Let the Games Begin

Yesterday was my first day at Dana Farber for Cycle 1, Day 1 (C1D1) of my Mezigdomide/Daratumamab/dexamethasone (Mezzi/Dara/dex) clinical trial. I started this trial just in time since the trial is closing to any more applicants after today! Phew! I feel very fortunate. Thank goodness for Dr. Richardson. 

It took most of the day. By "most of the day" I mean I was there from 7:30 a.m. until 7:00 p.m. It was a long day for a couple of reasons. First, after my blood draw and meeting with the nursing team, I went to the Infusion Center at around 10:00 a.m. to get my study drug (Mezzi) along with the subcutaneous Dara injection and dex. The Mezzi and dex are both in pill form. However, Dr. Richardson hadn't yet put in the order for the Mezzi, so I had to wait until 12:15 for the prescription to be filled. In the meantime, I had to take a bunch of pre-meds, including Decadron (dex), Tylenol, Singular, and Benadryl. 

After I got the Dara shot in my stomach at 12:30, I was forced to wait for 6 hours of observation to see if I had any adverse reactions. It wasn't completely boring, because the nurse, Dannielle (who is great!), had to take triplicate EKGs (!) along with various blood draws every hour! I was also able to squeeze in a Zometa infusion while there. 

I had a window in the infusion room, so I got to watch the traffic outside, which was marginally more exciting than not having a window. I had a fold-down chair, so I tried to nap a couple of times between procedures. Fortunately, I had no reactions to the Dara, so I was prepared to go home at 6:30. 

The EKG machine they use is old and slow. The first reading seemed to indicate that I was having a heart attack! I felt fine, so I was pretty sure that that was not happening! All subsequent readings were fine, however, so they determined that it was just a glitch artifact of the EKG machine. So far so good. However, just as I was about to leave for home, I was told to wait for the EKG doctor to go over all the charts again to verify that I could go. Fortunately, he must have noticed that I hadn't had a heart attack, so he signed off on it, and I got on the road around 7:00 p.m. 

Now that I'm on this clinical trial, I must start taking a bunch of additional meds. I already take about 10 prescriptions and supplements every day. Along with the Mezzi pill, which I must take daily for one week on and one week off, I now also have to take acyclovir, aspirin, Bactrim, and Pepsid (I can't take PPIs like omeprazole anymore). 

I have to figure out a schedule on how to take these drugs. I'm supposed to take the Mezzi in the morning, and I can't have coffee or any hard foods 2 hours before or after! If I pop the rest of those pills in the morning without eating anything or having my coffee, I will probably upchuck the whole lot! Hmmm. 

One of the nurses said that one of her patients wakes up early (4:00 am) to take the Mezzi and then goes back to sleep for a few hours so she can have her normal coffee and breakfast when she awakes. That sounds good to me because I usually stagger into the bathroom around 5 or 6 a.m. to pee. That would be a great time to take the Mezzi. 

I am scheduled to go in early in the morning again for the next few weeks. I won't have to do the 6-hour wait again, but at first, the days will include some wait time. After that, I sweet-talked the scheduler, Carmen, (smooth talker that I am) into moving most of my appointments to late morning or early afternoon. 

In the meantime, Holly and Ryan, who live in Boston, have insisted that I stay over with them on my early-morning appointment days. I'm very grateful! They are the best! And I get to see my gorgeous and irrepressible 4-year-old granddaughter, Kaia!

Kaia and Holly

To my chagrin, I see that I am scheduled for another bone biopsy on December 4. After my last experience, I want some drugs to ease the pain the next time. Since I won't be able to drive afterward, Holly has offered to drive me there and back that day. She is such a sweetheart! 

I took 40 mg of dex today, which is a lot. I'm writing this at 1:30 a.m., and I'm not even sleepy yet. If past experience is any guide, I won't get much sleep tonight. I remember during my first bout with MM, I would get up at night after my high-dose dex and think about doing something crazy, like reshingling the roof, painting the house trim, trimming all the bushes and trees, and patching all the cracks in the driveway. Like right then, with a flashlight! 

Now that I'm in an apartment, I don't have any homeowner tasks to do. However, I might want to get up and vacuum the rugs, do the laundry, re-organize my closet, clean the refrigerator, wash the windows, sort through items to donate to charity, water all the plants, or do some other task that hasn't occurred to me yet. Who knows? I'll lie awake thinking about it and let you know in a future post.

Bone Marrow Biopsy

I am now officially enrolled in the Mezi-Dara-dex clinical trial! I made it! My first treatment is scheduled for Monday, October 30, followed every week on Mondays for the next two months. 

However, I needed to go in for one more test beforehand: a bone marrow biopsy. So Friday morning I went into Dana Farber for this procedure.

Let me tell you about this. I laid flat on my stomach while the procedure nurse, Melissa, probed for the right spot on my hip bone to insert the "instrument".  Here is what it looks like:

This device sports a needle that seems to be much longer than it should be! 

The first thing she did was to inject a local anesthetic, first into the muscle, and then deeper into the bone. So far so good. Not too bad yet.

Now I've had these bone marrow biopsies several times before, but it has been quite a few years since my last one. The last time I took some drugs ahead of time to ease the pain. I was able to do that since Gretchen was there to drive me home. 

Now that I am alone and hadn't arranged for someone to drive me back afterward, I decided to tough it out like a he-man and do it cold turkey. Maybe it's like women giving birth. They forget how painful it was the last time, so they do it again, or so I'm told.

The thing is, once this instrument of torture dives deep into the bone marrow, the anesthetic doesn't really help. Multiple samples have to be taken and the marrow has to be sucked out. It's quite painful and time-consuming. To make things worse, I had also volunteered for them to take extra samples for research purposes. Duh!

Melissa (the torturer) kept saying, "I'm almost done". I don't know how many times she said that...I lost count. As I lay there gasping for breath, I was mentally kicking myself for trying to macho this out, or maybe I was actually kicking myself... I don't remember. 

After it was over, I clambered unsteadily off the torture rack and staggered out of the chamber with my undershirt hanging out of my pants. I didn't care. Next time, just give me drugs, lots of them!

I've Relapsed!

I met with Dr. Richardson at Dana Farber yesterday to enroll in the Mezigdomide (Mezi) clinical trial. In anticipation of my MM relapsing, I signed all the consent documents. I also went through a battery of tests yesterday and today, including providing a 24-hour urine sample, a transthoracic echocardiogram, supplying at least 20 vials of blood (a new record!), an X-ray skeletal survey, and an EKG.

The one test result that I was particularly keen on seeing was the Free-light chain blood test. One criterion for MM relapse is that the involved free light chain (in my case, Kappa) increases by more than 100 mg/L from its normal value. 

In my last post, I showed a chart of those results for the past several years. Up until 2023, my Kappa light chain has hovered in the normal range at around 18 mg/L. Then on my last visit in September, it had spiked to 112.8, almost meeting the relapse criteria. As I anticipated, the result from yesterday was 120.7, so I am now in a clinical MM relapse. The good news is that I am now officially enrolled in the Mezi clinical trial before the October 31 cutoff date. I should start the trial in a couple of weeks.

Dr. Richardson was extremely upbeat about this clinical trial. He said that the response rate to this protocol is over 80%, which is very good! He will be presenting trial results at the next ASH conference in December. He also said that this is a good trial for my high-risk t(4;14) cytogenetics. I wish I had recorded his remarks about this because I didn't understand half of what he said. However, the fact that he is confident gives me confidence.

So it begins! I will occasionally update this blog when I have some results to share.