Diarrhoea and Nivolumab/ Ipilumab and Nivolumab

Hi Dots!

Sorry to hear you’ve been feeling rough. My partner had absolutely no side effects until 1 week after his 3rd ipi/nivo. Started with stomach cramps then loose stools - the worst was about 10-12 episodes throughout the night. Really not fun :( They put him on 60mg prednisolone with a 10mg wean every 3 days to try & get him off them before the 4th ipi/Nivo but diahorrea came back every time he got down to a low dose (5-6 times a day). He couldn’t eat anything but toast & rice & lost about 10kg - was all a bit grim & scary. They decided to cancel the last cycle & gave him a 6 week break before starting the single Nivo. His stomach improved a lot during this time & he he focussed on trying to improve his gut health with probiotics & fermented foods. He’s had 3 cycles of single Nivo now & his stomach is completely back to normal. He’s put on 7kg & is having lots of fibre and Mediterranean diet. 

So there is definitely light at the end of the tunnel - just have to be patient & ride it out with lots of bland food, water and Dioralyte. Have they put you on any steroids to help manage it?? 
Hope this is a somewhat reassuring for you!

x

Good Vibes Only,

Thanks a million for your reply. I've found it really, really assuring. I do declare that I have benefitted enormously from you sharing your husband’s story! I'm so glad he is well in his tummy again and glad to hear that he is blazing along with the Nivo. So brilliant.  Long may it last.

(Gallow humour alert: I am so jel he lost 3kg overall. I have lost no weight at all   - outrageous!!! - and put on 1kg.  Apparently, my 5-week dose of steroids prior to this balanced it out. l I've been robbed.)

If it helps anyone out there, here is what the doctors in the Acute Oncology Service [AOS] did in my personal situation (of course, every situation will be different): lots of blood tests + extra blood tests, urine sample, poo sample. They rang my consultant to ask him if they could prescribe steroids and he ordered a same-day CT scan of abdomen first.

Some test results are not back yet as the poo needs to be cultured. (Yuk,) But I was told my bloods tests can back normal and CT results showed no sign of colitis. However, they said colitis can't always 100% be diagnosed by blood and CT. For now, they think it's probably not colitis, so are keeping a colonoscopy up their sleeve for later. Hopefully, it will stay there.

Based on the facts that, according to the AOS doctor, I had Grade 2 diarrhoea symptoms, and enough tests came normal, I was prescribed 70mg Prednisolone steroid tablets. I have my monthly consultant appointment coming up in 8 days; he will review everything.

I've learned a lot about diarrhoea. It will not be relevant to everyone. Maybe only 1 in 5 of us on Ipi, Ipi+Nivo, and Nivo? 

(1) Learned how to spell diarrhoea, but I reserve the right to misspell it randomly

(2) Number 6 on the Bristol Stool Chart (the one before "explosive, liquid, watery stool": obviously diarrhea) is very confusing. Is it diarrhoea? The description "fluffy pieces with ragged edges" is rubbish. "Fast, brown rope coming out of your bum that makes a cowpat" is better. I encountered one cancer nurse who said Number 6 isn't diarrhoea. Hmmm.I believe from now on I will categorise this for AOS as 'mild diarrhoea'. And explain what I mean.

(3) What was important – more important than knowing about Bristol Stool definitions - was that I felt unwell from it, although my temperature was normal. The day I didn't go out for a short walk because I wanted to sleep all day was the turning point. I got the help I needed very soon after that. Having diarrhoea and feeling unwell with it is an important sign.

(4) Quality not just quantity counts! Not just number of episodes but: urgency, incontinence, night poos, food in poo, volume of poo (small, medium, large)

(5) I love to hear that so many people have had the good fortune not to have side effects on Ipi, Ipi+Nivo, Nivo. The majority, I think. However, I also love to hear from the not insignificant minority of people who have had side-effects too. This is because I wrongly used to think 'It's my fault. Look at all those others out there who are doing it right. They have no side effects!' Or: ' It's because I'm wrong/bad/genetically deficient/an alien-human mutant science experiment.' Or: 'Maybe I'm doing something incorrectly. What could they be doing that I'm not doing?' All this is wrong. There is nothing I could have done that I wasn't already doing that could have prevented the diarrhoea.

