combined immunotherapy ipilimumab and nivolumab

is anyone else out there on this treatment? 

My husband 52, has stage 4 kidney cancer and is struggling with extreme fatigue loss appetite and diarrhoea since being on this treatment? Anyone else been through this or on a similar treatment ? We are finding this very tough? I’d love to hear others experiences? 

  • Hi Shubbery99 , My hubby is also on ipilumamab and nivolumab,  Sorry to hear you are going through this horrid time , My hubby had his right kidney removed 10 years ago , it came back on the site that the kidney was removed from 3 years later so another op was done, he was absolutely fine didn't have any therepy then kast September it was  discovered it had spread to his ribs ,lungs and spine which he recieved radiotherapy for, He started on the immunotherapy in March this year he had both therapies ,then every 2 weeks for12 weeks he had a single dose of nivolumab,  the first 6 weeks after starting the treatment were terrible,  the diarrhoea totally floored him to a point he was hospitalized as his pain meds were coming straight through him,  which in turn caused extreme fatigue also nausea so he lost his appetite,  each thing that cropped up they had a treatment for it ,some weeks the treatment was delayed , things had settled down , then thursday this week he had the double dose again , the side effects at the moment appear to be swollen hands and feet and a rash which again he hss been given medication for,  Hope this helps its such a difficult time for you both .x x

  • Hi Amye, thank you for your reply my husband has the treatment every 3 weeks, and since treatment started he’s been pretty much in bed exhausted. So we are now 4 weeks in and yes diarrhoea is also flooring him. It’s green! Hadn’t thought about other meds not being absorbed. He was very sick this morning. You mentioned each side effect they had treatment for - like what?  We don’t have any pain relief and Imodium for diarrhoea doesn’t work? This all feels very new and I’m worried I’m not doing enough ?? He’s also taking  Ondansetron anti sickness but again this doesn’t really have any effect?? Loss of appetite drives me mad as he’s lost 1 stone already and has no energy. Seems your husband feels the same? Any top tips??!! No rash yet but we have had swollen feet. Thank you for taking the time to reply it’s so nice to chat to someone who understands x 

  • Hi Shrubbery99,  When i said treatment I meant i should of said meds to counteract the side effects,  Hubby found the ondansatron anti sickness didn't do anything for the sickness ,its finding one that works we tried various ones and found metrocloprmide was the best out of all of them , I bought some immodium from the chemist which done nothing at all ,mentioned it to the doc at Christie's where he has his treatment and they prescribed the loprerimide from their pharmacy and found it helped more the the shop bought one , i also gave him dyoralyte to replace bidy salts , i spoke to our GP when he wasn't eating and losing weight rapidly and she prescribed some cartons of 40 sips jucies for him  , we solved the problem of meds not being absorbed by changing most meds to liquid form , eg effervescent paracetamol , fentanyl pain patches instead of oxycontin capsules,  plus oxynorm liquid , things change from day to day i go from one day thinking he has improved to the next day he is really unwell plus dealing with appointments, Doctors etc its not easy , if you are in any doubt at all ring the help line they can give you valuable advice plus they will put everything down in his notes for the next time  he sees his consultant,  on one occasion i rang the NHS helpline and they had to speak to the hospital so i might aswell of rang the hospital directly .

  • So I’m doing loperamide and dyoralite - and interesting ondansetron didn’t work for you guys. We also have fortisips and Fortijuice. Good idea re liquid paracetamol - I’ve had to google oxynorm and OxyContin! Not heard of these fellas. 

    Completely  feel the same lurching from one day to next just as I think he looks better we get the next sledgehammer ! 

    We have also been in and out of hospital having blood transfusions, ulcer treatments, and yes I do have a 24 hour number - but they aren’t helpful. I resorted to getting the gp to do a home visit on Friday and I’m catching up with him again tomorrow! 

    Gutted as consultant and gp recommended palliative team referral. Even more gutted when gp started discussing non resuscitation. Not giving up the fight just yet!! Quite upsetting!!

