Ipi/nivo – colitis and vomiting? – Melanoma Research Foundation

This topic has 30 replies, 5 voices, and was last updated 9 years, 5 months ago by kylez.

Post

- July 30, 2016 at 12:59 pm
- Quote
Ace226
Participant
Hi Everyone,

My dad has been doing well with metastatic melanoma for several years now but they told him that it now looks like leptomeningeal metastases which we are all very worried about CSF was negative and he doesn't have side effects of LM which is encouraging.

The doctors tried the Ipi/nivo combo (he had Ipi 2 yrs ago and was on opdivo for 8 wks this year) but with in three weeks he started vomiting and having diarrhea now he has been in the hospital for one week and they are having trouble getting the diarrhea and vomiting under control. They say he has colitis. Has anyone had a side effect of vomiting from yervoy or this combo? Tomorrow they may try Remicade if things don't get better today.

I am very worried about him just wanted advice on if anyone had experience the similar side effects. And how they were treated

Also if anyone knows about better treatments for LM let me know.

Thank you!!

Viewing 11 reply threads

Replies

- - July 30, 2016 at 3:56 pm
  - Quote
  Casitas1
  Participant
  Yes, I had ipi/nivo back in July of last year. I only made it through 2 infusions due to nausea and vomiting. I had pancratitis and had to go on high dose streroids and Remicade. finally subsided after about 6 weeks. Remicade worked well for the diarrhea i had.
  
  Best wishes to Dad,
  
  Paul
- - July 30, 2016 at 3:56 pm
  - Quote
  Casitas1
  Participant
  Yes, I had ipi/nivo back in July of last year. I only made it through 2 infusions due to nausea and vomiting. I had pancratitis and had to go on high dose streroids and Remicade. finally subsided after about 6 weeks. Remicade worked well for the diarrhea i had.
  
  Best wishes to Dad,
  
  Paul
- - July 30, 2016 at 3:56 pm
  - Quote
  Casitas1
  Participant
  Yes, I had ipi/nivo back in July of last year. I only made it through 2 infusions due to nausea and vomiting. I had pancratitis and had to go on high dose streroids and Remicade. finally subsided after about 6 weeks. Remicade worked well for the diarrhea i had.
  
  Best wishes to Dad,
  
  Paul
  - August 3, 2016 at 2:47 am
    
    Quote
    Ace226
    Participant
    
    Thank you! He finally got his first dose of Remicaid on Monday and the vomiting has ceased. He is still having some diarrhea but the urgency is gone… Hopefully this will get better with time. I appreciate your help!
    
    Best,
    
    Alex
  - August 3, 2016 at 2:47 am
    
    Quote
    Ace226
    Participant
    
    Thank you! He finally got his first dose of Remicaid on Monday and the vomiting has ceased. He is still having some diarrhea but the urgency is gone… Hopefully this will get better with time. I appreciate your help!
    
    Best,
    
    Alex
  - August 3, 2016 at 2:47 am
    
    Quote
    Ace226
    Participant
    
    Thank you! He finally got his first dose of Remicaid on Monday and the vomiting has ceased. He is still having some diarrhea but the urgency is gone… Hopefully this will get better with time. I appreciate your help!
    
    Best,
    
    Alex
- - July 30, 2016 at 5:33 pm
  - Quote
  Mat
  Participant
  Remicade is the standard treatment for colitis when they can't get it under control with high dose prednisone, etc. For LM, I'd probably start with MD Anderson. If you "search" under this forum, I think you'll find that MDA seems to be the only institution folks mention for LM.
- - July 30, 2016 at 5:33 pm
  - Quote
  Mat
  Participant
  Remicade is the standard treatment for colitis when they can't get it under control with high dose prednisone, etc. For LM, I'd probably start with MD Anderson. If you "search" under this forum, I think you'll find that MDA seems to be the only institution folks mention for LM.
- - July 30, 2016 at 5:33 pm
  - Quote
  Mat
  Participant
  Remicade is the standard treatment for colitis when they can't get it under control with high dose prednisone, etc. For LM, I'd probably start with MD Anderson. If you "search" under this forum, I think you'll find that MDA seems to be the only institution folks mention for LM.
- - July 30, 2016 at 9:30 pm
  - Quote
  eric w
  Participant
  http://www.onclive.com/web-exclusives/osimertinib-demonstrates-early-efficacy-for-leptomeningeal-disease-in-nsclc
- - July 30, 2016 at 9:30 pm
  - Quote
  eric w
  Participant
  http://www.onclive.com/web-exclusives/osimertinib-demonstrates-early-efficacy-for-leptomeningeal-disease-in-nsclc
- - July 30, 2016 at 9:30 pm
  - Quote
  eric w
  Participant
  http://www.onclive.com/web-exclusives/osimertinib-demonstrates-early-efficacy-for-leptomeningeal-disease-in-nsclc
  - August 3, 2016 at 2:48 am
    
