Dr. Tricot chose to administer CcD every other week, so my bone marrow would have time to recover between cycles. I started round two of my Cytoxan/Kyprolis/dexamethasone (CcD) yesterday afternoon. If you recall, the combination really wiped me out two weeks ago.
So I get Kyprolis infusions (common name, carfilzomib; hence the small “c”) on days 1,2, 15,16. On days 1 and 15, I take 10, 50 mg capsules of Cytoxan (the capital “C”) followed by 40 mg dex (cap “D”) day 1 and day 2.
AUTHOR’S NOTE: In the grand scheme of things, my confusion and disapproval over how doctors create and use acronyms is petty. But where’s the logic, people? Use a little common sense! My new convoluted acronym rests my case, confirming that a lot of doctors can’t write. First, why mix common drug names with trade names? I do it, but only because I tend to use the most oft used form. Take pomalidomide, for example. The trade name, Pomalyst, has never caught on. So I use the common name, pomalidomide, or POM for short. (Just made that one up!) So, I get Cytoxan (trade name for cyclophosphamide). That’s the cap “C.” So far, so good. Small “c” next? In what world? Most now use Kyprolis anyway–and it’s shorter. And it begins with a cap “K.” Cap “D” for dex? Few use “Decadron” anymore. Dex day kidding aside, this type of thing is important. Acronyms (docs use way too many anyway, often forgetting to layout the full name up front. They just jump right in with the acronym… Sorry. Channeling my patient activist! So, CdD should really be CKd. I’d know what that is without looking it up. Cytoxan/Kyprolis/dex. I can’t be feeling too bad if I have time to rant on and on about acronyms! Either that–or dex –has me channeling bitchy today!
That felt good! Now, instead of taking my dex, along with Cytoxan and my infusion at the clinic the first day, I delayed and took 40 mg dex last night (along with two Ativan). It worked! Other than a sour stomack–and who wouldn’t have one of those the day after swallowing 10 Cytoxan capsules, and 10 dexamethasone tabs the day before–I feel like my good old self today. How I feel after my next infusing at 1 PM is hard to say, but I’m going to hold off taking the second dex bomb until later, too.
I can put up with a lot; pain, lack of sleep, fatigue. Not a fan of vertigo and/or an upset stomach; hence my ongoing reticence to revisit stem cell transplants. My stomach was doing cartwheels for close to three months following my first auto. The doctors were beginning to suspect something something they call “auto graft vs host.” Just about the time I was referred to a gastroenterologist, things starting improving a bit, saving me from that nasty stainless steel scope they gag down your throat to take a look around.
If anything changes I’ll let you know. In the meantime, Feel good and keep smiling! Pat