Cabozantinib - how long before people start having side effects?

Just an up date. 

I've now managed 600 days.... 

Started out on the 60mg, was not in a good place, 

Progamme of 40 mg.now for over a year

Now taking 21 days with 7 days off, tumours in various places have now been stable for 6 months, as the scan reads 2 now gone (not measurable).

3 are down to half of there original size.

Changed time of pill from night time to afternoons, and now sleep much better. 

Its not been easy, Immodium and E 45 from Amazon have been a life saver. Yes I would advise you get some. 

Yes misss my old kidney

Merry Xmas an stay safe. 

Been taking Cabozantinib for four weeks now. I was previously on Pazopanib for two years and I find the side effects very similar and quite manageable. In between the TKIs I had three courses of immunotherapy which made me extremely tired - and it didn’t even work. I still feel tired but the oncologist isn’t sure whether this is a hangover from immunotherapy or a side effect of Cabozantinib. I’m hopeful it’s the former because it seems to be improving. 

Hi Maybug. 

Following my Operation I was then referred to an Oncologist..

I had the kidney removed on the private following a private Petscan. Not so easy in the UK. 

When I did finally get on to my Oncologist we had long discussion, and it was recommended the cabo pills at 60, mg. But the side effects after 2 maybe 3 the body suffered, you know the problems.

Yes the tiredness comes an goes. 

I take 1day a week  off to recover from the side effects.

It used to be 5 days off 2 days doing something. 

There is a light, at the end of the tunnel, its just a long way off

605 days

Hi Ard2014

I hope your husband is keeping well, I had some good news last week my latest scan shows that my tumours have shrink, so my consultant is going to keep me on this treatment for now, I am lucking only having a few side effects that are bearable, I will be having a scan in April and than my consultant will contact me with results in May so fingers crossed.

Hello

i’ve been on Cabo 40 since last August, after 3 months on Tivozanib. The side affects have been bearable, mainly a sore tongue, occasional diarrhoea (easily manageable so far), but also occasional constipation! The other side affect has been tiredness and dry skin. 
A scan in November showed things were generally stable with some shrinkage. I had a scan on 4 February, but consultant doesn’t to see me until 11 March, which I hope is good. 
I do have to pace myself more, but try to get a 5 mile walk in every couple of days. 

Best wishes to you all and stay safe

Hello Sandra 55. 

So pleased to hear your latest scan shows that your tumours have shrunk. You must be so relieved. Here’s hoping that this response to the treatment continues for you. 

My husband’s latest scan also shows that his tumours have shrunk which we are very pleased about. (His latest MRI scan also showed that there are no more tumours appearing in his brain which is also wonderful)  It’s always such a relief when you discover a treatment is working.

As far as side effects are concerned, my husband’s bowels are quite disrupted but that’s not really a surprise as his pain medication ( morphine and gabapentin) gives him constipation and Cabozantinib is giving him diarrhoea so his bowels don’t know what’s going on! He takes Laxido intermittently to help this, as well as Ondonsetron and Cyclizine for the feelings of nausea that he also gets. He tires easily but that’s not a problem as he spends most of his day lying on a bed because of the effects of the tumour in his sacrum. But the response of the  treatment means that he is now more flexible so he can dress himself without my help ( except for putting his right sock on) and he has even managed to join me on the settee to sit for a cup of coffee. Such a treat! This does stir things up a bit but the discomfort passes when he lies down again. He still cannot stand or walk (with crutches) for very long before the pain starts so I have set him the task of researching mobility scooters. The hope is, if the tumour in his sacrum continues to shrink,  he will be able to sit upright for long enough to get outside and go for a ‘walk’ and his world will open up again. 

Always good to have something to focus on and aim for. 

Take care and thank you for sharing your good news. Long may it last. 

Ard2014

Hi Ard2014

I am so pleased for your husband, we seem to be on the same journey, let’s hope  we enjoy all the extra time we have, I know it is so hard with lockdown, but hopefully your husband will be able to go out with you as soon as we are able.

good luck to you both