Advice Needed for Severe Colitis resulting from Yervoy

Terrie,

Sorry to hear about your friend's troubles.  I had the exact same scenario, grade 4 (4.5 if you ask my onc) ipi-induced colitis after 2 doses.  After a couple weeks back and forth at the ER with pain, diarrhea, etc, I landed in the hospital for  9 days.  7 days on IV steroids couldn't get it under control.  I eventually ended up getting Remicade, and that finally did the trick.  I had to get two doses, and I was also on a high dose taper of oral steroids for a couple months.

My advice, DO NOT mess around with colitis.  Has she seen a GI specialist?  I was thisclose to having part of my bowel removed.  On-call surgery literally checked on me every 2 hours for several days to make sure I didn't have a bowel perforation.  It sounds like your friend has been dealing with this for a while, so hopefully hers isn't as aggressive, but I would get her to a GI doc ASAP.  Ask about drugs used specifically for ulcerative colitis if the steroids aren't working.

Terrie,

Sorry to hear about your friend's troubles.  I had the exact same scenario, grade 4 (4.5 if you ask my onc) ipi-induced colitis after 2 doses.  After a couple weeks back and forth at the ER with pain, diarrhea, etc, I landed in the hospital for  9 days.  7 days on IV steroids couldn't get it under control.  I eventually ended up getting Remicade, and that finally did the trick.  I had to get two doses, and I was also on a high dose taper of oral steroids for a couple months.

My advice, DO NOT mess around with colitis.  Has she seen a GI specialist?  I was thisclose to having part of my bowel removed.  On-call surgery literally checked on me every 2 hours for several days to make sure I didn't have a bowel perforation.  It sounds like your friend has been dealing with this for a while, so hopefully hers isn't as aggressive, but I would get her to a GI doc ASAP.  Ask about drugs used specifically for ulcerative colitis if the steroids aren't working.

Terrie,

Sorry to hear about your friend's troubles.  I had the exact same scenario, grade 4 (4.5 if you ask my onc) ipi-induced colitis after 2 doses.  After a couple weeks back and forth at the ER with pain, diarrhea, etc, I landed in the hospital for  9 days.  7 days on IV steroids couldn't get it under control.  I eventually ended up getting Remicade, and that finally did the trick.  I had to get two doses, and I was also on a high dose taper of oral steroids for a couple months.

My advice, DO NOT mess around with colitis.  Has she seen a GI specialist?  I was thisclose to having part of my bowel removed.  On-call surgery literally checked on me every 2 hours for several days to make sure I didn't have a bowel perforation.  It sounds like your friend has been dealing with this for a while, so hopefully hers isn't as aggressive, but I would get her to a GI doc ASAP.  Ask about drugs used specifically for ulcerative colitis if the steroids aren't working.

An oncologist with a "clinical interest" in melanoma is NOT a melanoma specialist and getting an opinion at SK with a melanoma oncologist would be a great idea. Agree with the other poster, this is not something to mess around with and should get to a GI doc right away if she hasn't already. If she has and they can't get it under control, then she should find a different one. Hope she gets this under control soon.

An oncologist with a "clinical interest" in melanoma is NOT a melanoma specialist and getting an opinion at SK with a melanoma oncologist would be a great idea. Agree with the other poster, this is not something to mess around with and should get to a GI doc right away if she hasn't already. If she has and they can't get it under control, then she should find a different one. Hope she gets this under control soon.

An oncologist with a "clinical interest" in melanoma is NOT a melanoma specialist and getting an opinion at SK with a melanoma oncologist would be a great idea. Agree with the other poster, this is not something to mess around with and should get to a GI doc right away if she hasn't already. If she has and they can't get it under control, then she should find a different one. Hope she gets this under control soon.

Hi Terrie,

That sounds pretty awful. Has she been seen by a gastro specialist yet ? 

This isworth a look as infliximab resolved 100% of the higher grade cases. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4913344/   Might be worth asking about as it isa long time since October.

She could try changing to an ulcerative collitis friendly diet and make sure she includes prebiotic foods.

Have heard that probiotics can be helpful when this is a problem and have used them myself whilst on ipi nivo as a good gut microbiome should help the treatment work, if the mouse studies translate to humans.

I use Biokult- and VSL3# every other day. There are studies that show the VSL product can help with ulcerative collitis in particular pouchitis, and it is approved for this purpose as a prescription product in the UK. 

If this has been going on for months no wonder she reaching out for help… Don't know much about the hospital but maybe a second opinion on side effect management by a melanoma specialist might be an idea ?

I'm in checkmate 401 where they are investigating if the side effect profile of ipi nivo is better if managed by experience immunotherapy docs, but this is not a USA trial.

This link https://clinicaltrials.gov/ct2/results?term=ipilimumab+melanoma&type=&rslt=&recr=Open&age_v=&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=NA%3AUS%3APA&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&rcv_s=&rcv_e=&lup_s=&lup_e=

shows melanoma trials with ipi currently recruiting in Pennsylvania. If your friend is willing to consider a second opinion she can extract from the trials list where the research centres are in Pennsylvania and by rights that should be where the expertise in managing the drug side effects are located.

Think I'mout of ideas now..

Wishing you both well,

Deb

w/NCT02739386?term=ipilimumab&rank=10.

Hi Terrie,

That sounds pretty awful. Has she been seen by a gastro specialist yet ? 

This isworth a look as infliximab resolved 100% of the higher grade cases. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4913344/   Might be worth asking about as it isa long time since October.

She could try changing to an ulcerative collitis friendly diet and make sure she includes prebiotic foods.

