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.