I've been taking Cabozantanib for several months and have always suffered with bad diarrhoea. My dose was lowered, then I tried Imodium and it was still a problem, although a lower dose did help. The last week though it just got too much and I had to stop taking it.
Today I had my monthly chat with the hospital who look after that side of my treatment, and they suggested Codeine. It's odd that it wasn't suggested before, and also odd that in all my research I've never come across that as an option. Now that I search specifically for that, I've found it mentioned in several places along with Imodium.
In the past, I've avoided Codeine for pain as it's always caused me awful constipation. So now I'm scared to take it again! I'm hoping it'll counter the effects of the Cabo but not stop me being able to "go" completely.
I know that many people here have discussed diarrhoea caused by Cabo, including with me in some of my previous posts, but has anyone else tried Codeine and has that been effective without preventing you going to the loo at all?
I've been told not to take Imodium at the same time. They've also told me to take a break from Cabo for a week (I already started that) then start again on 20mg per day, which is the minimum. I had started on 40mg per day and then alternating 40/20mg, all due to the diarrhoea.
It worries me that I'll be on the minimum dose, especially as I haven't been able to have a monthly infusion as part of Immunotherapy because the side-effects were so bad I ended up in hospital for several days.
Geoff.
Hi Geoff
My cancer was different to yours so hope it is ok to reply.
My diarrhoea was treated with codeine phosphate, ondansetron, loperamide and buscopan. It was adding the codeine phosphate that did the trick for me. I had no issues with constipation from it.
For me the codeine phosphate was helpful. When I have taken cocodamol for other reasons, I do find that messes up my tummy for a few days after.
Hope you find something that helps.
Jane
Hi Jane,
Thank you SO much for that Jane, you've answered all my concerns perfectly. I'm just wondering if Codeine is the same as Codeine Phosphate? No need to reply, I'll look it up before you see this. 
Thank you again.
Geoff.
Not sure but I was prescribed codeine phosphate.
I am pretty sure it is prescription only. It does not contain paracetamol like cocodamol does.
The nurses on the Support Line will be able to confirm
