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Friday, May 16, 2025

Another Tardy Update

I've had a few medical issues over the last couple of months.  I had an MRI of my cervical spine, two head-to-toe PET scans, a cardiac stress test, a dermatology visit, and an eye test. Life seems to be turning into a succession of medical appointments. 

In the meantime, I continued my monthly visits to Dana Farber on my clinical trial. The good news is that I am still in remission from the MM. My last visit was on May 9, and my free light chain ratio remains normal, with no detectable M-spike. That's all good, but some of the other results aren't as rosy. 

My cardiac stress test showed some plaque in my left ventricle, so my doctor wants me to schedule a fasting cholesterol test. I don't think that will be a problem, because I get my cholesterol tested every month at Dana Farber without fasting, and it's usually in the 170-180 range, which is normal. 

I had 5 biopsies for my dermatology visit, and all 5 were positive: 4 squamous cells and 1 basal cell carcinoma. They are on my scalp (2), chest, left arm, and right arm. When I pointed them out to my landlord, Garry, I made the sign of the cross to show him where they were, so he now calls me "Father Bill" 😊. I have scheduled 2 appointments to have them removed. 

My eye test showed some issues with my field vision, which could be indicative of glaucoma. I have scheduled a repeat test for next month.

The biggest issues are with the PET scans. The PET scan in March showed 2 problems: nodules in my left and right lungs, and some tracer uptake in my cervical spine, especially vertebra C4. My latest PET scan on May 9 showed mixed results. Fortunately, the nodules on my lungs have either completely or partially resolved, so thankfully, they don't seem to be an issue. I had scheduled a follow-up CT scan in June, which has now been canceled. Yay!

However, the nodules in my cervical spine have increased. The tracer drug I had injected was FDG, a type of glucose that shows cancer activity. These show increases in my C4 vertebra and a nearby lymph node, likely related to Multiple Myeloma.

I messaged Dr. Richardson for his take on these results. His nurse got back to me, suggesting that I schedule an appointment with a radiation specialist. It looks like I might be in for some radiation treatments for this condition. Rats! Fortunately, I don't have any pain or restricted movement in my neck, so that's a positive.

I'm confused. My clinical trial is going so great! I have no M-spike, and my free light chains are still in the normal range. How can this be? After a little research, I discovered that I might have extramedullary disease (EMD), where only light chains are secreted, even without a detectable M-spike in the blood serum. Shit! So these light chains may only be detectable in the urine (which I haven't provided for the last couple of months). I will provide a 24-hour urine sample at my next visit.  I need to have a conversation with Paul about this. 

I don't think I'm about to expire from high cholesterol, skin cancer, glaucoma, or MM any time soon, so I expect to be around to give an update on all these findings. 😀

4 comments:

  1. Oh my, that’s a lot of “stuff” going on ; and amazingly you now sound like one of the “docs”! For you know so much of all of this medical terminology, it amazes me ; but with no surprise after everything you e gone through ; you just keep up the faith “Father Bill” 😅; you keep on trucking… hugs 🤗

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    1. Thanks for the kind words!

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  2. Your updates are the best, Bill. And I agree with the other comment- you sound like one of the docs! Your documented journey is so helpful to many. Please keep us posted on next steps and results, and keep up that great attitude which comes through in every post.

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    1. Thanks for your comments. I promise to update this blog as I undergo treatment and get some results.

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