Spoiler alert: For those of you who are currently enrolled in the PF-02341066 trial and/or considering enrolling, please do not be discouraged by today’s post. The trial has been nothing short of miraculous for me and many others. I have always known that it was, however, not a cure for me, but rather a much needed ‘vacation’ from my cancer.
Monday was the day of my appointments in Boston. As I got dressed that morning, I contemplated fixing my little V pin to my shirt, in celebration of five years, but somehow it just didn’t feel right.
It’s generally a solo trip, but David came with me this time. Due to the fact that it was Patriot’s Day, traffic was a breeze, and we got to the hospital with plenty of time to spare for a cup of coffee. Dr. Shaw was prompt, and as she entered the exam room, I could sense that it wasn’t going to be good news. Had it been a book that I was reading, I would have marked the page, shut it, and walked away. Maybe later.
Not a book though, but life as I’ve come to know it (quick fact: as someone who is fifty and was diagnosed with cancer five years ago, I have now spent 10% of my life battling lung cancer).
So, cut to the chase, it is now apparent that my cancer is developing resistance to the PF-02341066.
There is no longer a single area of concern in my upper left lobe, but several, including one in my right lung. In addition, the pleural effusion which had been stable for five years has gotten slightly larger. I’ve scanned in a copy of the report: for those who are curious, if you click on the image you can see it full size. Radiologist’s speak, and it’s a wordy one. Quite the opposite of the ideal report, which would be short and sweet and use words like ‘unremarkable’.
As I left Alice’s (Dr. Shaw’s) office, I felt like Cinderella at the ball when the clock struck midnight. I had been living in this fantasy which included a future and I was really getting used to it. It hit me really, really hard.
However, after approximately 36 hours of feeling sorry for myself, I rallied. This was due in no small part to the fact that Alice called not once, but twice with updates on potential avenues for treatment. Once again we are at the very edge of what is available. I was describing it to Peter as being similar to trying to cross a fast moving stream on a path of stones, and he more aptly envisioned the stones as the backs of turtles: they too are likely in motion.
So, I will stay on 1066 as long as I am able. Hopefully that will be for at least several more cycles. I would then potentially enroll in a trial for a HSP-90 inhibitor (HSP-90 is crucial to several proteins which stimulate growth in cancer cells). Alternately, I might return to a more traditional chemo such as Alimta. Some of the other options we had once talked about, including a wedge resection or radio ablation, are no longer viable, as my BAC appears to be multi-focal once again.
Perhaps most exciting, is a new ALK inhibitor by Ariad that was announced at the AACR meetings. It is specifically tailored for ALK mutations that have become resistant to PF-1066, and it is reported to be even more potent. However, it is preclinical: not even in phase I yet. One of those swimming turtles.
So, I’m shopping for just the right glass slippers again (or, back in line for another miracle). And in the meantime, I’ve got to stay positive, be strong, get as much benefit out of each treatment as possible, and just hope that medical science is one step ahead of me.
Wish us all well.
life and breath: outliving lung cancer 
I am about to start my first clinical trial in June for prostate cancer. Phase 2 trial (Pazopanib). Today is my 10 month Cancerversary and I am 42. I appreciate your website and will continue to follow your journey.
David, best of luck with the trial and I wish you many, many more of those cancerversaries (sounds like a dinosaur species)! Linnea
V for cancer coming back with Vengeance. Hard hit. I am double sorry. Hard to find prince with glass slippers to fit two sizes.
I was expecting problems for me but hopping was OK for you.
Not being damned happy since yesterday. I am for progress except progression of disease. On cancer I am Pro-life.
I got the expected bad CT scan results, in summary “There are multiple focal hazy ground glass modules within the lungs and these have shown a definite increase from January 2010. A couple of lymph 7mm perhaps marginally larger with a more definite increase from October and have to be considered worrisome”.
My Pro-choices: Forget needed right hip replacement now.
Timely good choice sold my sail boat last year, now lake Ontario is to low to launch.
Alimta maintenance not available free for me now, so is wait and see or “choose” free Tarceva pills without knowing if I have beneficial EGFR gene mutation.
I will be starting in 2 weeks, expecting lovely side effect rash like teenager’s acne.
Tarceva is used as 2nd and 3rd. last line treatments, life is a dream, freedom after?
Don’t cry for me Argentina, I was there for Eva Peron famous cancer.
A terrific presentation on timing and selection of treatment after the first line setting for advanced NSCLC.
http://cancergrace.org/lung/2010/04/19/qa-session-socinski-maint-rx/
Guillermo, I am sorry about your multi focal ground glass haziness as well. “Out, out, damned spot(s)!”
