CABOZANTINIB?

You must be devastated. This is not my field but it might be good to post this in the lung cancer forum. Best wishes to your poor wife. God bless.

you can look up historical discussions on "cabo".  From the online community home page there's a search bar at the top.  Enter "cabo" (it's abbreviated name) here and you can see all discussions containing cabo.  Or (phones and devices probably different and I'm on a laptop) here's the results.

Hi Ron,

• I am on 'caboz' this is taken as a daily tablet but it has given me the most awful stomach upsets as a side effect.
• I have lost a lot of weight because of this but the cancer has not spread any further as a result and has been a stable disease for the last 7 rounds, which is good news!

Thanks Trez - what constitutes a 'round'? Over what sort of period are you saying? I have read that Caboz is very successful at stopping tumours spreading, which is good news. Val's oncologist told her about the likely side-effects, but what can you do?
Best wishes, Ron

Every 28 days with no break.

Sorry Treza, then a break? If so, how long, or do you have to have continuous treatment?

so important to know when treatment options become available

many thanks, Ron

This is a continuous treatment, but sometimes I come off of it for a few days to settle my stomach if it gets too bad, which I have been told by my consultant that this is ok.

Treza.

Hello Ron

i have been on Cabozantinib since July 21 and lowered my dose from 40mg to 20mg August 22.

My kidney cancer had spread to my liver and Cabo has shrunk my liver lesions slightly but otherwise stable. And stable is good!

side effects have included sore feet (sorted by trip to chiropodist) and diarrhoea (sorted by over the counter medication) and mostly tiredness. But still walking every day and meeting friends.

best wishes 

Gill

Hi Guys

In answer to GIll ABD's kind answer to my request for advice on Cozab, I'm pleased to hear that it's working for you, but at this stage, it's academic because my wife Val's oncologist phoned later and said he had been mistaken in his previous phonecaqll - Ipi/nivo  was indeed working not inactive as he had previously decided. Apparently, Val's scan had gone for review with 'the team' and they decided that it has started to work. So it's back to  Nivo minus the Ipi, starting on Monday.  Half dose, twice a month. 

Val was diagnosed in February and it was shattering news, something everyone on this site will understand first-hand. Her Kidney cancer was assessed as being 'intermediate stage' which we now know is advance stage 3 stroke 4.She didn't expect to last until her 73rd birthday which was in September,. Her oncologist told her there were no guarantees one way or the other, but said there had been great advances in treatment in recent years. Well, September passed and  went, now we're talking about her next scan which is in December. What has been heartening is to hear that Ipi/Nivo is working for people such as Mumm, and we now know that if she has to move to other treatments and Carbo is one of them, there is hope on the horizon.  This site has taught us a lot, thank you to everyone who has been kind enough to reply.

Best Wishes, Ron.

Hi Gill,

I'm glad that over the counter meds work for you but they aren't 'sorted' for everyone, I  have to take the maximum dosage and still get diarrhoea.