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. 😀

Long Overdue Update

It has been several months since I updated this blog. For that, I apologise. A few things have happened in the meantime, which I will try to summarize. 

In January, I came down with a respiratory infection that had me bedridden for a couple of days. It continued to linger, and one day, the left lymph node in my neck swelled up. I ignored it until it subsided a few days later, but then my right lymph node swelled up. 

Then I decided to go to the doctor. He suggested I get an ultrasound, but as it was a Friday, I waited until Monday, but by then the swelling had gone down and I didn't schedule the ultrasound. However, later that week, my left node swelled up again, so I decided to get the ultrasound after all. 

The ultrasound on Feb. 3 showed some activity in my neck that was inconclusive, so they scheduled a CT scan for February 11. The results of that were a little scary. The nodules in my neck were possible metastases of a cancer from elsewhere. Also, there was a small (4mm) nodule in my right lung which wasn't there in a 2023 CT scan. Gulp! Naturally, I became focused on the possibility of lung cancer. I decided to suspend my MM chemo for the rest of that cycle.  In the meantime, I got a bone marrow biopsy on February. 5.

I had my Dana Farber appointment on February. 14, where I shared my CT result. They approved restarting my MM therapy that day. Afterward, Dr. Richardson scheduled an appointment with Dr. Steimer, a thoracic cancer surgeon there. He also scheduled me for a cervical spine MRI on Feb. 25 and a full-body PET scan on Feb. 27. 

The MRI result was encouraging. The lesions on my cervical spine are most likely related to the myeloma, not metastases, thank goodness! Also, another soft tissue neck lesion is probably vascular, whatever that means, but it's not bad. 

The PET scan was even better. My lymph nodes are fine, and the new small lung lesion is probably just an infection. There is possible infection or skin cancer on my left scalp, which I am aware of, and there is no sign of any other cancer elsewhere in my body! I have an appointment with my dermatologist in April, so I will take care of the scalp issue.

I met with Dr. Steimer on February. 28. She affirmed that these results look good, but she wants me to come back for another CT scan in about 3 months, just to make sure that the new lung module isn't growing.

Interestingly, this whole battery of tests started with my lymph node problems, but in the end, they had nothing to do with it! 

In the meantime, my bone marrow biopsy results have all come back. I am still in full remission, and even better, the test for Minimum Residual Disease (MRD) was encouraging. While it found possible myeloma cells, they were below the Level of Detection (LOD) of the test, which is one part in a million! The blood tests are only good to one part in a thousand.

It seemed like an oxymoron that they might have detected myeloma cells, but were below the LOD of the test. What? I called the Dana Farber medical team for an explanation, and they felt that this test actually shows that I am MRD negative and that the evaluators were just covering their asses, which is great news! Such a result is very positive for predicting long-lasting remission from MM. 

After all of this, it appears that I am in pretty good health for my age (knock on wood). Trust me, reading these lab reports is pretty discouraging when you find out all the parts of your body that are deteriorating. But fortunately, I feel good, I'm not in any pain, and I'm still mobile, which is the most important thing. I have to say that I continue to be blessed. I have been very lucky, and I am grateful for every day!