Sorry about your lost hip replacement too: I had an appointment two days ago for a consult regarding a (routine) colonoscopy. I’d never met this doctor before. He comes in, introduces himself, looks at my chart and sees that I have lung cancer. Asks why I’m getting a colonoscopy. Because I just turned fifty, I say. Yes, but you have advanced lung cancer, he responds.
I then explain to him that my oncologist thinks I’ll still be around for another couple years, so she’d like me to get the test. And I guess I’ll continue flossing my teeth, getting up in the morning, etc… Life does go on.
Anyway, I really wish we’d both had better news, but it’s already a matter of record that we’re tough, no? So hang in there, as will I, and don’t fret too much about revisiting adolescence.
Take good care my friend. Linnea
Linnea!
If anyone can find that glass slipper and another miracle, it will be you!
So May It Be!
You are in my thoughts and prayers!
Tracy, thank you, I have to remind myself that I am good at finding things (the treasure hunter in me), so perhaps glass slippers are no different. Linnea
Linnea,
I have followed your journey through your blog, and have silently been cheering for you. I am silent no more….please know that I am invisioning yet another miracle for you!
Sheila
Hey Sheila, hello and thank you for that vision. My best to you and your family. Linnea
Enjoying the sun in my backyard life goes on. A couple of morning doves returned from winter holidays behaving like love birds. Two years ago their nest in my roof gutter was destroyed by a rain storm with babies ready to fly. Last year they lost their eggs to an animal. They just build a new nest in a better site over my patio.
They are positive, strong and in love.
We are too.
Once you choose hope, anything is possible.
Recently I got an everlasting tooth implant, had a colonoscopy, proved to my wife that my head is not up there, and was recommended a hip replacement good for 20 years.
Don’t worry I don’t need it, I was never good at tango or soccer.
Cinderella your Peter Pan and Alice in Wonderland are Peter and Alice On Call ogist, she is with medical science five steps ahead of you (length of colonoscope). Just imagine!
Colonoscopy is easy “You put your left hand in, you take your left hand out…”
Don’t ask your doctor “Are we there yet?! Are we there yet? Are we there yet?”
Refrain from taking pictures for the New York times.
Guillermo, refrain, really? Why must I refrain from anything? PS: I’m no good at soccer or tango either: next lifetime. Linnea
Linnea – I am glad you took the 36 hours for yourself and sounds like you and the experts are back on track. Medical science will be there for you. I find your journey to this point to be interesting and enthusiastic, with a good dose of reality tucked in between. I am looking forward to hearing about your next “miracle” drug and hope that you can let the discouraging thoughts be replaced by your usual upbeat optimism and fierce determination. Remember, nobody ever said this fight would be easy. You just have to shift battlegrounds for the future. Linda
Linda, I am back in fighting mode (and just between you and me, occasional moments where my courage fails). We will get that t-shirt for you–take care my friend. Linnea
Oh Linnea-
I’m so sorry for your recent news. I will be sending good thoughts your way as you decide on your next course of treatment. Damn lung cancer!!!! It just sucks.
Emily, thank you! Damn lung cancer is right, but hey, congratulations on your one year and I think that’s great that you are at the NLCP advocacy summit. Look for a survivor named Stephanie–old inspire friend of mine–and after you post about your experience, I would love to link to it. Take good care! Linnea
Hey Linnea – I was expecting PF -02341066 to give you a lot more years than this! While Western medicine keeps finding new therapies to give us hope don’t forget the Eastern stuff. It has kept the balance in my life. I have had such awesome experiences with meditation, supplements and natural healers. I have decided to never associate myself with the “c” word again. I refuse to let it identify who I am. I putter around on my oxygen all the while picturing my lungs clear and healthy. Remember the Secret and Law of Attraction – I respect those disciplines. You are such a wonderful writer, your blogs are incredible and now I think you should start on your life story. I’m working on mine and it is so much fun that I want everyone to write their life story and I want to help people do that. The stories can be continued – one does not need to be old or knocking on deaths door before beginning their story. By the way, have you ever tried Alimta? I think that might be my next course of action also. It’s spring – a wonderful time of year, get out there and enjoy it! Love, Melanie
Melanie, although targeted therapies are known to have a limited shelf life, I too was hoping for more. I must say, that when my courage starts to flag, I picture you on a ski slope with your oxygen tank and I rally. Pretty amazing, you are. That is great that you are writing your story and I would love to see it; minus any final chapters 🙂 Alimta may well be next for me…Take good care and say hello to Colorado. Linnea
Dear Linnea
I dont like to read the progression you have, actually your situation looks like mine..a long period of great experience with a targeted drug which makes such a big bump when it looses its activity. It’s like being put under the water again after they gave you some time to breath.
On the other hand i love to read you warplan, searching for new therapies and i know there is a lot of work being done in the lung cancer field. We have to stay strong, stay here as long as possible to benefit from life and the new findings in the world of lung cancer.