    Quote
    Ace226
    Participant
    
    I saw that but wasn't sure you could get it in the US yet? Hopefully soon. Thank you.
  - August 3, 2016 at 2:48 am
    
    Quote
    Ace226
    Participant
    
    I saw that but wasn't sure you could get it in the US yet? Hopefully soon. Thank you.
  - August 3, 2016 at 2:48 am
    
    Quote
    Ace226
    Participant
    
    I saw that but wasn't sure you could get it in the US yet? Hopefully soon. Thank you.
- - July 31, 2016 at 3:43 pm
  - Quote
  kylez
  Participant
  The full name of the treatment at MDA mentioned here is Intrathecal IL-2. The main doctor at least until recently was Dr. Nicholas E. Papadopoulos aka Dr. Papa. I think he may have left or retired. As recently as 2014 he was still there and doing this treatment but I think he may be retired or he left. I think I read somewhere here it may be done by somebody else at MDA now.
  
  My impression from reading here is that MDA is where there is expertise in treating leptomeningeal melanoma, at least as recently as a couple of years ago.
  - July 31, 2016 at 4:12 pm
    
    Quote
    kylez
    Participant
    
    Hopefully the remicade gets your Dad's colitis under control quickly.
    
    Samantha here on MPIP posted the doctor took over from Dr. Papa and is now doing the intrathecal IL-2. Her name is Dr. Isabella Glitza. Samantha's message on MPIP is here.
    
    There's a clinical trial listed for Memorial Sloan Kettering to treat leptomeningeal cancer including melanoma. I don't know how up-to-date the listing is, but on clinical trials.gov it is here, https://clinicaltrials.gov/ct2/show/NCT00445965.
    
    A trial for another drug, Abemaciclib, at 50+ locations, is here, https://clinicaltrials.gov/ct2/show/NCT02308020.
    
    – Kyle
  - August 3, 2016 at 2:50 am
    
    Quote
    Ace226
    Participant
    
    Thanks for the links. The Remicaid seems to be doing the trick. Thank goodness. I will make sure my dads oncologist is aware of these studies. I know she mentioned the Eli Lilly one in the last but had said the melanoma arm was closed for a period of time. I can't really tell from this but hopefully it is back open. Thanks again!
  - August 3, 2016 at 2:50 am
    
    Quote
    Ace226
    Participant
    
    Thanks for the links. The Remicaid seems to be doing the trick. Thank goodness. I will make sure my dads oncologist is aware of these studies. I know she mentioned the Eli Lilly one in the last but had said the melanoma arm was closed for a period of time. I can't really tell from this but hopefully it is back open. Thanks again!
  - August 3, 2016 at 2:50 am
    
    Quote
    Ace226
    Participant
    
    Thanks for the links. The Remicaid seems to be doing the trick. Thank goodness. I will make sure my dads oncologist is aware of these studies. I know she mentioned the Eli Lilly one in the last but had said the melanoma arm was closed for a period of time. I can't really tell from this but hopefully it is back open. Thanks again!
  - August 3, 2016 at 5:09 am
    
    Quote
    kylez
    Participant
    
    That's great that Remicaid seems to be working.
    
    That clinical trials web site is a good place to get a list of trials, sites, and contacts. But it is not good for indicating current status. I learned that when I was looking for trials. The only reliable way is to be in touch with a given site's clinical trial coordinator or study doctor. Your Dad's oncologist may be in touch with somebody there.
    
    Also, trials present lots of obstacles between inquiring about them through to getting treated. Whereas I'm pretty sure the intrathecal IL-2 treatment at MDA is not a clinical trial. It shouldn't have the set of enrollment uncertainties that come with clinical trials.
  - August 3, 2016 at 5:09 am
    
    Quote
    kylez
    Participant
    
    That's great that Remicaid seems to be working.
    
    That clinical trials web site is a good place to get a list of trials, sites, and contacts. But it is not good for indicating current status. I learned that when I was looking for trials. The only reliable way is to be in touch with a given site's clinical trial coordinator or study doctor. Your Dad's oncologist may be in touch with somebody there.
    
