Ipi/Nivo colitis

Hi Timbo699

I haven't had these drugs, so can't comment on diet and lifestyle, but I noticed that your post hadn't had any replies yet. 

I know that quite a lot of people here have had this combo so I'm tagging lgrgdg90 and Shebu into my reply to you as I know they still contribute to this group and I'm hoping they can pop on and tell you what diet and lifestyle changes they made, if any.

If you type 'ipi/nivo' into the search bar at the top of the page it will bring up lots of previous posts which mention this drug combination. You could have a look through some of those to see if diet and lifestyle is mentioned.

Wishing you all the best when you restart

x

Hi Timbo699, for me when I had the diarrhoea and colitis I had to chane my eating habits completely and switch to really bland food. But it was also trial and error, I could eat mild cheddar but no other types, other dairy products was off the menu. However I know others have had no issue and it varies from person to person. My diarroah never went away but episodes was controlled by taking the full dose of loperimide (Imodium) and colitis treated with steroids. I was also very weak which limited my mobility but when I could I did go for very short walks.

It's hard but fluids intake was important as I was losing so much etc.

I do hope you don't have those symptoms good luck.

Hi I had the four duo treatments and didn’t have diarrhoea. I felt tired at times and my joints ached. I tried to eat healthily with lots of fruit and veg. I walked in the fresh air as often as I could.I did find it easier when I finished the treatment and went on to just Nivolumab. I rested when I felt I needed to and tried to listen to my body. Hope you do well once you continue your treatment.If you have any problem contact the oncology department or specialist nurse who will be able to reassure you or help with medicine to help with side effects. Everyone responds differently. I had worse side effects in dam trab tablets than ipi .  Take care and look after yourself .

Hi… I made it to the third combined treatment before the colitis got me… and it did get me, I had a rough few weeks ( was on steroids to try and control it) and was eventually treated with infliximab (IV). It stopped the diarrhoea over night but the abdominal discomfort continued for a few more days and 2 weeks on whilst the colitis has disappeared my energy levels are low and the tank is empty… but every day is an improvement. I was put onto a bland BRAT diet at the peak of it…

Weirdly the colitis activity only appeared from 2am to 8 am… I suspect due to the timing of my steroid consumption, this also meant sleep was a challenge but I did mean I could still work as by 8am my stomach had settled. I found eating little and often helped… three normal meals was  not doable… and lots of water… plain water. 
I also has the skin rash and itching but that was steroid managed as well.

What I would say is that even given the above, the combo treatment is working visibly for me (metastatic melanoma, brain and all) and the early signs are positive…

I hope that helps

Many thanks for the replies. There’s some interesting insights. Much appreciated and good luck to all! 

My husband has just had one infusion and suffered tummy upset within 7 days.  He’s now on steroids but no colitis.  We make sure his fluid intake is high and diroalyte taken daily. He’s had no other side effects. Healthy diet, no restrictions on dairy so far. 

when he had problems we spoke to his care nurses and they sorted blood tests, stool sample and steroids very rapidly.  Diarrhoea all but stopped. 

wishing you all the very best. 

Thanks Jilly Your husband’s experience sounds very like mine! Onwards and upwards

Hi I have just come across your post. My husband has had nivolumab permanently stopped due to it causing ulcerative colitis he had had infliximab and is on steroids I'm just wondering if you had your nivolumab stopped and if so what treatment are you currently on? We are seeing the oncologist tomorrow hopefully to get a plan going forward.

My ipi/ nivo was stopped due colitis I was on steroids for 6months - related to colitis and brain swelling after SRS. I have had no cancer treatment since my last ipi nivo in august last year but my last round scans showed some new cancer in my pelvic bone and am just waiting for more scans before further treatment is decided on. 

Thank you for replying. I hope you get a plan together soon. It's such a worry isn't it. My husband has bowel cancer but I came to this group as it was recommended to me because more people have nivolumab for melanoma than bowel cancer.