It's been a while since I posted one of these. That's because I went a month without chemo while I was in Paris and then figured it was hardly worth doing the test until I had gotten home and restarted the chemo for a month. And the news is good:
I don't like this Empliciti stuff, but at least it's working while I wait to get to the top of the waiting list for the CAR-T treatment. I really, really hope that's soon, and I hope I'm one of the lucky ones who gets a strongly positive result from it. I'm really getting tired of chemo, especially after two recent rounds of being off it for a month and rediscovering what that's like.
In the meantime, would you like to see a 40-year record of my weight? Of course you would!
The first 25 years of this chart I did from memory because I just happened to remember my occasional adventures with dieting over that period. Starting in 2009, however, Kaiser started weighing me every time I went in for an office visit. I got curious about this a few weeks ago and extracted it all.
As you can see, I started losing weight in 2014 before I started chemo. I can only assume that the multiple myeloma affected my appetite during the few months that I had it but didn't know it. Then my weight plummeted during the first round of chemo and the stem cell therapy. However, as soon as the stem cell stuff ended, I started eating like a horse and spiked up to 240 pounds. After that my weight went up and down, and a careful analysis suggests that the culprit was Darzalex, with an assist from dex. Then, a few months ago, after getting a bad A1C result, I gave up sweets and my weight has since dropped from 267 pounds in March to 247 pounds today. Only another 47 to go!
(The A1C problem, it turns out, is largely due to four years of continuous dex. Apparently this is a well-known side effect. It's yet another reason I'm anxious to get the CAR-T treatment. If it works, I'll be off the dex and my A1C will probably get back to semi-normal levels.)
I have also begun the process to get a slot for Car-T. Currently on a drug holiday due to failure of last regimen of KPd. I’m on the list for Car-T at OHSU in Oregon. Unfortunately, they only perform 8-10 procedures a year. The list is 30 +/- deep and selection is subjective, not first come, first served. So, I will also get a referral to the SCCA in Seattle. Fingers crossed.
I’m about six weeks into my break from drugs. Starting to feel near normal, but also realistic about how long I can avoid treatment.
https://goodbloodbadblood.com/2022/06/23/__trashed/
Be well.
I hope the Car-T practices are growing; there sure seems to be a demand for them. More good luck to you and Kevin Drum.
yes, good luck to you, Kevin and all others waiting
Wishing you that Car-T slot & excellent care.
By the way, some of those treatment event marks are not where they should be on the timeline. "Pom + dex (no darzalex)" is something that happened in the first quarter of 2020, not at the beginning of 2021.
(Reference: https://www.motherjones.com/kevin-drum/2020/05/health-update-48/ )
Glad the numbers have gone down! I'm hoping that you and commenter pmdello can get the Car-T thing soon.
Hope you continue to get good results & also lose the 47 pounds - maybe chasing after Charlie to keep him in your yard & off the fence.
Glad to see your numbers dropping. I hope you get the CAR-T treatment soon. I will point out that the simple passage of time is an actual cause for weight gain, sadly. That said, your losing now and will certainly be healthier all the way around at a lower weight.
Thanks for posting.
I hope they find a way to ramp up Car-T availability.
Good luck for the next few months and beyond.