Back in the Saddle Again!

I didn't update my blog last week when I got sent home for low white blood cell counts. I didn't want to scare anybody. 

I went back to DFCI yesterday hoping to resume my clinical trial treatment. Fortunately, my low white blood cell and neutrophil counts had completely recovered to their normal values. The Neupogen shot I got last Monday probably helped. I'm also feeling better from my cold, which probably also helped. So I'm back on the trial with only a one-week delay. Yes! 

While in the waiting room after my blood draw, I picked up the local weekly DFCI news magazine, "Inside the Institute". One of the articles was about a recent study that Dr. Richardson published in the New England Journal of Medicine about the effectiveness of my trial drug, Mezigdomide. The article published clinical trial results of combining Mezi with dexamethasone alone, which showed a 40-50% response rate, which is quite good. Of course, that trial preceded the one that I am now on including Daratumumab, which should provide even better results. 

I met with Alice, the trial coordinator. She told me that they are all excited about the paper on this trial that Dr. Richardson will be presenting at the American Society of Hematologists (ASH) convention in December. The results are starting to leak out, showing about an 80% response rate, and patients and oncologists from all over the world are now clamoring to get in on this trial. Unfortunately for them, the trial is closed to new patients as of now. Maybe they might open it up again...I don't know. 

Alice said that Dr. Richardson has been asked to present his paper at one of the major sessions of the conference. This is all very encouraging. I hope to be able to get a video, audio, or a transcript of his presentation. 

I hope everyone has a Happy Thanksgiving! I'll update this blog when I get more news.

Early Bird

In my last post, I said I'd let you know what the high-dose 40mg of dexamethasone would do to me. I then went to bed and slept like a baby. Oh well, who's to figure?

I worked out a schedule for taking the Mezigdomide pills. I kept them chilled in my bathroom overnight. When I got up to pee at my usual time around 5:30 or so, I took the pills and went back to bed. When I got up later, I was able to have normal coffee and breakfast. It worked out well. This week is my week off, so I don't have to worry about it.

Today marked Cycle 1 Day 8 of my clinical trial at Dana Farber. I had spent the weekend at the farm with Jeff, Christine, and Khoren closing it up for the season. I hitched a ride to upstate New York with them and planned to spend last night in Boston with Holly and Ryan. However, they weren't feeling well, so I drove my car home instead from Lowell.

My first appointment was at 6:50 a.m., so I set my Alexa alarm for 5:30. I awoke with a start and saw the clock said 5:45!  I didn't hear Alexa go off. I leaped out of bed, hurriedly dressed, grabbed my phone and computer, and jumped in the car. I was relieved to see that my GPS said I would get there in an hour.

About 40 minutes into the drive, I noticed something a little weird. It normally gets light here around 7:00 a.m., but with the clocks set to Standard Time, it should now be around 6:00. My car clock said it was 6:30, but it was still pitch black outside! 

Then dawn broke over Marblehead! It was 5:30, and none of the clocks in my apartment or car had been set back. My computer and phone had been on chargers, and my watch was in sleep mode, so I hadn't checked the time on them. Of course, Alexa knew it was only 4:30. Why didn't I figure that out? Duh!

Despite my bumbling early start, today was a much shorter one at Dana Farber. I didn't need to wait around for hours monitoring for side effects, so I got a blood draw, premeds, then the dex dosage, waited the prescribed hour to get the Dara injection, and left. The whole process only took about 3 hours, which should be the norm going forward.

I was curious about what my test results might look like one week into my clinical trial. I was hoping at the very least that the upward trends of my Kappa light chains and M-spike might have slowed a bit or even leveled off.

I haven't gotten my monoclonal M-spike electrophoresis results yet, but I did get my light chain report this afternoon on the Patient Gateway. I was blown away. My Kappa light chains have dropped all the way back into the normal range! Here is the graph of past results:

Kappa light chain history

This is so exciting!!! The entire last year's history of my Kappa light chain inexorably rising has been undone just one week into the trial. This was the only indicator that my MM had relapsed. Does this mean I may be back in remission already?

I don't want to get too carried away here. This is just one parameter to track. There may be other indicators that are not responding as well (M-spike?). Who knows? But I sure am happy about this! Am I on the right clinical trial or what? Yahoo!