On the positive side, my adrenals seem to be functioning, so I'm off hydrocort. Just to make sure, I'm going for a stimulation test beginning of Sept., sooner if I don't feel well. Also, after second infusion of Remicade, my colitis completely disappeared. As I've said, it's like a miricle drug.
On the positive side, my adrenals seem to be functioning, so I'm off hydrocort. Just to make sure, I'm going for a stimulation test beginning of Sept., sooner if I don't feel well. Also, after second infusion of Remicade, my colitis completely disappeared. As I've said, it's like a miricle drug.
On the other hand, none of my treatments have stopped the progression. Radiation results were temporary–side effects are permanent. (bald spot, lack of saliva, can't open mouth wide, etc) i wouldn't even give them a second thought if it had helped, but, as soon as the radiation was stopped, the mets were on the march again.
Yervoy #1 I got through with minimal side effects–was kept on Budesonide for diarhhea and dealt with fairly severe rash but alas, didn't stop the mel.
Got through every single bag of IL-2 like a champ, was doing so well after second round, I went back for a third. Guess what–no lasting remission.
Yervoy #2 caused colitis and colitis treatment caused adrenal insufficiency. Yervoy was March/April, finally back on my feet.
Continual freezing of mets/applying Aldera is of minimal help, some mets do disappear, but others keep spreading. The met in my ear is getting closer to the drum. Seeing surgeon at Sloan who has ear experience on 8/28. (oh the joys of trying to get doctor appt's in August–two docs tried getting me in sooner!)
I have not been eligible for PD-1 trials when there were seats…usually no measurable disease on NON-IRRADIATED skin. NOW, I'm on my fourth treatment, so that disqualifies me from Merck, and Remicade disqualified me from BMS.
My fourth and latest treatment is Temodar. If Temodar does nothing, Dr. Wolchok will ramp up to combo chemo. He told me that there will be other drug companies developing Anti PD-1 drugs, and his hope is to keep me stable until another trial becomes available. Of course I am BRAF and C-Kit negative. I am feeling small nodule on my collar bone, will ask surgeon to do a needle-biopsy.
Dr. W. was thinking down the road about TIL, so he tested my blood, and of course, I don't have the right (something or other) that NIH would want, so another dead end.
I do think that all these treatments might have slowed things down, the glass cannot be half empty, but must remain half-full.
That's my update. Take care everyone; you're all in my thoughts.
Karen
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