Now that I am in Cycle 4 of the clinical trial, the strict medication scheduling rules have been relaxed. I am now taking the weekly dose of dexamethasone at home instead of at DFCI. This is a real treat, because up until now, I had to wait exactly one hour at DFCI after receiving my MLN 0708 dose before they gave me the dex. Now I can go home after the MLN, saving an hour of dead time at the clinic every week. Even better, I am now allowed to take the dex whenever I want to, instead of one hour after the MLN. This is great news, because I can take it later at night, just before going to bed, allowing me to get a full night's sleep before the steroid effect kicks in. This has worked well for me the last two weeks. Now I only have the second night where I have a little trouble sleeping (such as now, which is why I'm wide awake writing this blog post). After the second night, the steroid effect wears off, and I'm usually fine for the rest of the week.
But wait, there's more! I now don't have to go into DFCI at all on Day 22 of each cycle, since the only medicine I am scheduled to take that day is the dex, which I take at home! So I get a week off every month! Hooray! Not only will this save on the commuting to Boston, but this will now make it easier for us to schedule vacations.
There is still one odd thing about their medication rules. I have to bring my Revlimid in with me every week. They then take the bottle to the pharmacy, take out one capsule, and write a prescription for that one capsule for me to take with the MLN! Huh! What's that all about? I can take the dexamethasone at home every week whenever I want, and I can take the Revlimid at home every day pretty much when I want, so why they have to prescribe me one Revlimid out of my supply every Tuesday to take with the MLN is beyond me. Maybe there is some valid medical reason for this, but I'm chalking it up to bureaucratic overkill. In the grand scheme of things, I can live with this, but really now.
I keep being reminded how fortunate I have been so far with my MM. During my Day 8 DFCI visit yesterday, I was talking to my nurse, Heather, about how I was feeling. I told her I sleep more and get tired more easily than I used to, and that I notice from the blood tests that my anemia is still present. She told me that 80-90% of her patients have much worse anemia, and many of them spend much of their time in bed. I can still do pretty much anything I used to do, within reason. For example, I played 9 holes of golf today (even though I sucked at it) and then used a power blower to clear leaves from my yard before teaching my Robotics elective in Haverhill this afternoon. So I guess I don't have any reason to complain. I also told Heather that I am not having any noticeable side effects from the medication (except the minor sleep problems from the dex). She said many patients have bad side effects from the Revlimid, and she was surprised that I could even sleep at all after taking the dex. This is not to say that I won't have my share of issues to deal with as time goes on, but I have been very fortunate so far. I know I've said this before, but I'm very thankful for that.