Hi all! I've been thinking of you and reading up on what I've missed, and I've been sending healing vibes to a number of you! But I wanted to wait until I had my CT scan results before posting, so here I am.
I have been anemic since spring; the immunotherapy drug I'm on with my chemo causes my skin and mucosal tissues to bleed. But this has sometimes been dramatic; "some" (not huge bleeding, but still.....) nosebleeds, mouth bleeding, vaginal bleeding and of course rectal bleeding. I had an upper endoscopy in summer (all was fine) and my onco wanted me to have a lower scoping also, just to check for tears in any tissues... so DH and I drove the 220 miles to our old
location and had my beloved surgeon do the scoping. He said the J pouch looks good, although I have impressive hemorrhoids. (I told him that before he did the procedure!)
Then I had my quarterly CT scan. Unfortunately, the pelvic tumor has grown some, though not very much.... but any growth is bad! I'm in the Northeast USA, and my local onco is sending me to Dana Farber for a consult, to check (1) what kind of chemo might be best going forward and (2) if he has any clinical trials that I might try. My appointment there is tomorrow.
In summer, the immunotherapy, which at that point was keeping the tumor completely stable, gave me a condition that looked as though I'd scraped my face along the pavement! My cheeks were bloody/rashy. SO gross. And now, in my last 2 week session, my skin has begun to show a rash.... so my onco suggested I skip the December chemo sessions so I can heal up. I worry about
the tumor in a month of no chemo, but I'm also kinda happy to know I'll be feeling well over the holidays, especially since, as many of you know, I do church work, and the Christmas season is intense.
When I had my scoping, my nurse told me he had UC! He is on meds I'd never heard of. How wonderful! When I was diagnosed, the options were sulfsalazine and prednisone. Period. So much progress has been made, even if we don't have a cure yet. I also told him about
this site. I've found y'all to be good thinkers and sometimes way ahead of the medical profession.
I'll post about
my consult. And I send good wishes to you all!
Post Edited (songlady) : 12/4/2024 2:50:41 PM (GMT-5)