› Forums › General Melanoma Community › Ipi journey continues (long)
- This topic has 12 replies, 5 voices, and was last updated 14 years, 6 months ago by
NYKaren.
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- July 1, 2011 at 9:40 pm
I've been having rather a rough time of it. After developing diarhhea fairly early on (1 week after first infusion), Dr. Wolchuk put me on Entocort EC. I had a gastric bypass roughly 4 years ago, and I think that made me susseptible to gastric side-effects. He hadn't seen anyone present with diarhhea so early (shortly after 1st infusion). After being on the bland diet and 8 days ago having a colonoscopy that did not indicate colitis, Dr. W. took me off the Entocort. After the colonoscopy, I just kept going and going.
I've been having rather a rough time of it. After developing diarhhea fairly early on (1 week after first infusion), Dr. Wolchuk put me on Entocort EC. I had a gastric bypass roughly 4 years ago, and I think that made me susseptible to gastric side-effects. He hadn't seen anyone present with diarhhea so early (shortly after 1st infusion). After being on the bland diet and 8 days ago having a colonoscopy that did not indicate colitis, Dr. W. took me off the Entocort. After the colonoscopy, I just kept going and going. The prep was the harshest I've ever taken, and I was still going for days after. I controlled it with Immodium**, then got constipated. Of course, I should have called Dr. W., then, but did not. I still thought I could manage on my own.
My bypass dr. was very concerned, so on Thurs. night (after my resuming the runs and having pain) he met me at the ER, and performed an exploratory laproscopy for suspected hernias, which was negative (but still necessitated an overnight in the hospital in addition to the surgery.) I have an upper endoscopy scheduled for Thursday at 6:00 PM (my 3rd Ipi infusion is scheduled for that day as well.)
Today I spoke w/Dr. Wolchuk and he put me back on the Entocort. We had a very frank discussion…he told me that if the diahhrea is not controlled after 2 days on the Entocort, they might have to go to Prednisone, and if that doesn't work, to go off the Ipi. Needless to say, that freaked me out. the ** next to the Immodium is because he told me that Immodium is NOT the treatment indicated for Ipi diarhhea. The steriod is. He told me that they want to hear from me whenever ANY possible side-effect occurs. They want to hear from me 3 times a day, every day, if necessary.
Dr. Wolchok was one of the pioneers of Ipi, and he has a "perfect track record of managing his patients' side-effects." Meaning, he hasn't lost anyone yet, and he doesn't want me (or anyone else) to break that record. Of course, that means stopping the Ipi if he feels it's necessary.
So far today, the Entocort seems to be working, so I'm praying it doesn't progress to needing Pred. The good thing about Entocort is that it works only on the gut and not systemically. If I have to go on the Pred, then my whole immune system will be affected, and the Ipi works by BOOSTING the immune system, so it makes sense that it would compromise the effects of the Ipi. He did tell me that he will continue the treatments if I have to remain on Entocort and it's working, so that was comforting. As much as I like him is how much I just don't feel connected to one of his fellows, who always says "well, we'll have to see if you'll be able to continue the treatments…"
Sorry if this is rambling, but I've been want to post for over a week–just been too scared & depressed. So far, only other side-effect has been mild rash/itching. This isn't easy–I'm working full time. I only took one day off after the surgery because I've taken so much time off already for the melanoma surgery/radiation/ipi. So, I'm very much looking forward to this 3 day weekend of doing nothing but lounging around and reading. A Sunday night movie, which my daughter just suggested, would be a high-point.
Hope everyone has a good weekend.
Karen
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- July 2, 2011 at 12:21 pm
Karen,
Sorry to hear that you'e going thru these side effects. I am an ipi responder so know some of what you may be going thru. My side effect was different but it did require me to go on Prednisone to control the side effects. Important to note that while your results may vary, for me ipi seemed to have kept working for me while I was on steroids. (see my Patnet for all details). I had heard from my Dr. at the time that he had other patients who also saw some benefit of ipi while on steriods – so don't give up hope if you have to go on them. Your Dr. gave you great advice – tell them EVERYTHING. While FDA approved, Yervoy (ipi) is still new and the Drs need to hear from us pioneer patients who take it. I wish you well on this journey!