Today, I am flinging my giant incontinence panties in air, literally and metaphorically. I feel a lot better since I started the steroids. And I'm really reassured from Good Vibes Only that if diarrhoea comes back, I just need to be patient. I can get back on track.

Thanks so much again. 

With warmest wishes,

Dots

Ha! Thankyou for this extremely entertaining response. 
Absolutely nothing you could have done to combat this! It’s all down to a very complex genetic equation deep within your cells. 

Interestingly, most data actually propose more a favorable and durable response to immunotherapy in patients with side effects, associated with a longer overall survival.

We’re being seen at a very large London hospital & our oncologist said only about 1 in 7 of her patients make it through the 4 rounds. And the ones that have to stop due to colitis/tummy trouble, often have the best response to the treatment, even if they only made it through 1 or 2 rounds. 
All my partners brain mets have shrunk by 60% so this theory looks to be correct for him! 
Hopefully all the ruined undies will be worth it at the end of this bumpy ride 

I hope you are well and treatment is going well for you. Can I ask where in the country/ hospital you are having the treatment and whether there was an issue with funding? I have been told it’s an option for me xxx

I hope you and your partner are well and treatment is going well for them. Can I ask where in the country/ hospital you are having the treatment and whether there was an issue with funding? I have been told it’s an option for me xxx

Hi Sarahbg,

I'm at a major London hospital. I'm at Guys Hospital. There was no issue with the funding for Ipi/Nivo. I think it was a clear case that I should have it. The team at the hospital first helped me through Stage 3 melanoma, and my scans were coming back clear. A year and a half after treatment for Stage 3 stopped, it came back again. So, they started me immediately on Ipi/Nivo. Hope that helps. Dx

Hi Sarah,

We’re at Barts NHS in London. Definitely neverany issue with funding, never even a discussion. They started him a week after seeing the oncologist. Things moved fast!! 

Hi I've just found out I have small amount of melanoma in lymph nodes in groin they did not say which stage but I guess that's stage 3a. Got to have pet ct scan on Tuesday and then to see oncologist not sure what treatment this will be.the nurse said it maybe drug form or by needle in hospital its all so scary. I'm trying not to worry but it is hard to forget about it. I see you have gone through alot.x

 A

Hello Miss Mole,

I agree hard to forget about it and not worry. I also agree it is scary. You speak the truth!  I am currently in limbo with colitis (very manageablem, though: my standard of living is pleasantly quite okay really). My Nivo treatment is on pause. I feel very anxious. I just want some more. Like Oliver Twist. More please!

BTW, I found the actually getting the treatment (you mention drug form or needle) very do-able.When I took drugs at home (targeted therapy), it was fine. When I had drugs intravenously, the nurses were so lovely and everything was so calm, that getting the IV drugs was comparable to a going on a train journey. I just had to sit there and be comfortable.

Have you seen the positive and up-lifting BBC documentary about a scientist with melanoma  - Stage 3A, if I remember correctly -  and who was put on targeted therapy? It's really great. He also interviews the guy who won the Nobel prize for inventing immunotherapy.

It's called 'A Year to Save My Life'. 

https://vimeo.com/338412027

It helped me be a bit more calm, though obviously, it's all a bit of a roller-coaster.

Warm wishes,

Dots

My partner started the combined immunotherapy Ipi/ Nivo yesterday. One dose down three to go!  So far he has just got a sore throat and raging thirst. We have heard about the diarrhoea & other side effects, but    hoping to avoid most of them if we can.  We will watch the documentary you mentioned. It sounds interesting. Thanks for the information.