Hello Friends and Myeloma Warriors. Cheers to all of us making it to December 2020!
I am so beat up.... Day 3 of 40mg Dex Steroids, plus Kyprolis IV Mon and Tues, and last night 2 of my little doggies woke me up around 3am to go outside, so I didn't get much sleep. Yes the Roids are taking their toll on my sleep, but I truly think this High Dose is doing some hard core good. My Dr is not happy with my perspective, as she is more "aggressive" with wanting to do (multiple) "current treatments" more than me. Most of you would probably side with her, but honestly, at this point, surviving 11 years with this Monster, I only want to feel good as many days as I can, and obvi if I do new treatments I will have new side effects, blah blah blah. I used to be ok and even look forward to what new Immunotherapies would do to my Myeloma, but not now, not after what stikn Elotuzumab did to me in the summer!
But as my Chemo Pharmacist said... "Numbers Don't Lie"... and the high dose Dex steroids and Kryprolis is doing something good, as you saw on my last post! And what's that other quote, "if it ain't broke, don't fix it" right. Meaning if this is working, why change it up...
But my Dr is worried about the high dose, long-term affects of Dex Steroids on my bones, A1c, and body in general. But again, at this point in my battle, I say "who cares"... well not totally, as I do want more time, but heck, if I can feel good, be home, and pummel Myeloma at the same time, I'm on board.
So she also is very worried about the migration of my Myeloma from my Inside my bones to Outside, as my Scans have shown. I have since (this year) Radiated the head-skull-sinus mass, lung mass, clavicle/collarbone and rib fractures, and now we have to deal with the biggy- The Abdominal Mass. Maybe we can Radiate that annoyance too. Ugh... dang you Myeloma, stop trying to killllll me. So over being a sickie.
I learned a new Vocab word, or perhaps it was mentioned previously, and I just had so much else consuming my overworked brain, that I didn't really absorb it. My Dr and the scan and biopsy reports now term and reference my Myeloma as.... EXTRAMEDULLARY. Ugh, thanks Myeloma, more research, reading, understanding and deciding what to do... I just want to Swiffer, do laundry, chores, be outside in the sun and pet my horses and other critters, lol... but I am sooooo fatigued and exhausted... I do so little, even when pushing myself so much... And then I wind up fracturing something, pulling muscles, twisting nerves, etc. I hate pain, I hate challenges now. I just want simplicity and all the "feel goods". Cmon Myeloma, grant me a wish or 2 for a change!
"Extramedullary multiple myeloma (EMM) is an aggressive subentity of multiple myeloma, characterized by the ability of a subclone to thrive and grow independent of the bone marrow microenvironment, resulting in a high-risk state associated with increased proliferation, evasion of apoptosis and treatment resistance."
Lovely, thank you Myeloma...
Here's the "good news" screenshots again from my previous post: