Diarrhoea and Nivolumab/ Ipilumab and Nivolumab

Hi did you get any systoms for tumor in his body. I'm just worried as waiting for pet scan results as have a small amount in lymph node from slnb. I feel fine.

Ti

Hi how long did you have to wait to get pet scan results im just wondering when I'm going to get called. They said at pet scan appointment it will go to specialist in 3 to 5 days so I guess that will be 1 -2 weeks before I get.

Hi Dots, my wife had trouble with this too,upped the steroids then 160mg intravenous for 4 days then had to be in hospital a week for obs,rehydration and infliximab infusion for the immunotherapy induced colitis.Had to suspend the immunotherapy for 2 months,had another infliximab infusion and has managed to get her first 2 nivolumab sessions in.She got her 4 nivo/ipi sessions in as she was determined due to a mostly positive CT,but finally caved in to the tummy troubles.She’s doing amazing but being troubled by bad pains in her hips,knees and ankles now.

Sorry! Late to the party. I had my 3rd Ipi/Nivo treatment for lung melanoma three weeks ago. Since then have had diahorrea - up to 12 times a day. Anyway, it turns out I do have colitis as my faecal procalitonin was 5000. It should have been 50. After a few days of steroids (Budesamide) it’s settling a bit am only going 5 or 6 times a day. It’s stilll watery and explosive.

Fourth treatment delayed for two weeks. The consultant said he may just give me one drug rather than two, or reduce the dose. It’s seems not many people make the 4th treatment due to side effects. Am hoping it continues to improve so that I can continue treatment. 

My lung tumour is a very rare primary melanoma - BRAF non V600 mutation, codon 597. I hope the treatment melts it all away! 

Hello Kim_sing!

I'm sorry to hear that you have colitis. It's great that you got 3 doses of Ipi/Nivo in. Fantastic! You're totally right that lots of people (maybe the majority? I don't know the exact statistics) don't make it through all 4 double doses of Ipi/Nivo. I've been re-assured that it is all down to genetics and there is absolutely nothing I could have done differently that would have made be capable of tolerating it.

My consultant told me that "it was the plan all along to reduce the dose to the single Nivo". That reassured me. Sure, originally the plan was to give me 4 double doses, but he also meant that one of the plans was to switch to the single Nivo earlier than four. It seems that the double dose of Ipi/Nivo has a long, productive after-life, after you stop taking it. There are a couple of interesting threads about that on here.

You wrote you're hoping the colitis will improve so that you can continue the treatment. I recently got a lot of reassurance about this which I'd like to pass one. Now, my colitis was slightly different: I 'only' had 5 episodes a day, but I felt very sick with it, and had nausea, night-time stools, and incontinence. I was given steroids (Prednisolone, 70mg) and I've been on Pred, although tapering off for 2 months (I got Covid during this time, which made me worse again but then I got better.) Because it looked like the colitis was coming back during the last leg of tapering off, I was given a 2nd steroid: [brand-name] Clipper (beclometasone). It was really good and it made me better. AMAZINGLY - !!! - my consultant said I'm allowed to take Clipper while having Nivo! If necessary, I can stay on it for a couple of months. Finally, they he also said, if Clipper doesn't work, there is a 3rd heavy duty steroid called Infliximab (given via IV drip) that produces excellent results. He said I could take a up to a 4 month break in treatment and it would not affect the effectiveness of the drug.

I'm still tapering off Pred while taking Clipper. Apparently, once you're down to 10mg of Pred, you can restart. So my situation right now is that I've no poo-poo colitis (fingers crossed), I feel stable (apart from steroid craziness) and I have my next Nivo appointment booked in for the 27 November if all continues to go in the right direction.

Dots

I also meant to say that my consultant suggested I try a Gluten-Free diet. He said he'd observed Ipi/Nivo leading to some gluten intolerance (though not allergy) in his patients. I'm sceptical but I'm following his advice. I'm also trying to eat low fibre, and no lactose. It's hazelnut milk and rice krispies for breakfast for me! It's totally yum,

Dots