Rocco
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- July 2, 2011 at 12:21 pm
Karen,
Sorry to hear that you'e going thru these side effects. I am an ipi responder so know some of what you may be going thru. My side effect was different but it did require me to go on Prednisone to control the side effects. Important to note that while your results may vary, for me ipi seemed to have kept working for me while I was on steroids. (see my Patnet for all details). I had heard from my Dr. at the time that he had other patients who also saw some benefit of ipi while on steriods – so don't give up hope if you have to go on them. Your Dr. gave you great advice – tell them EVERYTHING. While FDA approved, Yervoy (ipi) is still new and the Drs need to hear from us pioneer patients who take it. I wish you well on this journey!
Rocco
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- July 3, 2011 at 2:52 am
Thank you, friends, for your kind replies. It means so much to me to have people who understand everything I'm saying. My family and friends are more than wonderful, but you guys really get it, unfortunately.
You're right, of course, Rocco, we are "pioneer patients." You helped me make an attitude adjustment.
Take care,
karen
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- July 3, 2011 at 2:52 am
Thank you, friends, for your kind replies. It means so much to me to have people who understand everything I'm saying. My family and friends are more than wonderful, but you guys really get it, unfortunately.
You're right, of course, Rocco, we are "pioneer patients." You helped me make an attitude adjustment.
Take care,
karen
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- July 5, 2011 at 12:13 am
Hi Karen,
I just wanted to add my experience. I was on Ipi for 4 infusions (back in 2008) and then developed severe headaches for 2 weeks. An MRI revealed that I had hypophysitis ( swelling of the pituitary gland) It is one of the immune breakthrough events (as is diarrhrea ) which correlates with best outcomes. I had to go off Ipi and first was put on Prednisone. Then I was put on Hydrocortisone which I remain on to this day. It is a hormone replacement since the pituitary never regained it's function. I went into the trial with resected melanoma and my doctor said my immune response was a response he sees in only 10-20% of patients. Ipi boosted my immune system at least 5 times over baseline.
I may be on steroids for many years but I am glad I had the response I did. Like Rocco said we are pioneer patients.
I hope you are able to remain on Ipi .
God Bless and much success,
Jim M.
stage 3C
NED 3 years, 8 months
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- July 5, 2011 at 2:11 am
Wow, Jim, that's amazing.
I never looked forward to side effects before! Thankfully, the runs are well under control with the Endocort…
I've also got the rash bad now…I only wish I could take a bath, but can't due to the lap. surgery I had on tuesday night.
But I'll gladly take it all if it works!
I'm praying that this monster will just flake off my face as I've heard it has done on others'. I'm also praying that these white lines around the tumors are a good sign too. (picture a black head of broccoli with white outlinines around the little florettes.)
I get so much anxiety in the week leading up to my next infusion…will he give it to me, or won't he? I know only the bloods they take 2 hours before infusion is scheduled will hold the answer, it's so silly to sit here (scratching) and worrying.
just watched the beautiful fireworks on t.v. and saw all the military families in the audience. G-d bless them all, and G-d, please bless all of us too.
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- July 5, 2011 at 2:11 am
Wow, Jim, that's amazing.
I never looked forward to side effects before! Thankfully, the runs are well under control with the Endocort…
I've also got the rash bad now…I only wish I could take a bath, but can't due to the lap. surgery I had on tuesday night.
But I'll gladly take it all if it works!
I'm praying that this monster will just flake off my face as I've heard it has done on others'. I'm also praying that these white lines around the tumors are a good sign too. (picture a black head of broccoli with white outlinines around the little florettes.)
I get so much anxiety in the week leading up to my next infusion…will he give it to me, or won't he? I know only the bloods they take 2 hours before infusion is scheduled will hold the answer, it's so silly to sit here (scratching) and worrying.
just watched the beautiful fireworks on t.v. and saw all the military families in the audience. G-d bless them all, and G-d, please bless all of us too.
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- July 5, 2011 at 12:13 am
Hi Karen,
I just wanted to add my experience. I was on Ipi for 4 infusions (back in 2008) and then developed severe headaches for 2 weeks. An MRI revealed that I had hypophysitis ( swelling of the pituitary gland) It is one of the immune breakthrough events (as is diarrhrea ) which correlates with best outcomes. I had to go off Ipi and first was put on Prednisone. Then I was put on Hydrocortisone which I remain on to this day. It is a hormone replacement since the pituitary never regained it's function. I went into the trial with resected melanoma and my doctor said my immune response was a response he sees in only 10-20% of patients. Ipi boosted my immune system at least 5 times over baseline.
I may be on steroids for many years but I am glad I had the response I did. Like Rocco said we are pioneer patients.
I hope you are able to remain on Ipi .
God Bless and much success,
Jim M.
stage 3C
NED 3 years, 8 months
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