Chromophobe kidney cancer and Sunitinib?

Hi Vulpes,

I don't have chromophobe kidney cancer but thought I would reply for two reasons 1) it will bump your question back to the top and someone else may have an answer for you 2) I have papillary rather than clear cell cancer but my experience may give you some hope.

As most testing is done for renal clear cell (RCC) as this is the commonest type it's quite difficult to find results of treatment or personal stories from people with the rarer types. I was offered a choice of either Sunitib or Pazopanib when I was diagnosed, with the choice very much left up to me as they weren't sure either type would work as neither were specifically targeted to papillary. Fortunately, Pazopanib has worked and, four years later, continues to do so. 

I hope someone with a similar diagnosis to you is able to respond and that you are able to get access to the right treatment.

Good luck.

Thank you so much for your reply, it’s hard not to feel completely at sea because as you say, there is so little information. My husband has started taking the Sunitinib, Pazopanib wasn’t offered by our oncologist. So far he has had no side effects, so we are hoping that is a good indication that he will tolerate the medicine well going forward. It is immensely heartening to hear 4 years and meds continuing to work, we are holding onto the hope that we will be as fortunate. Thanks again so much for taking the time to respond.

Morning Vulpes, I hope your husband is continuing to respond well to the sunitinib. I'm sorry that you are having to pay out so much for the treatment yourself.

My Dad has been diagnosed with Chromophobe, also with a 15cm tumour. He hasn't had surgery because it has spread too extensively - but he is going into his third week on the tablets and so far so good. He has ben through it, having had sepsis and over 2 litres of fluid removed from his lung...but feeling hopeful for the first time in months  :)  He seems to much stronger. How is your husband going - has he had any side effects? Thanks. K.