Good luck and i think of you!
love caroline
Caroline, where oh where is our fairy godmother? And yes, we have parallel lives in many ways. So let’s make a plan to both just keep living, loving and fighting. I think of you always as well. Love, Linnea
When I had my colonoscopy the doctor couldn’t nip any tumors in my lungs and thought that there was nothing in my brain…
No good reasons to refrain. shock us with your rear side, best side?, pictures.
Can make your blog innovative, attractive, motivating, moving, inspiring people and raising cancer awareness.
We have a Breast of Canada calendar for breast cancer.
Friends can join you making a Colondar
“cento di questi giorni”… may you live to be one hundred years. My brother-in-law’s brother (a physician) was told to go home and get his affairs in order. Inoperable, w/mets to the lungs kidney cancer. He had repeated chemos (after consulting Stanford and UCLA) & is for whatever unknown reason, disease free… and I do believe some of it an unknown due to individual responses.
BUTnever give up HOPE dear Linnea! Keep searching for the possiblities….
Suzi, mucho gracias. Hope will be the last to go…Linnea
You are in our hearts and always in our thoughts. Keep walking quickly and stay one step ahead, one day at a time.
With our love
Pat and Will, howdy my friends. Keep walking is definitely my mantra…hope you are well. Love, Linnea
Dear Linnea,
I know you will successfullycross that “fast moving stream on a path of stones” with Alice to guide you. Science is exploding for us and putting more and more stones (or turtles) in the water. Thinking of you often.
Evie, it was so wonderful to meet you. The info I promised you is in the post, and yes, science, turtles, it’s all out there. I remain ever optimistic and ever hopeful. One of these days I may be in your neck of the woods (I’ve always wanted to go to the Mutter Museum), so perhaps we could meet up again. If not, maybe I’ll see you in the waiting room…your partner on this journey, Linnea
We must stay up….whether on the wings of fairy god mothers or on the backs of moving turtles. Thank you so much for your courage. It helps those of us coming up behind you. I just had my first dose of daily Neratinib and weekly targeted chemo of Temsirolimus on Monday with Alice Shaw for my HER2 mutation. I would most likely not even know about this if it was not for you having the courage to try your clinical trial. It has to be too early to say but my cough and breathing are amazingly better.
Have you been to Portsmouth for the Fairy House Garden Tour? It is so much fun. I am building a fairy house in my garden this year to invite the fairies in. I need all the help I can get!
http://www.fairyhouses.com/
I am on the 8th floor at MGH every Monday. Perhaps someday I’ll see you there. We all must hold each other up…on to the next step!
Thank you! and the very best to you on your next step.
Sheri, I’m a big fan of faeries and will check out that tour. Have you ever seen the Colleen Moore Fairy dollhouse at the Chicago Museum of Science and Industry? Amazing. My appointments are generally on Mondays as well, so yes, let’s meet up one of these days–I would really like that. Linnea
Hi, Linnea. I have been thinking about you since our time together at Easter. You are indeed a Cinderella – very beautiful, inside and out! I am inspired by your fight and cheering you on from the sideline.
Stephanie
Stephanie, it was a fun Easter, no? And thank you for your sweet comment and your support. Love, Linnea
Linnea
I am so sorry to hear this news. I love reading your posts and I always hope the best for you! You are such an inspiration to me, and so full of courage.
Linnea
Linnea, good to hear from you. Although I was disappointed, I remain optimistic. As the Queen said, “Stay calm, and carry on”. Linnea
Linnea,
We’re all in this together…..you’re in my thoughts and prayers and here’s to good kharma heading your way. The turtles may be in motion, but they are there, their backs strong…you just need non slippery shoes to cross (lol) and there are, I’m sure you are informed, more drugs & effective treatments being tested in clinical trials. It’s a matter of disease management, not cure. I am attending an LCA dinner this Thursday and I will be sure to mention your name (and mine) to everyone who will listen. TAke Care, Linnea (NY)
Linnea, thank you for your words of strength and solidarity. We Linneas have to stick together–I certainly feel as if you and I are sisters in this cause. Linnea
Hey Linnea,
I’m a reporter with Bloomberg News. I’m working on an article about PF-1066 and was wondering if you’d be willing to talk with me about your experience for the article. I’m focusing on the development of the drug and what this new class of drugs that targets a specific type of lung cancer could mean for patients. I’ve really enjoyed reading your blog and hope you are doing well. You may have already heard this, but data from the phase 2 trial on Pf-1066 is suppose to be release June 5 or 6 at the ASCO meeting in Chicago. If you’d be willing to talk to me about your experience, shoot me an email and we can set up a time to talk.
Best of Luck!
Shannon Pettypiece