Bad diarrhoea on Cabozantinib 40mg

Hi

Oooph! It sounds awful. I took a moment to look your drug up and it’s a TKI so unless I am mistaken (has been known) just taking it makes you “extremely vulnerable” to the virus and needing shielding for 12 weeks. Watch out though - could be like me and get the letter three times, once each from government, GP and hospital. Do I shield for 36 weeks? 

I am joking when perhaps I shouldn’t. I think this is my ham fisted way of saying I can see you are on powerful drugs. No I haven’t been on there myself and I can only imagine how very unpleasant all of this is for you. 

I can’t see anything different I would do if I were in your shoes. You’ve spoken to the nurse at the pre-dosing safety check. You rang the helpline. What else is there left to you?

I think your resolve to be very clear just how badly this is affecting you and to let them know you can’t cope is really what you have to do now. I have found in the past in situations like this for the diary where I’ve detailed events and side-effects has been very helpful. Doctors are used to taking a lot of written information at a glance and once they can see the pattern of what’s going on they tend to be much more responsive. But if you can’t even see an oncologist then you’re scuppered. 

I obviously can’t give medical advice but I do wonder - did your oncologist mention future dose reduction in the letters to the GP? 

I have been lucky enough to have had excellent care. My oncologists have always been proactive, an attitude that’s filtered down to their juniors. They have consistently told me through 9 different types of treatment: get on top before the side effects get on top of you. If I can predict I’ll get diarrhoea then take loperamide first and take up to the max. Same with nausea and pain. 

I am so sorry you’re treatment is making you so sick. It’s always a balance between benefit and harm and it sounds like the balance is wrong. 

xxx

Hi Daloni,

thanks for your reply, yes I have gone through everything with my oncologist but unfortunately she isn’t poorly but her colleague who i am seeing knows to she’s working from home due to this virus, the nurses did they would speak to her so hopefully I will know more when I go back on 20th May. They did give me a few breaks to help which I said good but I find that it’s makes side effects bad once I restart. Lopromide is working to a point then I explode sorry to be graphic. Yea before this drug I was on another TKI Pazopanib but managed on that. So it’s a coping game until go go back for bloods and check. 

I hope you are keeping well with everything that is going on, it’s a strange, scary time having cancer even without this extra virus.

stay safe guys

xxx

Hi

Poor you. It’s the pits and even talking or writing about it is uncomfortable. 

If you don’t mind my saying, it sounds like you’ve done what you can for now and the only thing left under your influence is taking care of your poor sore (presumably?) bum. Grandmothers and eggs not withstanding, warm water is better than toilet paper and some barrier cream might help. Try to stay as comfy as you can. 

Yes I’m doing ok. I’m in hospital just waiting for the duty doc to finish my paperwork and I can go! Glory hallelujah! Home and start to get myself up and ready for chemo. Oh joy! It will be my fourth time. 

xx