As it turns out, not quite enough (of me)

The word from the lab looking for the PD-1 protein in my biopsy is that there weren’t enough cells (cancerous or otherwise) for a thorough analysis. If it is determined that enough tissue was ‘banked’ after the biopsy, a sample will be resubmitted. Dr. Shaw is not particularly optimistic.

So, the plan for the moment is to watch and wait. We will rescan in November and as long as I don’t become significantly more symptomatic, my situation will be reassessed at that time. In lieu of a PD-1 antibody, I could potentially return to one of the ALK inhibitors which I previously benefitted from:  LDK378 or Crizotinib—although as the LDK is still in trial, I’m not sure how that would work. Chemo remains an option but given the slew of side effects, I would say it is the least attractive choice. What I’m really hoping is that I can hold out until the next ALK inhibitor comes to trial (rumored to be end of this year or beginning of next)—the timing could be just right for me.

In the meantime, my plate is plenty full. I’m looking for a place to live as well as a means of support. I realize that statement implies much and answers little; I’ve got a lot to process and when the time seems right, I will discuss this new chapter in my life.

40 responses to “As it turns out, not quite enough (of me)

  1. Keep hanging in there, girlie!!! Sending much love.

  2. Dear Linnea
    I have been following you for 2 years now, since my husband was diagnosed with NSCLC stage IV at the age of 44. I always gain hope from you and important data on the new drugs. My husband after chemo has been on crizotinib for 1.5 years, although with brain tumors, some change in dosing improved his condition, taking criz. dose once a day instead of twice a day (article to be published soon).
    I hope that PD-1 will work out and that your personal storms will ease.

    • Shani, thanks for introducing your self and best of luck to your husband. Word has it that Pfizer’s upcoming ALK inhibitor will cross the blood brain barrier…..


  3. Sending many positive thoughts your way, Linnea! Wish I could give you a hug in person.

  4. Linnea,
    Praying that everything goes well for you and whatever lies ahead in your journey brings you peace hope and love♥

  5. Linnea,
    Just a reminder that I had stopped Xalkori for 3 months and had multiple growth. But upon restarting it, re-reduction was amazing. It might be worth a try again while waiting. Wishing you well in every aspect of your future.

    • Roni, I do recall that about your situation—but it is good to be reminded. At the moment I’m going to go as long as I can sans treatment, and see where that leaves me when it’s no longer possible to wait (oh waiting!)

      Best to you,

  6. Linnea, I haven’t commented much lately, but I read each post as soon as it arrives in my Inbox and I hang on every word. I am thinking of you and knowing that you will find ways to move through whatever you face. Your stamina and attitude are just two of many things that amaze and inspire me. It seems I can’t get enough of you, either! 🙂

  7. Prayers for good options and choices in all aspects of life. I’ll be home tomorrow if you want to call and chat. Hugs.

  8. I hope you find favorable answers on all counts in time.

    Best hopes,

    Craig in PA

  9. What Craig said! I too have read encouraging news on re-starting prior regimens. Awaiting your discussion.

  10. Linnea, my thoughts and prayers are with you. This blog has given me much support through Steve’s illness and passing. I do wish I could offer you that support as you face this latest round of challenges. I am a counselor by trade and inclination, only an email or phone call away, Dear Lady. Stand Strong. Hedy

    • Hedy, I knew you were strong and wise but I didn’t know you were also certified :)—thanks for the offer of support (it is always good to see you here), you are very generous to keep ‘coming’ even in the face of your own loss.


  11. Linnea, I have been following you for two years now since I became a part of the Caring Ambassador Lung cancer Program. I thank you for sharing your story. You have helped me understand this disease so that I can continue to raise awareness and hopefully create change. You are an amazing person. Thanks you so very much, Megan.

    • Thank you Megan, for ‘coming’ and for raising awareness. Greater understanding will hopefully lead to more compassion and increased funding for research—two things lung cancer is desperately in need of.


  12. Um, the last paragraph is scary… I’ll stay tuned. Sorry the harvest was not as bountiful as it needed to be. What crappy news… Ugh

  13. I love you LInnea ~ so very much ❤

  14. You are such a powerful and positive force, Linnea. You have touched so many with your energy, humility, honesty, and zest for life. Your selflessness is so apparent as you always put the needs of your loved ones before your own -despite the tremendous stress and anxiety that you have been under all these years. You deserve to be surrounded by love and loyalty. I hope you find all the support you need.

    • Aw Chrissy, thanks—those are all qualities I’m trying to talk myself into right now 🙂 I’m in the throes of a tough time, but it will get better.


  15. Linnea,
    I think I missed something somewhere…?


  16. Linnea,
    I’m new to your blog and have just finished reading it. A few slow days at work helped 🙂 Wow! I don’t even know what to say. As a Stage IV cancer patient myself (Carcinoid), I hear the words “you’re so brave, strong, positive” a lot but it’s what we do. We don’t really have a choice (unless it’s to stick our heads under the covers and stay there–which is sometimes tempting)! With that said, you truly are an amazing woman and thank you for sharing your life story with us! Please keep on blogging! I have learned so much about lung cancer. My mom had it years ago but did quite well. She died from metastatic liver tumors but we’re not sure if they were from her lunch cancer or from colon cancer…it was too advanced for a biopsy. I wish you the best always! Also, my sister has a house in St. George so I’m down there often (they just finished their pool)! I feel a little connected to you. It truly is a small world!

    Again thank you for sharing,


    • Sharon, thanks for introducing yourself, taking the time to read (a lot, it sounds like—gold star for you!!!) and best of luck on your own journey. And hey, now we are connected.


  17. Lung cancer, not lunch cancer! Sorry…

  18. Linnea, dear…I echo Megan’s comment, above. Her mother-in-law, Cindy Langhorne (now @ Caring Ambassadors, directing the Lung Cancer pPogram), and I worked at the patient advocacy org ALCASE, on behalf of people living with or loving someone with lung cancer, years ago, You’re so eloquent as you go along, open, caring, loving, rebalancing, adapting. And we who are with you are hoping, too that the discovery ahead will soon be in reach. You are living your way along through this authentically. I know whatever you need for your next moments will emerge. And, how about those wonderful photos–are any for sale? Warmly, Jan Healy

    • Jan, thank you too for your kinds comments and for your advocacy. And (funny–and really nice–that you should ask)—I am hoping to get some of my art out there in the near future starting with the photos. Stay tuned!


  19. how did the anti PD-1 thing work out? It dawned on me today that immunotherapy with ALK inhibitor might be a good combination..Hope the best is going on for you. My son is stage IV ALK pos since Nov 2011..had Xalkori Chemo Radiation (lots) LDK378 (until yesterday) and now we are looking at other trials. Let’s keep going while there is any chance of success!


    • Scott, I didn’t qualify for the PD-1 trial–there was not enough tissue and they really couldn’t isolate any PD-1 antibody. What are they thinking of for your son? Pfizer should have a new ALK inhibitor in trial any day now….


  20. Scott – I 2nd Linnea’s suggestion of looking into Pfizer’s new experimental drug PF-06463922. It’s the first “3rd generation” ALK inhibitor.
    The trial might start recruiting patients (I assume in Boston to start) by the end of the year if we’re lucky. The trial has the new rule of exclusing eole who have tried more than two prior ALK inhibitor drugs, so it might be good as the 3rd one tried. (Caveat: It might be good for a range of emerging mutant variants of ALK in the lab studies, but of course if resistant cancer is not still dependent on ALK then an inhibitor of just ALK wouldn’t be sufficient.)

    Best hopes,

    Craig in PA

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