/2012/03/top-5-bloggers-of-lung-cancer/

  54. 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 :)

      Linnea

  55. Hello,
    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.

  56. Linnea,

    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!

  57. Pingback: Sending Some Love to Our Bodies | The Doctor Weighs In

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