Cabozantinib side effects - Bad diarrhoea

My wife started on 40 mg of cabozantinib after her immunotherapy caused too many severe side effects. One of her immunotherapy side effects was severe diarrhoea that led to colitis. She suffered severe side effects from cabozantinib and it was paused for ten days then restarted on 20mg. She's had CT scans done which show stable tumours and reduction in her 'mother ship' kidney tumour which has reduced in size while on 20mg. 

Hi Moonbeam, thanks for your reply.

I couldn't think of the name of it when I wrote that post but it was Colitis I had that caused an inflamed bowel and therefore diarrhoea. I had 6 infusions to combat that.

Did your wife find that the diarrhoea stopped once she had been on 20mg Cabozantinib for a while? The results of her scans are quite positive, which is reassuring.

The colitis was a reaction to the immunotherapy.  Since being on cabozantinib she's had a very reduced appetite and mild diarrhoea in bouts. The main point of my previous reply was to offer some positivity about reducing the cabozantinib strength. My wife's 'mothership' reduced quite markedly with 40mg and has reduced further with 20mg.

Okie kokie understood, thank you.

Best wishes to you. 

Hi Moonbeam

Can I ask how long after starting immunotherapy your wife got side effects please?

I am taking Nivimbulab and have had my first  infusion a week ago. I am also on 40mg Cabozantinib daily which I have now taken 6 doses. So far so good apart from headaches.  Perhaps its too early for side effects I dont know.

I have been on Suninitb for 4 months now and get bouts of diahhoeria  I just tough it out and eat less fibrous foods and more cheese which tends to do the trick

My wife was on a twin drug mixture of immunotherapy to start with. It was intended that she have four monthly infusions and then move onto monthly infusions of nivulomab on its own. She had three of the twin drug infusions but then suffered very severe colitis. The treatment was paused while the colitis was treated. Once recovered from that she restarted with nivulomab but after a few months she suffered pneumonitis, which is inflamation of her lungs. She was hospitalised again and treated. Again after the complication was resolved she restarted nivulomab. However after a few more months her body mounted an immune system attack on her liver. That was the final straw as far as nivulomab was concerned and it was ceased. It took almost a year to resolve the liver issue and she had no cancer treatment but the immunotherapy was still working inside her. She then had a CT scan which showed that her kidney tumour, the mother ship I call it, had grown quite alarmingly. She was then put on cabozantinib which has reduced the mother ship back to less than it was when first diagnosed three years ago. She's had some problems and I am infact with her in hospital as I type this. 

She was admitted a couple of days ago with multiple problems, some connected to the cabozantinib and others from other things. Cabozantinib has been paused while her problems are resolved and we expect it to restart in a couple of weeks. She had a break in Cabozantinib previously to address side effects. 

It seems that one can have breaks in the use of the drug if the side effects get too much.

She has metastatic tumours elsewhere in her body but they have remained stable right from first treatment. 

I wish to all the very best. Everyone is different and responds differently to treatment. My wife is recovering from her current setback and we will move on.

I just wanted to post an update and ask for some help too.

So a few weeks ago I started back on taking Cabozantinib along with Imodium every day like my Oncologist suggested. So 40mg and 20mg on alternate days. For around 2 weeks I coped pretty well and the diarrhoea didn't come back, but then a couple of days ago it started again a little bit, then this morning it's absolutely awful. When I saw my Oncologist again 2 days ago I asked a lot about this, and he could not give me any other suggestions of medication to combat the diarrhoea. The only suggestion was peppermint tea, which sounds nasty to me! If it was a cure then sure, I'd give it a try, but it sounds like one of those things that's unlikely to make any real difference.

The doctor also wanted me to go back to taking 40mg of Cabozantinib every day again, although he did say I could stick to alternating between 20mg and 40mg if I wanted. So for the sake of stopping any new cancer appearing, he thinks it's best to take 40mg every day. He also said I could have more Imodium.

So I've started to do that, yet the diarrhoea with morning tells me that the Imodium isn't working. Before starting on the alternating dosage I had stopped taking it all together for a couple of weeks, and I had no problem in that time at all. So I guess it's now built up in my system to the point that things are as bad as they got before. I suspect that even if I went back to the alternating 20/40mg dose, it wouldn't help much.

This isn't living for me. I can't go out, I dare not. I can't travel like I've been desperate to (now that I'm well enough to go out) and enjoy life again. All I can do is stay at home getting bored and more depressed. I may as well give up living if this is all I can do.

Surely there must be SOMEthing I can do to stop this awful diarrhoea? It's been suggested I wear a pad like a nappy, which I'd do if I really thought it would work, despite how much I don't want to. If I got diarrhoea as badly as I did this morning though, even that wouldn't help much. I have no time to get to a toilet, it just happens with barely any warning.

I'll keep taking more Imodium and see how it goes. It's such a shame because at the recent appointment I was told my last CT scan was all clear, a blood clot I had has gone, and no more cancer had appeared. So things seemed positive. This is a real rollercoaster of positive one day, negative the rest, and never knowing what the future holds.

My meds were like that for a while and then swung the other way to constipation, I guess it’s just what they do, keep trying different remedies, never give up you can beat this