  • Hi , I’m sorry to hear your husband is having problems with immunotherapy, I am having Pembrolizumab which is like Nivolumab for metastatic melanoma, but my side effects both times have been minimal. (I had Pembro for a year April 2016 to 2017, and again from June 2018 and I will be on it until March 2020) When you start the drug they give you a 24 hour hospital number to ring if you are having side effect problems I have rung it once when I had an all over body rash the nurses were so helpful, I had a weeks delay for the next treatment and they arranged for antihistamine tablets and cream for the rash. You could give them a call if the medication you have for side effects isn’t working, they might be able to change that for your husband. I know sometimes there’s a feeling that you just need to carry on regardless but there is guidance on what you need to tell them about in between appointments, that’s what the number is there for, so that they can treat side effects before they get worse. For melanoma about 50% of patients on Ipi Nivo have a spell in hospital due to side effects unfortunately, but it also has very good results. 

    Theres a bit of info on Nivolumab in this link

    [edited I have just read your post where you say your 24 hour line don’t seem helpful, I’m sorry to hear that, and that they mentioned a palliative care team. When I came out of hospital in 2015, my Gp referred me to the palliative care team for pain relief purposes so the team instead of an out of hours locus could help with changing pain meds and sickness meds so I’m hoping the referral is a good thing rather than an end of life type experience]

    Best wishes, I hope things improve for you both.

  • Thank you for your message - really good to hear your experiences yes I have to admit I freaked at the mention of palliative care - and perhaps your experience may be the more measured one we need! It’s all such a roller coaster of emotions! Thank you for the info link x 

  • I can understand that rollercoaster of emotions, it’s not easy changing treatments and awaiting to see if there’s improvement in how your husband feels and the scan results. At 4 weeks in having had Ipi, it’s early days, I have known some melanoma patients who have had to stop due to side effects but having had 2 doses of Ipi, it had already jump started their immune system and they have stayed stable. I am one of the lucky ones that became a complete responder very quickly, but then had a recurrence a year later, my Pembro at the moment is an adjuvant treatment after surgery to remove a Pembro resistant node. 

    Giving you a virtual hug as you sound like you need it tonight. 

  • I have no experience of nivolumab, I'm still first line with Pazopanib, but have had quite significant weight loss due to sickness and diarrhea. I've been through 4 anti nausea meds and am also not on metaclopramide which has definitely been the most successful. Re Loperamide - I'm not sure if you know, but you can take up to 6 a day - although I was told in clinic 8. I've fortunately never needed to do that but it's good to know it's an option. 

    I find when I have diarrhea it triggers the sickness too, so if there's any way to get that under control you might see a double benefit.

    My appetite at times has been horrific. I've always found melon to be a good kickstarter and when I've been really poorly it's helped me to eat even when I've not wanted to. Plain ham sandwiches with cheap ham on white bread have also been a staple at times. I also have complan as a bulker for when I really struggle with eating.

    Hope you manage to find a balance asap.

  • Hi jo 

    thank you so much for your reply - interesting you have been through 4 anti sickness meds - I think we need to try metaclopramide next. Did you have any blood transfusions as Hubbys HB levels seem to drop post treatment and he needs a top up! I think you are right about sickness and diarrhoea being linked. Hubby is getting fed up with me constantly trying to get him to eat - solid food seems to be a no no at the moment!! I’ll keep trying! Melon is next on the list thank you x 

  • No, I've been lucky and not needed any at all. 

    Although it's not ideal in this weather soup is another option, especially if it's homemade and totally blended.

    Lots of people talk about stronger flavours to combat the taste side effects etc. but I've actually found the opposite, I go for bland and it doesn't kickstart the nausea.

    Oh - and ice cream for me too when nothing else works lol.

  • Ah ha soup ice cream and fortisips smoothies is all he can do! His face was a picture when I presented beautifully cut melon today! Again another disaster! 

  • Ah what a shame Disappointed:(

    It's so difficult - I know my husband is much more bothered about me not eating than I am so I can imagine how it is for you too. Really hope you start to see an improvement as he settles into the treatment

  • Many thanks for the support - yes I’m becoming more distressed re lack food than he is ! 

    I mean I know the beautifully cut melon was only chunks and not shaped but a lotus flower - but did it really deserve the abuse!!! 

    Thanks again for responding - much appreciated - back to the blender !!!!

  • When I was on Pazopanib 2013 to 2016  I was prescribed a named patient only antisickness drug :

    Levinan ((levomepromazine)

    I took it every night with the Pazopanib as a precautionary measure, as advised. This seemed to do the trick.

    Best of luck !