Revisiting the Amp(1q) Issue

You may recall my "Fly in the Ointment" post from Jan. 23, where I bemoaned that I had just discovered that I had acquired the cytogenetic abnormality known as amp(1q). As is my wont, I went online to research that, and what I found wasn't very encouraging.

I didn't share with you at the time what I found, but I'll share it now with my newly found perspective. Since I am on a clinical trial with Daratumumab (Dara), I researched whether Dara worked with amp(1q). I found a paper that showed adverse outcomes for amp(1q) patients on Dara. In fact, they described the outcomes as "dismal". Here is a link to the paper:

 Adverse outcomes for amp(1q) patients on Dara.

Here is the graph from that paper that scared the living bejesus out of me:

As you can see, of the 8 patients with amp(1q), 4 had relapsed within 3 months of treatment, 7 dropped out due to progressive disease, and 4 of them died during the study. Hmm. That sucks.  As you can imagine, I was a bit shaken by that information.

But since then, I have found reasons to be hopeful. First of all, the response I got from Dr. Richardson was pretty encouraging. While acknowledging that I am high risk, he feels that I'm on the right clinical trial for this. While it didn't erase all my concerns, he was upbeat and I respect his opinion.

The next thing I did was do a deep dive into the paper that Dr. Richardson presented on the MeziDd trial at the recent ASH conference. There are a total of 59 patients in this trial. What I found interesting is that 46% of these patients are in the high-risk category.

When I was researching the amp(1q) issue, I found that it is a commonly acquired high-risk genetic abnormality that affects about 16% of all relapsed myeloma patients. Statistically speaking, that means that about 4-5 patients in this trial should be afflicted with amp(1q). 

However, the results that Dr. Richardson presented showed that only 1 of the 59 patients in the trial had progressive disease! That's great news! Maybe amp(1q) doesn't always lead to such dismal outcomes after all. 

I've decided to chill out about this, keep my normal smiling face, stay optimistic, and hope for the best.

 

Cycle 3 Results

I finally got the last of the Cycle 3 test results today. The 24-hour urine analysis came back as "No monoclonal protein detected", which is the same result as last month. That's great news!

However, the serum protein electrophoresis revealed a Gamma M-Spike of 0.10 g/dl. That's also the same result as last cycle. I'm disappointed that it didn't go down, but at least it didn't go up. It is still well below the initial value of 0.29 g/dl before I started the clinical trial. This will be an important parameter to track as I continue this protocol. Overall, I'm responding quite well to this clinical trial.

As for my high Vitamin B12 issue, I now realize that I overreacted to that. You know how it goes when you tell someone "It hurts when I do this", and their response is, "Then don't do that anymore"? That sort of happened to me with the B12 thing. 

I said in my last post that I wasn't going to bother Dr. Richardson with this, but I did email the trial coordinator, Alice, about it. She asked if I was taking Vitamin B12 pills, and I acknowledged that I had been. She suggested that I stop taking them (duh!) and we can check the levels again in 3 months. 

The fact that she wasn't alarmed about my high B12 and didn't suggest doing anything about it shows that this whole issue is a big nothing burger! I need to chill out a little bit about some of these test results.  Oh, and I have some extra Vitamin B12 pills if anyone needs some.

I came across a video of Dr. Richardson discussing the results of this clinical trial after the ASH Symposium in December. It's somewhat technical, but if you are interested, here is the link:

Mezi Combo Therapy for Relapsed Myeloma

These results are pretty spectacular! Considering how well 90% of us patients are doing on the C3 arm of this trial, maybe there's another thing I should be more relaxed about, which is my amp(1q) cytogenetic glitch. Yes, it's a high risk, but I've always been high risk, and here I am 13 years later, still alive and kicking. So as long as I continue to respond well to this therapy, then it's all good!

Cycle 4 Day 1

I started my 4th cycle on the clinical trial yesterday at Dana Farber. Everything went well, as far as I could tell. I couldn't learn much from the early results of the blood tests, but most everything looked okay. so far.

I did get one very satisfying result. As you recall, my kappa light chain level had risen over the threshold for MM relapse, which got me into this clinical trial in the first place. I was relieved to see that it has not only continued to stay in the normal range but in fact has gone down. Here is the graph:

This result has given me some early hope that my remission might be back on track. I'm going to have to wait several more days before some of the other results come in. I'm most interested in the serum electrophoresis result, which won't be available until later next week. That's the one that went up last cycle. 

I'm hoping that that might have been due to the 3-week treatment delay caused by my Covid. When I spoke to the clinical trial team yesterday, they also thought that could be the reason. I'll just have to wait and see. 

One concern is that I have been becoming slightly anemic, even though I am taking iron pills daily. The trial team isn't too concerned, because this can be caused by the treatment itself. They did order some additional analysis of my blood draw, and one of the things that showed up is that my vitamin B12 level is very high! Here is a graph of previous results:

Now this isn't a parameter that is normally tracked.  The last time this was tested was in June 2022, and as you can see, it has been in the normal range for the last 12 years! So what is going on here? This could be something that has been going on for a while and may have nothing to do with my current treatment.

I did some online research to see what elevated B12 means for myeloma. The results I got were confusing. Elevated B12 is often associated with liver or kidney problems, diabetes (none of which I have), or certain forms of leukemia. Myeloma is usually associated with a low B12 count. Hmm.

Based on a bone marrow biopsy result back in 2016, Dr. Richardson thought I was at risk of developing Myelodysplastic Syndrome (MDS), which can develop into Acute Myeloid Leukemia (AML). However, nothing ever came of that at the time, although I am now taking folic acid and vitamin B1 as a preventative. 

Could it be that this has now raised its ugly head? Could it be that myeloma might be the least of my problems? Perish the thought! Obviously, I plan to discuss this during my meeting with the clinical trial team next month. I'm not going to bother Dr, Richardson with my frivolous concerns. I'm just bothering you with my frivolous concerns, which of course I expect to remain frivolous.

I'm glad I can share such an uplifting report. I'll have more news over the next week. Stay tuned.