Have heard that probiotics can be helpful when this is a problem and have used them myself whilst on ipi nivo as a good gut microbiome should help the treatment work, if the mouse studies translate to humans.

I use Biokult- and VSL3# every other day. There are studies that show the VSL product can help with ulcerative collitis in particular pouchitis, and it is approved for this purpose as a prescription product in the UK. 

If this has been going on for months no wonder she reaching out for help… Don't know much about the hospital but maybe a second opinion on side effect management by a melanoma specialist might be an idea ?

I'm in checkmate 401 where they are investigating if the side effect profile of ipi nivo is better if managed by experience immunotherapy docs, but this is not a USA trial.

This link https://clinicaltrials.gov/ct2/results?term=ipilimumab+melanoma&type=&rslt=&recr=Open&age_v=&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=NA%3AUS%3APA&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&rcv_s=&rcv_e=&lup_s=&lup_e=

shows melanoma trials with ipi currently recruiting in Pennsylvania. If your friend is willing to consider a second opinion she can extract from the trials list where the research centres are in Pennsylvania and by rights that should be where the expertise in managing the drug side effects are located.

Think I'mout of ideas now..

Wishing you both well,

Deb

w/NCT02739386?term=ipilimumab&rank=10.

Hi Terrie,

That sounds pretty awful. Has she been seen by a gastro specialist yet ? 

This isworth a look as infliximab resolved 100% of the higher grade cases. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4913344/   Might be worth asking about as it isa long time since October.

She could try changing to an ulcerative collitis friendly diet and make sure she includes prebiotic foods.

Have heard that probiotics can be helpful when this is a problem and have used them myself whilst on ipi nivo as a good gut microbiome should help the treatment work, if the mouse studies translate to humans.

I use Biokult- and VSL3# every other day. There are studies that show the VSL product can help with ulcerative collitis in particular pouchitis, and it is approved for this purpose as a prescription product in the UK. 

If this has been going on for months no wonder she reaching out for help… Don't know much about the hospital but maybe a second opinion on side effect management by a melanoma specialist might be an idea ?

I'm in checkmate 401 where they are investigating if the side effect profile of ipi nivo is better if managed by experience immunotherapy docs, but this is not a USA trial.

This link https://clinicaltrials.gov/ct2/results?term=ipilimumab+melanoma&type=&rslt=&recr=Open&age_v=&gndr=&cond=&intr=&titles=&outc=&spons=&lead=&id=&state1=NA%3AUS%3APA&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&rcv_s=&rcv_e=&lup_s=&lup_e=

shows melanoma trials with ipi currently recruiting in Pennsylvania. If your friend is willing to consider a second opinion she can extract from the trials list where the research centres are in Pennsylvania and by rights that should be where the expertise in managing the drug side effects are located.

Think I'mout of ideas now..

Wishing you both well,

Deb

w/NCT02739386?term=ipilimumab&rank=10.

My Mom had a severe case of colitis and they tried prednizone, but even after a month it wasn't much better. Eventually it resolved and they gave her a 3rd dose of Yervoy because she had brain mets and Keytruda wasn't available.  She ended up with severe colitis again and the prednizone didn't work this time.

What did work was a enema. It was some sort of prednizone enema I think. My Mom felt better the next day and the colitis was gone in about a week.

My Mom had a severe case of colitis and they tried prednizone, but even after a month it wasn't much better. Eventually it resolved and they gave her a 3rd dose of Yervoy because she had brain mets and Keytruda wasn't available.  She ended up with severe colitis again and the prednizone didn't work this time.

What did work was a enema. It was some sort of prednizone enema I think. My Mom felt better the next day and the colitis was gone in about a week.

My Mom had a severe case of colitis and they tried prednizone, but even after a month it wasn't much better. Eventually it resolved and they gave her a 3rd dose of Yervoy because she had brain mets and Keytruda wasn't available.  She ended up with severe colitis again and the prednizone didn't work this time.

What did work was a enema. It was some sort of prednizone enema I think. My Mom felt better the next day and the colitis was gone in about a week.

I'm not sure if this helped me but after 4 doses of the combo, 4 single doses of nivo and back to 1 combo dose I never got any stomach/intestine issues. I like to think because I was already on hydrocodone for other issues and I ate a pbj sandwhich everyday to stay "thick" that this helped. I have had at least one side effect since the second week and at times had 3 or 4 going on at the same time but never stomach issues. Like I stated, don't know it my pain medication and eating peanut butter had anything to do with it or not.

I'm not sure if this helped me but after 4 doses of the combo, 4 single doses of nivo and back to 1 combo dose I never got any stomach/intestine issues. I like to think because I was already on hydrocodone for other issues and I ate a pbj sandwhich everyday to stay "thick" that this helped. I have had at least one side effect since the second week and at times had 3 or 4 going on at the same time but never stomach issues. Like I stated, don't know it my pain medication and eating peanut butter had anything to do with it or not.

I'm not sure if this helped me but after 4 doses of the combo, 4 single doses of nivo and back to 1 combo dose I never got any stomach/intestine issues. I like to think because I was already on hydrocodone for other issues and I ate a pbj sandwhich everyday to stay "thick" that this helped. I have had at least one side effect since the second week and at times had 3 or 4 going on at the same time but never stomach issues. Like I stated, don't know it my pain medication and eating peanut butter had anything to do with it or not.

As others have noted, it sounds like Remicade is in order.  And you can't go wrong at Sloan or NYU.

As others have noted, it sounds like Remicade is in order.  And you can't go wrong at Sloan or NYU.

As others have noted, it sounds like Remicade is in order.  And you can't go wrong at Sloan or NYU.