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Deep Breaths & Quiet Sorrow
I finally took a few deep breaths on Friday, after weeks of nonstop medical appointments. Brain MRI and followup with Dr. Radiology; a random Thing with Dr. Primary Care; a chest CT and followup with Dr. Oncology; a followup with Dr. Primary Care. Brain and chest scans: stable. Excellent meetings with the cancer docs.
Dr. Radiology is amused that after two years of clear MRIs, I still insist on returning in six months. I smiled and said, “Well, lung cancer is such a sneaky thing….”
I didn’t mention that a dear friend in my group is battling recurrence, now with nearly 100 new brain lesions.(Because one tumor isn’t bad enough, why not add 99 more for fun?) My friend underwent her first whole brain radiation (WBR) session last week. This is a very big deal. The goal of WBR is to shrink the evil and offer some relief. I’m not pretending this is curative—let’s be real, her brain is a war zone. And, truth be told, the reality is a bit grim.
Sparing the hippocampus during WBR is now a best practice—because, you know, our memories and ability to learn should probably not be collateral damage in this whole “fighting cancer” thing. Radiation can cause cognitive side effects like memory loss, difficulty concentrating, and even changes in personality. Other fun gifts from WBR might include fatigue, hair loss, and some neurological issues. So, while it targets tumors, the treatment also aims to preserve basic brain function—like remembering where your keys are.
Her doctors say sparing my friend’s hippocampus isn’t an option.
My friend and I have different mutations. When I told Dr. Oncology about her, she asked if my friend knows hers. I told Dr. O yes, and that I’ve observed that people with that mutation tend to get hit hard, with brutal recoveries and even worse outcomes. She listened intently and nodded.
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Celebrations, Troubleshooting, A Little News
But let’s not leave Dr. Radiology so quickly, for she had really big news. Come November, she’s retiring early and moving to Europe. I gulped and had a nanosecond of panic— she is my favorite cancer doc, after all— but just a nanosecond. She’s struggled for more than a year with the enormous responsibilities of running a research and clinical practice; I’m glad she’s doing what’s best for her! I wish more of us did. (Not speaking to myself here, nope….) Besides, her colleague who will take over my care sounds great.
Back to Dr. Oncology, who was practically beaming when she walked into the exam room. She acts like a good scan is my doing rather than a lucky break of science. (Even though most reasonable people believe science is far from random….) I know she’s just celebrating; I feel happy. We’re sticking with osimertinib (obviously).
The most important outcome was talking through the disappointing events of the thyroid scan. (Quick review for those of you with precarious memories [not that I know anything about this]: months of hoarseness raised the question of cancer progression. Due diligence required another CT scan, but multiple communication lapses led to an extra radiation dose—equivalent to 8 months to 2 years of background exposure. (Bring on spontaneous glowing in the dark!) Dr. Oncology was basically horrified, and set about trying to understand where things broke down. I owned the communication I could have improved, she clarified her processes, and conversation turned to another miracle drug, amivantamab.
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A Horrible Miracle
Amivantamab (Ami) is a bispecific monoclonal antibody—a lab-made protein that mimics the body’s immune response. First approved in 2021 in an emergency FDA declaration, ami is the first treatment developed that targets exon 20 mutations. (I have that one).It was such a welcome relief to folks who needed it. In 2024, ami was approved for use with other drugs to treat mutations in exons 19 and 21. (I’ve got an exon 21 mutation too—jackpot!)
Ami is brutal, with nasty side effects. The first infusion takes six-plus hours—because having patients code in the infusion room is inconvenient. The thinking is, infuse it slowly, with lots of steroids and antihistamines and other stuff, and maybe the patient will make it through. Then comes the potential for tough side effects. I’m not even going to go there. You really gotta want to live to do this line of treatment.
And, it works.
Cycling, Couch Temptation, & Living Well
So we had a chat about it. Always interesting, because unless something better comes along, that’s my next line of treatment– if I progress.
Meanwhile, after confessing my woeful state of conditioning thanks to my mysterious autumnal hoarseness, she applauded my efforts to resume my cycling routine. She sees it as good for emotional and physical health. “But for you, it’s crucial for living well,” she added—maybe even slowing progression. (Ugh. It’s so much easier to lie on the couch…. But I’m working on it.)
Talking about living well, she was enthralled with tales of New Zealand. She remarked I’m doing cancer in exactly the right way– putting it in a corner and getting on with living. “So many people don’t,” she observed, a little sadly.
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The State of Other Affairs
Speaking of miracle drugs, research is what made these treatment advancements possible.
Last Friday, the 14th, the Senate approved the House’s budget resolution, slashing Congressionally Directed Medical Research Programs (CDMRP) funding by 57%—crippling research for diseases like lung cancer. That’s a $ 2.2 BILLION cut. The amount of research dollars lung cancer will lose this year is staggering.
Cancer patients just took a major hit.
If you’re feeling good about voting for Donald Trump or his Republican supporters in Congress, I’ll try not to take it personally. My life will take a hit because of what you did.
And your family and friends on Medicare, Medicaid, and Social Security? Just wait.
I implore you to seek information beyond Fox News about the impact of Trump’s reckless, devastating approach to slashing the federal budget.
DO SOMETHING!
Folks who didn’t, if lung cancer touches your life, Lungevity and Go2 have active advocacy groups. The Substack Chop Wood, Carry Water offers suggestions of simple daily actions you can take to advocate for issues that affect lives and livelihoods. And, the easiest way to advocate? Use 5 Calls, a tool that makes calling your representatives simple.
Onward!
That’s the update from my corner of Stage 4 lung cancer. Time to plan another quarter of full living.
Thanks for reading. Here’s hoping you get some good news today!
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