2nd Dose of Ipi/Nivo and Side Effects

Hi Dots,

I went through the four doses of Ipi/nivo immunotherapy back in February to April. I was already off work because of radiotherapy on my head.  For me the side effects were mild - fatigue, cough, and an itchy skin rash. I’m now back at work continuing single dose nivo and my tumours have shrunk so it is working.  I try not to worry about the things outside my control that may not happen.  For me it was a positive experience.  Based on this I think you’ll sail through the treatment with few side effects. 

Wishing you all the best on this journey

David

Hi Dots,My wife has stage4 melanoma,it moved to her lungs,she’s had brain surgery 3weeks ago and been told today there’s numerous other sites in her body.She has so far had 3 sessions of double dose therapy,after her first she was in bed for 3 days with flu like symptoms,had ulcers on her tongue,a rash and real fatigue.Her second resulted in itchy rash,sore body and again fatigue,her 3rd coincided with the brain surgery but I think the symptoms were agin the itchy skin and fatigue and she’s about to have her 4th double dose session next week.She’s doing amazing,we still can’t believe this is all going on but what I’m trying to say is you’re doing amazing too,it’s very daunting not knowing what to expect but you do get used to it.There are symptoms but everyone is different,you will be strong,you will get there,there will be set backs but as long as you’re vigilant to any serious ones you can do it and you will find a way. x

Hello

my husband has just had his 7th immunotherapy treatment ipi & nev with no side affects so far at all ….. 

Hi, my husband has had 7 immunotherapy treatments with no side affects at all so far….,

I managed 2 treatments of Ipi/nivo but after this my liver blood test came back with a score of 807 and normal is lower than 37!  I had immunotherapy induced hepatitis and was immediately admitted into hospital where I had to have a daily steroid infusion. This was in July and after several days I was discharged home and put on prednisolone tablets. Had to have regular blood tests and steroid doseage changed in line with results. Then in August became disoriented, tired and weak. Back in hospital,  chest infection. For reasons I won't go into, went home next day with antibiotics and higher steroids dose. Pleased to say saw Clinical Oncologist yesterday, Sept 5th, to find out liver bloods back in the 'blue', score of 34, no new melonomas discovered and metastases, which had taken up resident in my lungs, had reduced. It was decided it was too risky for me to continue with both treatments and tomorrow I start on nivo every 4 weeks until June 2025, with scans every 3 months. Steroid dosage now 5mg. My first stay was very positive and I just keep this one in mind. My attitude has been positive all the way through and I really believe this helps. Just remember, every one reacts differently. 

Hello DragonLady70,

I was very sorry to hear that your liver levels came back with such a high score of 807. You win! :) After 2 doses of Ipi+Nivo, I had dysfunctional liver levels also: of 370. At the time, I also had acute nausea because there was a problem with my anti-sickness tablets. (I was not able to take them because I'm also taking Citalopram. I was left with nothing for a few days.) I found the liver dysfunction ("immunotherapy-related hepatitis") very painful for a few days. The Acute Oncology Service did their best to find out the source of the problem. There was a delay while they gave me the right anti-sickness tablets, then anti-biotics for a chest infection they thought I had, then finally they gave me 70mg steroids for the liver. I started feeling better immediately. The steroids cleared up the liver, no problem. Hallelujiah!

My consultant said I had Grade 3 liver dysfunction/hepatitis  - which describes liver levels from 300 to 2,000 (!). I was not hospitalised, which was great. I was treated from 9am-6pm over 3 days as an in-patient in AOS.  Since your liver level was much higher than mine, you must have had a really hard time. I really feel for you. I'm glad your liver is back to normal now, and now new melonomas and metastases were discovered. That is great news. Thanks for sharing your story. 

Like you, I am now switched onto the single dose of Nivo. The liver experience has actually made me feel more calm. I know my team can help me if I am feeling sick.

With warm wishes,

Deirdre

Isn’t it strange how some people have no side affects and others so , my husband has just had his 11 th dose of immunotherapy, consultant told us yesterday his 2nd scan will be in a week to check all is still working well.  My husband has treatment every 2 weeks a single,  a single then a double immuno, seems ok on it.  He has however just had an eye test to be told he has to be referred to hospital as his blood vessels are now damaged behind his retina, wonder if this is the immunotherapy……they give him a fluid drip with anti sickness in so he has this intravenously, he has no so sickness at all. It works. 

Wow, I must be one very lucky person. With my liver hepatitis I had no indication anything was wrong except for the high numbers. Didn't feel ill, definitely no sickness/nausea. My stay in our local Beacon Centre was brilliant. Staff were excellent and as for the food, it was worth being an inpatient just for that. I did feel a fraud taking up a bed but they assured me it was necessary. They let me out for a couple of days over a weekend but I did too much and was glad to go back!  My second inpatient stay wasn't at the Beacon but in the actual hospital and that was a nightmare. Talked them into letting me go home one after one night. Enough said. Just going for another blood test today to see if my 5mg dose stops or carries on. Only thing affecting me at the mo is fatigue and I don't like it. I'm not one for doing nothing. Hopefully our joinery on one dose will carry on working for us. Take care and thank you.

Hi Deidre,

My dad has had his 2nd combined dose & is really struggling with the nausea. Can you recommend any anti sickness medication that works?

 It is great to hear your story and how they are managing to overcome the problems and continue treatment.

 All the best

 Katie

Hi Katie, maybe call the hospital they should be able to give him something for the  nausea. You don’t want him loosing weight by not eating.  

my husband after calling the hospital was given a very large anti sickness pill that lasts around 5 days, not the usual little pills they give you.  Then. After that for each treatment they put an anti sickness bag of solution  through his drip before the actual immunotherapy goes through, this works . No sickess at all . 

Hope you get him sorted x