    Also, trials present lots of obstacles between inquiring about them through to getting treated. Whereas I'm pretty sure the intrathecal IL-2 treatment at MDA is not a clinical trial. It shouldn't have the set of enrollment uncertainties that come with clinical trials.
  - August 3, 2016 at 5:09 am
    
    Quote
    kylez
    Participant
    
    That's great that Remicaid seems to be working.
    
    That clinical trials web site is a good place to get a list of trials, sites, and contacts. But it is not good for indicating current status. I learned that when I was looking for trials. The only reliable way is to be in touch with a given site's clinical trial coordinator or study doctor. Your Dad's oncologist may be in touch with somebody there.
    
    Also, trials present lots of obstacles between inquiring about them through to getting treated. Whereas I'm pretty sure the intrathecal IL-2 treatment at MDA is not a clinical trial. It shouldn't have the set of enrollment uncertainties that come with clinical trials.
  - July 31, 2016 at 4:12 pm
    
    Quote
    kylez
    Participant
    
    Hopefully the remicade gets your Dad's colitis under control quickly.
    
    Samantha here on MPIP posted the doctor took over from Dr. Papa and is now doing the intrathecal IL-2. Her name is Dr. Isabella Glitza. Samantha's message on MPIP is here.
    
    There's a clinical trial listed for Memorial Sloan Kettering to treat leptomeningeal cancer including melanoma. I don't know how up-to-date the listing is, but on clinical trials.gov it is here, https://clinicaltrials.gov/ct2/show/NCT00445965.
    
    A trial for another drug, Abemaciclib, at 50+ locations, is here, https://clinicaltrials.gov/ct2/show/NCT02308020.
    
    – Kyle
  - July 31, 2016 at 4:12 pm
    
    Quote
    kylez
    Participant
    
    Hopefully the remicade gets your Dad's colitis under control quickly.
    
    Samantha here on MPIP posted the doctor took over from Dr. Papa and is now doing the intrathecal IL-2. Her name is Dr. Isabella Glitza. Samantha's message on MPIP is here.
    
    There's a clinical trial listed for Memorial Sloan Kettering to treat leptomeningeal cancer including melanoma. I don't know how up-to-date the listing is, but on clinical trials.gov it is here, https://clinicaltrials.gov/ct2/show/NCT00445965.
    
    A trial for another drug, Abemaciclib, at 50+ locations, is here, https://clinicaltrials.gov/ct2/show/NCT02308020.
    
    – Kyle
  - August 3, 2016 at 2:53 am
    
    Quote
    Ace226
    Participant
    
    Thank you. Wondering if I could email someone there. I will try. We went up to MSK in the past and they basically said our hospital was doing everything so I am hesitant to fly him to Houston without knowledge that they can help. I will reach out. I appreciate it!
  - August 3, 2016 at 2:53 am
    
    Quote
    Ace226
    Participant
    
    Thank you. Wondering if I could email someone there. I will try. We went up to MSK in the past and they basically said our hospital was doing everything so I am hesitant to fly him to Houston without knowledge that they can help. I will reach out. I appreciate it!
  - August 3, 2016 at 2:53 am
    
    Quote
    Ace226
    Participant
    
    Thank you. Wondering if I could email someone there. I will try. We went up to MSK in the past and they basically said our hospital was doing everything so I am hesitant to fly him to Houston without knowledge that they can help. I will reach out. I appreciate it!
- - July 31, 2016 at 3:43 pm
  - Quote
  kylez
  Participant
  The full name of the treatment at MDA mentioned here is Intrathecal IL-2. The main doctor at least until recently was Dr. Nicholas E. Papadopoulos aka Dr. Papa. I think he may have left or retired. As recently as 2014 he was still there and doing this treatment but I think he may be retired or he left. I think I read somewhere here it may be done by somebody else at MDA now.
  
  My impression from reading here is that MDA is where there is expertise in treating leptomeningeal melanoma, at least as recently as a couple of years ago.
- - July 31, 2016 at 3:43 pm
  - Quote
  kylez
  Participant
  The full name of the treatment at MDA mentioned here is Intrathecal IL-2. The main doctor at least until recently was Dr. Nicholas E. Papadopoulos aka Dr. Papa. I think he may have left or retired. As recently as 2014 he was still there and doing this treatment but I think he may be retired or he left. I think I read somewhere here it may be done by somebody else at MDA now.
  
  My impression from reading here is that MDA is where there is expertise in treating leptomeningeal melanoma, at least as recently as a couple of years ago.

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Ipi/nivo – colitis and vomiting?

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