Hi everyone, I'm new to the forum. I had a radical nephrectomy of the left kidney 11 years ago, was clear from cancer till last year, and now have Mets on my left lung and pancreas. I have been told by my oncologist that there is no cure for my cancer, as it has spread to other areas of my body, and they have prescribed me sutinitib indefinitely. I've read a lot of stories about the effects of sutinitib and l'm wandering what other people's experiences are of using this drug. I have completed one 4 week cycle so far which led to diarrhoea, nausea, metallic taste in mouth, and fatigue. I had the two weeks off, and felt great. Started cycle 2 last week and have, so far not encountered any of the problems I had before, although my beard has literally gone grey overnight.
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
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