Sorry I didn’t post this in the last few days … Friday was a long day for me and this weekend was spent trying to sleep and spend time with the wife and daughter.
So last Thursday I went in for labs and height/weight tests to help the oncology team come up with the right dosage. Then Friday I had to be at CBCI at 6:30 am (had to get up at 5:30 to make that with time for coffee) and ended up leaving at about 6:45 pm. Normally it shouldn’t take nearly that long but as I’ll explain they have to do a bunch of pre-dosing of antihistamines, corticosteroids and antipyretics (aspirin, etc.), and I *think* they give you more on Day 1 as well.
Before the fun began Friday I met quickly with Dr. Matous, still in biking regalia, who went through the treatment with me and then noted that in August they may be doing some CAR-T stuff at CBCI. That would be timed pretty well for me, although as a portfolio manager I’ve put my clients in enough biotech and CAR-T companies that I know how dangerous early-stage trials of that can be (reference Juno Therapeutics CAR-T troubles). He also mentioned that, especially given how high my Myeloma numbers have gone during this chemotherapy holiday, that our new goal is more getting rid of the disease than keeping it at that manageable state (where we were happier with slower decreases in the primary metrics and much lower MM #’s).
All of which (those primary metrics) I left sitting on my desk this morning, and HealthOne’s patient portal is terribad. I’ll post them up this week, but I think my IgG is higher now than when I first got diagnosed — the M-Spike wasn’t back from the lab folks yet on Friday so not sure where that is yet.
So anyways, I got pre-dosed with some basic stuff as mentioned before, and they had more ready — specifically Oxygen, since apparently Dara can mess with your respiratory system and with all the pneumonia and 46 years of abuse, wear and tear mine isn’t exactly 100%. My nurse for the day was the awesomesauce Melissa — going to try to highlight a few of those folks here since they’re putting in the work.
Things went fine in the first hour, although I was exhausted — had trouble sleeping the night before and on top of that they loaded me up with Benadryl which knocks me out on my ass. When they began increasing the flow rate of the IV, however, I started getting the chills and severe neuropathy (pins and needles) in my hands, as well as that irritating calf pseudo-neuropathy I got with my last IViG treatment. At that point they stopped the Dara, gave me more anti-side-effect treatments after getting approval, and then started it up again. I think it took about an hour for the side effects to subside, but my memory is a bit hazy from Friday.
I know at some point I had mental track of everything they had given me but unfortunately I forgot it all. Thankfully HealthOne has
a handy patient portal that has all of this stuff an asstastic excuse for a patient portal that had no information from Friday. Sorry!
That’s basically it — I tried to sleep for a bit with some luck until just after lunch, albeit with being woken up every 30 minutes so Melissa could take my vitals. I spent the rest of the day playing on the laptop and cranking metal (headphones, obviously) while just sitting in this little infusion room, munching on a couple of Trader Joe’s apple breakfast bars that I brought (delish) and chatting with Melissa. Zero luck bribing any of the nursing staff to get me a Starbucks down the block, mostly I think because they had purchased a super-sub to commemorate a nurse’s last day that day and nobody went out to lunch. No biggie.
Spent the weekend not feeling too bad although all the IV steroids messed with my sleep schedule quite a bit and I had some minor nausea. Thankfully our weekend schedule allows for things like sleeping in since Amy and Ari go to Lifetime Fitness each morning for a few hours. Took a nap or two but just tried to focus on not being a steroid-Nazi (success!) and just relaxing.
I think my next treatment is this Friday … Dara is given, at least in my case, once a week for eight weeks IV and then every other week for eight weeks IV. Mix in the IViG every month and I’ll be seeing a lot of the CBCI folks, but that’s all good. Need to remember to bring Melissa something, although a box of cupcakes for someone who had a hummus sandwich for lunch seems like a poor idea. I’ll come up with something.