Sutinitib

Hi and a very warm welcome to the online community

I'm very sorry to hear that you've been diagnosed with kidney cancer which has spread to other parts of your body.

I'm afraid I don't have any experience with sutinitib, as I had a different type of cancer, but I noticed that your post had gone unanswered. By replying to you it will bump your post back to the top of the page where it'll be more easily seen.

I'm also tagging this group's Community Champion buttercup01 into my reply to you as I'm sure she'll be able to give you information and support.

When you have a minute it would be useful if could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thanks @latchbrook

Hello , a second welcome to the community n especially to the kidney cancer group.

Many of us are on Pazopanib, a more recent development in the Sunitinib "family" .

While it's true that there's no cure, it's also true that meds can hold it at bay for years and that new drugs are being developed in the kidney cancer field all the time.

The side effects tend to be cumulative, tho the bright white straight hair is very noticeable - especially if you've had grey naturally curly hair, like me.

I started on Pazopanib in 2013, after having a brain met treated by Cyberknife. I then had a treatment break of 3.5 years before going back on it in Oct 2019. Latest scans in Jan 2020 showed everything had shrunk.

I have a week off every 3 months or so, to combat the taste changes. You are obviously on a different regime to me, having 2 weeks off as a regular thing. Most of us here manage our  own breaks, depending on how we feel.

Most side effects can be dealt with by taking other meds, eg nausea, diarrhoea or pacing  oneself , eg fatigue.

I won't waffle on as other members can probably fill u in other side effects 

There's a whole list of them but not everybody gets everything   - far from it - and it does the job it's meant to. I imagine Sunitinib acts  similarly.

Come back if u want any more info