Piece of me

Life can’t just be fun and games, and on Friday I had a needle core biopsy. Yes, my last CT scan showed some progression. Not a lot—characterized in the radiology report as “slight interval increase” but also not a little—“consolidation at the periphery of the remaining left lung has increased in size compared with 6/17/13, now measuring 4 × 1.9 cm in greatest axial dimension compared with 3 × 1.8 cm on 6/17/13.

It was a great summer and my break from treatment was absolutely worth it. However, my lungs are getting a little noisy at night again and I’ve noticed more shortness of breath as well as a reduction in my level of energy. So…Dr. Shaw and I concluded that it was the right time to start looking into my next option. That may well be an anti-PD-1 human monoclonal antibody;  an experimental treatment which falls under the umbrella of immunotherapy. An explanation of PD-1 quoted from InforMEDical:  “The programmed death receptor 1 (PD1) and its ligands make up another physiologic immune checkpoint that is co-opted by some tumors leading to immune tolerance. Programmed death ligand 1 (PDL1) is expressed on several tumors, and can be induced by inflammation in the tumor microenvironment. On binding to PD1 on activated T cells, an inhibitory message is delivered to the T cell, resulting in T cell inactivation. Monoclonal antibodies to PD1 and PDL1 can block PD1 messaging, and allow T cells to proceed with a co-ordinated immune attack.

Essentially, the hope is to kick-start or wake up a specific pathway of my own immune system. For a very accessible overview of PD-1/PDL-1, check out my friend Janet Daily-Freeman’s post on this subject. Janet is smart, funny, kind and a whiz at explaining and I highly recommend that you take a look at her wonderful blog; Gray Connections.

The experimental therapy which I am hoping to get a shot at is MK-3475  or lambrolizumab; this agent has shown impressive results in patients with advanced melanoma. However, before I can be admitted to the trial, a fresh biopsy was required. If PD-1 protein is isolated in my tumor sample, I’m a potential candidate.

So on Friday I had yet another needle core biopsy. The location of the greatest consolidation of my cancer remains problematic; against the pleura and adjacent to my heart. Last time the radiologist went in right through my left breast (!)—this time, the approach was from the side.

Prep involved fasting and although I was initially scheduled for early in the morning, my procedure was shoved back by several hours. The biopsy itself is a curious thing; you are given ‘twilight’ or light anesthesia so you remain awake but in a rather somnolent state (not prone to arguing). After my body was arranged on the table, I was strapped in and instructed to neither move, cough nor speak. I did none of the above and I’m pretty sure that when I was taken back to recovery, I was introduced as the best lung biopsy patient ever (I really though I heard that—may well have been a sweet dream induced by twilight!).

Then the hard part started, as you must lie on your stomach for three hours post-biopsy without moving or talking. Although it was a full house when I was wheeled into recovery, I was the last to leave. At one point two nurses started talking about cider donuts…it was torture. However, not being able to speak or even move a finger, I was unable to express my displeasure.

Room with a view

Room with a view

At hour one and three a portable x-ray machine was rolled in and the condition of my lungs checked. I developed a small pneumothorax and so earned myself a suite in the Swedish Hotel for the night—I mean Lunder Building. Not a bad place for a sleep-over.

Although the main objective of the biopsy was to attain tissue for the clinical trial, we had hoped that sufficient material would be recovered to start a cell line. Dr. Shaw called this morning with the news that once again, there were only enough cells to check for PD-1. Oh well–no cell line or mouse model this time. We also discussed a story on Yahoo News pertaining to Roche’s anti PD-1 antibody; specifically the fact that when the numbers were parsed, smokers showed a greater over-all response (26%) than non-smokers (10%). Although personally discouraging, in the bigger picture, it is great news. Smokers tend to have a more complicated mutation profile at diagnosis, and therefore have not responded as well as non-smokers to the inhibitors that target a specific mutation, and which have monopolized breakthrough status in the treatment of lung cancer in recent years.

I see Dr. Shaw in a week and at that time we should know whether or not my biopsy was positive for the PD-1 protein. If it is, I will likely go on trial and cross my fingers that I’m one of the 10% who respond. And if no PD-1 protein is found in my sample, well, that’s another discussion.

29 responses to “Piece of me

  1. My fingers are crossed for you for all circumstances to work in your favour.

  2. Catherine expressed my thought exactly: I’ve got my fingers crossed for good luck for you.

    Best hopes,

    Craig in PA

  3. It looks like I will be following in your path. I live in FL, but have been traveling to Boston several times a month for a clinical trial, which I discovered last week, stopped working. Dr. Sequist believes that I will be a good candidate for the PDL1 study at Mass General. I am terrified of having another biopsy as the last one landed me in the Lundy building for 4 days. I have an appt. with Moffitt in Tampa to see if they are offering the same study. If not, I will probably be booking a flight to Boston for my next biopsy.
    I wish you all the hope and health and success in your journey. Know that you are not alone. I will keep you in my prayers.
    Take care

  4. I wish you luck and stay strong Linnea, i will pray for you.

  5. Keeping you in my prayers♥

  6. Don’t envy you the core biopsy, but glad it was able to get a sample for the trial. Hope you get into the PD-1 trial and it works wonders for you!

    • Janet—I’ll know by Tuesday. If I’m in, that is. Then the other kind of waiting begins (for response!).


  7. And thank you for the kind words about my blog. We do what we can to fight this beast.

  8. Fingers crossed too!

  9. Sharon Wierwille

    Thinking of you and hoping!

  10. Looks like you had a great ‘break’ this summer. So much happiness (re)found. Sorry haven’t been in touch. But always thinking of you

  11. Praying for positive results in everything! Let’s keep that summer fun going another season. Stand Strong. Hedy

  12. Oh, Linnea, you had to go through another one… Reading it, I had a flashback of my own traumatic experience with a needle core biopsy and it made me shudder. Glad to know yours wasn’t too bad this time except the frustrating post-procedure resting part. I’m praying for good results!

    • Yeah Yuki—don’t think about that! I haven’t had much of a hard time with the biopsies—a couple of pneumothoraxes—but really the worst part is just laying on my stomach and not moving. I repeated my mantra many times. And hey, thanks for the good wishes.


  13. Dr. Heist? Did he get away with a piece of your tumor?!

    Feel better soon, sweetie xo

  14. Hi’
    I’m new here…. I found lots of helpful information for my mother on your blog…
    We are looking for a second opinion and I wanted to know the name of your oncologist.
    Thank-you and hope this new treatment works for you.

  15. Thank-you so much for your fast reply. Do you by any chance have her E-mail?
    Thanks again

  16. Lia,

    Dr. Shaw’s contact info is on MGH’s web site under the “Contact” tab:

    She’s my oncologist, too, with superdoc expertise in lung cancer that is driven by rare ALK, ROS1, or RET mutations. (My cancer is ROS1+.) The odds of finding anything useful like those depends on type (e.g., NSCLC, esp. adenocarcinoma) and never-smoker status, and such mutations aren’t relevant until stage 4 since inhibitor drugs for those do not offer cure whereas local treatments might for early stage lung cancer. If you are near Boston she’d be a great choice; if not, you might start with more local testing for more common useful driving mutations and once you know what you’re dealing with or have ruled out then seek an expert for a situation like yours. (I started at UPenn before going to Alice for extra testing of new experimental things.) FWIW, you’ll also find a large supportive community of lung cancer patients on inspire.com’s Lung Cancer Survivor web site to learn from.

    Best hopes,

    Craig in PA

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