Sigh of relief

I had a zoom meeting with Dr. Jessica Lin and Dr. Alice Shaw today to go over my scans. And…despite the fact that I am feeling more symptomatic, everything looks relatively unchanged from the previous scan six weeks ago.

However, Alice assured me, I know my own body and she takes my assessment seriously. Bottom line, this likely represents slow progression—too subtle for scans that are spaced six weeks apart.

The plan is to wait two weeks for another infusion of DS1062-a. Ideally I would have at least one more infusion after that, but once again after four or five weeks rather than three in the interest of side effect management.

Then we would reassess. Of course, I always want to know what my future options are. I am happy to report that there are two, a virtual wealth. First, a MEK inhibitor paired with lorlatinib, a trial which is currently enrolling. However, Alice was even more enthusiastic about a trial which is at least three months away from the clinic; a SHP2 inhibitor and lorlatinib. Because I have three known secondary mutations, (G1202R, S1206F and G1269A) Alice feels my cancer is still primarily driven by ALK–the secondary mutations representing an effort to get around ALK inhibition. Hopefully a combo will cover enough bases.

I would characterize this as good news. I already knew my cancer was progressing but I am reassured that the progression is slow. And I like the sound of two options vs one. Better yet, should I have to begin with the MEK inhibitor/lorlatinib, it will not preclude my enrollment in the SHP2 trial.

So there you go. Business as usual. I still have cancer. But I also have options.


10 responses to “Sigh of relief

  1. So glad to hear that options are in the discussion. Btw I love your paintings? Do you sell them on any site?

  2. My 54 year old brother lives in Andover ma and is battling stage 4 lung cancer. I read your posts for inspiration and hope. When you talked about going up your studio stairs to strengthen your lungs , my brother is running 1 mile a day for the same reason. I saw your post about being in Andover and having a studio in Lawrence. I am originally from Lawrence and my grandfather used to work in the old mills in Lawrence.
    We all hold our breath every two months when my brother scan approach and we wait the results.
    I admire you and him and your bravery. Your honesty and raw emotions is so helpful to me. I just want to thank you. Once we get out of this Covid mess and I am in Andover , Ma visiting my brother and parents (I live in Pennsylvania with husband and kids) I would love to drop you off flowers just to thank you
    for giving so many people the strength to go on.
    Thank you Kim

  3. Good news! You keep being on the forefront.

  4. Good news on the skin great news on the future options. So happy for you

  5. Thank you for update I have been thinking of you. Good news and yes two options better than one if this is indeed progression..💖

  6. I consider this good news as well Linnea!!❤️

  7. Good go know your options. The glass is half full. I don’t know how to add a smiley face. ooooo

  8. Fantastic news Linnea!!! Another miracle in the near future!!!

    Sent from my iPhone


  9. Options are gold especially more than 1! Not Today cancer,

  10. “So there you go. Business as usual. I still have cancer. But I also have options.”
    I think you summed up the hope of every cancer patient on the planet. It’s certainly a goal of mine for as long as I can make it happen.

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