Stories of Lung Cancer

We tell ourselves stories in order to live.     ~Joan Didion

Dates on the Calendar

Last night I was trying to get the different cytology-pathology reports sorted out. Of course, that led to reading the reports again. I’d sent R. the links to the reports and it turns out she was reading them, too, so we had a reading-texting-Googling session. We alternated between trying to interpret a lot of stuff about genes, reading scientific study abstracts, marveling at the musicality of some of the acronyms the medical folks toss around, and pondering whether the trial was the right thing.

I do indeed have a genetic mutation, two in fact, each of which “results in cellular proliferation, migration, and differentiation.” These mutations “are found in many cancer types such as lung, brain, colorectal and head and neck cancer.” There are targeted treatments for these, but they are new and/or experimental.

T Helper Cell

Some experiments involve simultaneously administering the immunologic treatment and the targeted treatment. Sadly, more than a third of patients develop horrendous side effects, and some have liver damage. One debate in the medical research circles is whether the risks of the simultaneous treatment are worth the benefits. The juries, and there are many of them worldwide, are still out. Which is good news, because that means more treatments are being discovered as we speak.

R. read, however, that the effect of the immunologic Durvalumab on the particular mutations may not necessarily be that helpful. So even though my TD-L1 number is reasonable (40%), do the mutations cancel out the good of a reinvigorated T-Cell response? Oooh, good question, for which AP Bio did not equip us.

Then there’s the question of the sequence and timing of the trial steps and how these overlay other factors, i.e., tumor and lymph node size, a thyroid gland that needs to be removed after the lung cancer is beaten off, this weird hoarseness that has developed in the last two weeks. (Who knew hoarseness could be associated with lung cancer? And if mine is, why has it only just appeared?) 

Timing: the first days of the trial would involve gathering data, including redoing PET, MRI, diagnostic CT, blood, etc. etc. That could take up to 28 days. Then, the first cycle of Durvalumab would be administered. 28 days after that, chemorads would start.

That’s a lot of days before direct action on the Bad Boys.

By this point, it was past my bedtime, I had questions for the research nurse and Dr. Oncology and I was feeling uneasy about participating in the study.

It was this morning while I was trying to get my answers lined up that I realized I was starting to feel unmoored. If I’ve learned anything in life it’s that even if something is a great idea, if I can’t cope with it, then it’s a bad idea. Sitting at my desk with tears in my eyes? Not good. So I confirmed the research nurse’s hunch that the timing seemed bad and I opted out of the study.

Then I spent an hour on my spin bike, got my second dose of Covid vaccine, and headed to Costco to stock up on frozen fruit for my new life with smoothies (burned esophagus = swallowing). On the way, Dr. Oncology’s scheduler called.

Chemo starts Monday, April 5, with an 8:20 check-in. Apparently I will be there until my radiation time, 3:30 p.m. They have heated blankets. It was suggested that I bring lunch, a book….

Radiation starts Thursday April 1, at about noon.

A different life is about to begin.

DNA image by gagnonm1993 from Pixabay

T Helper Cell image by allinonemovie from Pixabay

Blossom image by Kurt Bouda from Pixabay

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Oh, my dear, thank you so much. It means so much to know you are out there…. Love to you,

Karen- I am saying a prayer for you every day as part of my morning ritual. Just want you to know. I sooooo appreciate you writing to keep us updated. Thanks again for including me. I am so fortunate to be your friend. We are all so lucky to be able to give back to you.
Sending love, hugs and peace to you, Mark, Ruth and your mom.

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