Silver Lining

I want to apologize for my last post. It was a bit negative, so I thought I would balance that with something a little more cheerful. 

I still haven't been able yet to get ahold of Dr. Richarson's ASH paper about my MeziDaradex clinical trial. His abstract talked about the Overall Response Rate (ORR). ORR is defined as the proportion of patients who have a partial or complete response to therapy. His presentation with updated results showed that the ORR has been over 80% on this trial. There was also a teaser in one of his YouTube videos that one of the cohorts in the trial achieved an ORR of 89%. 

There are three cohorts in the MeziDaradex clinical trial, B1, B2, and B3. When Dr. Richardson offered me the opportunity to participate, he suggested I enroll in Cohort B3, which I did.

After the ASH convention last month, the maker of Mezigdomide, Bristol Myers Squibb, issued a press release on Dec. 11. Their press release spilled the beans! It revealed that results at ASH showed that Mezigdomide combined with  Daratumumab and dexamethasone in previously treated patients achieved a response regardless of dose and schedule, with ORR observed in 82.6% of patients in Cohort B1, 62.1% of patients in Cohort B2, and 88.9% of patients in Cohort B3.

Yahoo, that's me! Color me B3! In Dr. Richardson I trust!

Now I don't want to get ahead of myself here. The amp(1q) is still a big issue. After finding out about that, I got a bit down, but you all know me as an optimistic person. I like to look on the bright side of things. Finding this press conference today brightened my mood considerably. 

I'm not "out of the woods" yet, but I'm ready for the fight. Bring it on!

I don't want to be overly pedantic (or do I?), but the etymological origin of the idiom "'out of the woods" can be found. Abigail Adams used it in a November 1800 letter found in the Papers of Benjamin Franklin. Just sayin!  

Fly in the Ointment

So far, I've been very happy with my progress on this clinical trial. However, as one might say, there is a "fly in the ointment".

Now that's a phrase I've used unthinkingly for most of my life, but what does it mean, really? On the surface of it, it doesn't seem to make much sense, right? Where did this phrase come from? The answer appears to be Biblical. According to Wikipedia, the likely source is Ecclesiastes 10:1: "Dead flies cause the ointment of the apothecary to send forth a stinking savour." Now I get it! I'm glad that's settled. But I digress.

I got my Cycle 2 blood serum and urine protein electrophoresis results today. The urine results still show no m-spike, which is great! However, the serum results got a little worse from the last cycle. The previous result showed a "faint M-spike that is not apparent on the electropherogram and, therefore, cannot be quantitated". The latest result, however, shows an M-spike of 0.1 g/dL. That's still lower than the 0.29 g/dL that I had back in October, but it's going in the wrong direction! 

It could be that the 20-day hiatus from Dana Farber that I was forced to take due to Covid might have slowed down or reversed the progress of the treatment. I don't know. I hope that's the case and that this is just a temporary glitch.

But that's not the only problem! I just recently noticed from my October 13 bone marrow biopsy results that in addition to my known t(4;14) and hypodiploidy cytogenetic abnormalities, I also now have chromosome 1q amplification, or amp(1q).  This abnormality must have been acquired at some point, as it wasn’t noted in my previous bone marrow biopsies. It's not unusual for genetic abnormalities of MM patients to evolve over time.

On researching this, I quickly discovered that amp(1q) is associated with severely adverse outcomes for MM. Oops! Now that's a bummer. Nothing that I have read about it yet is very encouraging. None of the MM drugs in clinical use today seem to have any beneficial effect on amp(1q).

However, these projections seem to fly in the face of the good results I have been getting so far in my clinical trial. I was a bit bewildered, so I decided to email Dr. Richardson to get his take on this.

As is his wont, Paul responded promptly. Here is his assessment: "I would suggest this genetic profile in your disease validates the treatment we have recommended as this does suggest higher risk disease, but I am very hopeful we are going in the right direction with your treatment, which is designed to deal with just such additional “risk”."

Hmmm. That's not exactly a ringing endorsement, but I guess that's the best I can hope for. Maybe my long string of extraordinary good luck with MM is about to be tested. I have to say that these recent revelations have been like a "bolt from the blue".

Now that's another phrase I've often used without exactly understanding its meaning. I thought it might refer to a bolt of lightning. However, as it turns out, an ordinary bow shoots an arrow, but a crossbow shoots a projectile called a bolt. Since a crossbow has a lot longer range than a bow, the bolt can seem to come out of nowhere. Okay, that settles that. But then again, I digress...

Cycle 3 Day 1

I was at Dana Farber today for the beginning of my 3rd cycle on the MeziDaradex clinical trial. It was a long day. I got there at 1:00 and didn't get out until after 6:30! They were short-staffed and everything was backed up. I brought in a 24-hour urine sample, and the analysis of that along with my blood serum protein electrophoresis results will give another data point on my progress to date. I expect those results over the next 3-4 days. I hope the time I lost because of Covid doesn't mess things up. Fingers crossed!

A weird thing happened when I was getting my subcutaneous Dara injection. The insertion line filled with blood, meaning Emily had hit a vein. She said that happens very rarely, but she had to do it over. I suggested that she find a different spot in my stomach! The next one worked much better.

Everyone is still anxiously waiting to get a copy of the paper Dr. Richardson gave at the recent ASH conference on this clinical trial. I will share it with you if and when I can get access to it. Alice Tattersall told me that his presentation was very well received by the Myeloma community. 

I also found out from the nurses that at a recent meeting between Dr. Richardson's team and the trial sponsor, Bristol-Myers Squibb (developer of Mezigdomide), I was a topic of conversation because of the outstanding response I had to my first cycle of the clinical trial! Wow! Needless to say, that made me feel pretty good. 

I know I may sound like a broken record, but I have been so fortunate over the years with my MM between Dana Farber, Dr. Richardson, and the amazing clinical trials I have been lucky enough to get enrolled in. I'm just so grateful! 

From now on, I only go into Dana Farber every other week for the next four 28-day cycles. After that, it will be once a month. Yay! My next appointment is scheduled for February 5 to get me back on a Monday schedule cycle. I was supposed to get a Zometa infusion today, but I rescheduled that for February 5. It's not related to the clinical trial, so it's no big deal.

I'll update this blog after I get the results from today's blood and urine samples. In the meantime, stay warm!