Hi everyone,
I am wandering if anyone else has these episodes. I take Cabozantinib everyday and every 4 weeks I have Nivolumab by i.v., about 3/4 days after my iv treatment I get the worst flue Like symptoms. I can’t get out of bed, I can’t walk, eat, drink, I have hallucinations and I’m constantly in and out of sleep, I have diarrhoea and feel very weak all over my body. This last for about 2/3 days then I start to feel normal again.
I’ve been on the treatment for around 5 or 6 months, but this has only just started to happen the last 2 or 3 times. So just wandering does this happen to anybody else or am I just picking something up when my immune system is at its lowest?
anyway I hope everyone is coping well. Take care x
Hello Russell1975
I have just noticed your post has gone unanswered and whilst I can't answer it (I have a different cancer) by me replying your post will be "bumped" back to the top of the forum and hopefully seen and replied to by other Community members.
Just reading between the lines have you spoken to your medical team about the side effect you are having from the Nivolumab? There may well be alternatives.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi
I am on Nivolumab, just completed cycle 10, and have a series of reactions after each of my treatments. My main reactions are arthritis, can be any random joints or my back, and colitis which gives me bouts of diarrhoea. I am always tried after a treatment and the symptoms can come on at any point between treatments. Like you I always find the settle down after about 4-5days. I often find the first reaction is the worst and as long as my Dr can get it under control it then becomes manageable.
Needless to say this means I now have a large bag of tablets that I can take depending on the reaction I am suffering from. I have had my treatment paused twice to allow the symptoms to settle. The best advice I can give you is to speak to your Dr and let them know what is going on. I am also under the palliative care team and they have been brilliant.
For me it is definitely getting easier with time. The first 8mths were the hardest. Good luck with your treatment 
