My partners advanced kidney cancer

Hi Jerry,

Yes, I was on Cabozantinib for eighteen months it did shrink my lungs and kidney cancer, I was on one table daily, I was sable no shrinking for over a year, I know there are a few on this community that are on it and have been for a longer  time than me, I found I didn’t have to many side affects a few mouth ulcers but they did give me mouthwash which cleared that up for me, the only thing I did lose my taste buds that was the worst thing for me, I hope you husband’s finds it ok take care the both of  you  Sandy 

Thank you so much for getting back to me . Did your taste buds return? Just concerned about his appetite.

Here's a thread from 10 months ago where members discussed cabozantinib.  

Thank you ️

Hi Jerry,

 It did return for about two months when I was taken off the medication, but once I was put on a new treatment one month in and it has gone again, I do have a bit of taste if I nibble my food, but once it goes back in my mouth gone again, sometimes I do feel what is the point in eating but I must eat even if I don’t really enjoy it, I hope your husband doesn’t get this side affect especially if he has problems with food already, I hope he gets on well with Cabozantinib as this was all I had as far as affects go, I wish you both good luck and try to have a good Christmas, I am sending hugs and best wishes to you both Sandy xx

Hi Jenny

I have kidney cancer which has spread to my bones but only 4 small spots and I’ve been on Cabo for  7 months . I started on 40 mg with very little side effects , just a bad stomach. I then moved up to the 60mg then found food tasted like metal I had sore feet and  dry skin. I still went to the gym most days and had smaller meals but I was eating more often I also got some quarter zone cream for my feet.

My tumor is on my kidney and has responded well to the medication. I’ve had to scans first one the tumor showed it had got smaller, the second scan  the size stayed the same but the tumor had turned into a mashed state as it dies from the inside out  the dr was pleased how it was working.

I’m 55 years old with a new born baby,I try hard to eat well stay fit and keep pushing forward, I speak to my mates that still treat me the same take the piss out of me and joke that really helps me . I hope this helps you and your husband good luck. Sorry for the poor grammar

Hi Sandra. Sorry for late reply but I had trouble logging on. Thank you so much for getting back to me. We had a good Christmas all things considered. Went to Cornwall for a week at New Year. Just bght mobile scooter for Damian as his mobility is not good. He is doing ok on Cabozantinib so far. Eating well. Just hope it doesn’t change as he is on it longer. Praying hard. Sending you Healing prers and all the best for New Year.

Hi Jerry,

So good to hear you and Damian are getting out, my husband John was thinking about getting me a mobility scooter as my right knees is playing up with my arthritis I am having hydro pool sessions at our local hospital six weeks worth, it does seem to be helping so not sure about scooter as you know they are very expensive, I will keep plodding on I can’t wait until the good weather comes back as I really feel the cold, when I go out you would think I was going to the artic, I am glad Damian is getting on with his treatment I did do very well with it and was sore to have to stop it, the treatment I am on now is targeted not too many side affects sending my best wishes to you both love Sandy xx

Hi Sandra

just to let you know Damian passed away on Monday evening. He had a massive heart attack. At home and died in hospital. His oncologist wouldn’t give death certificate as he can’t be sure the treatment caused it. They are doing an autopsy. I won’t here for about a week or so. What makes it worse is that his GP has told the coroners office that he last saw Damian at a face to face meeting in June last year. That is a blatant lie. Damian last saw a doctor from his GP practice in February last year. Fortunately I logged everything. I will be taking it further. While I have no problem the both hoso itals and treatment his GP surgery were appalling.. I will be taking the matter further. I am heartbroken beyond words. Damian was my whole world. We had no children. We were so close and lived for each other. I wish you all the best with your treatment. Damian was doing so well. He never had heart attack before so waiting to find out why he did. Lots of love

So sad to read your news   I'll be thinking of you as you sort things out :-(  Sending you a Big Hug.