Hi everyone,
I haven't been on here for a while…it feels good to post again.
Before my 3rd infusion on April 19, the only side effect I was having was some diarrhea, for which I was given Endocort EC, and I was actually kind of wishing for more (last time I had a bad rash too)…well be careful what you wish for!
Hi everyone,
I haven't been on here for a while…it feels good to post again.
Before my 3rd infusion on April 19, the only side effect I was having was some diarrhea, for which I was given Endocort EC, and I was actually kind of wishing for more (last time I had a bad rash too)…well be careful what you wish for!
A day or two after that, I developed diarrhea, really badly. The Endocort was no longer controlling it, so Dr. W. put me on Prednisone.. Of course I wasn't happy about that, but what the heck, we would just get me stable and taper me off.
Then the following week, I was having bad diarrhea again and I was doubled over in pain. They had me go to the Urgent Care at Sloan (their version of the ER). Two doses of Dilaudid helped for about 15 min after each dose, although I had stopped going by then. Dr. W. came and ordered a CT scan; he said that it looked better than he expected and dx'd mild colitis. He did say, "Karen, we wanted an immune response, and you definately got one!" Then they pumped me full of more steroids, and blessed relief. It was like magic.
In the hospital he said he didn't know if I could get the 4th infusion, but since then I've been weaning off the pred., down to 40 mg/day with the intention of being off in a couple of weeks. G-d willing, I'm scheduled for my 4th infusion on May 24th. Even if I couldn't get it by then, it can be stretched out more, even more, apparently than the 16 weeks that is in the protocol. I don't know how anyone willingly takes steroids. I have big chills, neuropathy in my feet and horrible GERD. My gastro prescribed Omeprazole, which did nothing, but Nexium is working well. I think my case is somewhat complicated by the fact that I had a gastric by-pass about 6 years ago. I find myself unable to eat most foods, and for the first time in my life, dairy is a big trigger (even lo fat cottege cheese, etc.) I'm only able to eat poached eggs w/white toast, chicken in soup, and turkey slices. I've lost weight and any steroid-induced energy is gone (although who knows how I'd feel without them…maybe much more fatigue.)
The good news is that the mets have stopped spreading. I go to the onc derm every 2 weeks and he freezes what's left on my scalp/face/neck and in my ear. (sorry this is still bold, I can't get it off.) Then I apply Aldera to everywhere he's frozen. The most stubborn spot is in the ear canal, because he can't spray directly in but has to put gauze in and spray that. Aggressively! I take Oxycodone 1/2 hour before he starts and I still almost fall off the table. But I couldn't care less about the pain. Even the ear is getting better with this system. Also, we left one spot untreated so that if it gets larger, it would be the measurable disease required for Anti PD-1 trials. Yesterday when I went, I felt that it had flattened a bit, he wasn't sure, so he photographed it against a ruler. (should have done it last time, but nobody's perfect.) Also, I have white hairs growing in my tweezed eyebrow and chin hair, which Dr. W. said is a great sign. So, I am cautiously optimistic.
I think that's about it…sorry this is so long, but there's so much unknown about Yervoy, I wanted to provide as much info as possible.
Take care my friends,
karen
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