Has one had this medication called Pazopanib before with kidney cancer or what medication have you guys been on? And how have the side effects been my tumour is about 10cm and it’s within the kidney still, any advise?
Hi welcome to this group. I'm a volunteer community champion.
Many of us in this group are on Pazopanib and have been for some years, eg I started on it in 2013.
Side effects vary between us - the most common are probably
taste changes, which can be dealt with by having a week's break every 3 months
hair changes to bright, white and straight
sore hands and feet. I don't have these ( touchwood) so hope someone else can pitch in re those.
nausea n vomiting - anti sickness meds are usually prescribed. If one doesn't work, you may need to try another and another till you find one that works for you.
diarrhoea - again you can have meds for this
The side effects are a bit of a drag but bearable with and Pazopanib does seem effective, eg I'd a 3.5 year treatment break 2016 to 2019. I went back on it in Oct 2019 n my mets have shrunk in that 3 months.
Are your doctors suggesting u go on Pazopanib rather have your kidney removed? Mine was 9cm and they just removed it. Mind you that was 14.5 years ago....
Other folk in this group are on other meds, eg immunotherapy, often a combo of 2 drugs. I'll let them tell you about their experience.
Hope that's helpful.
Do come back and ask more questions if you want to .We're a friendly bunch and have a lot of experience between us.
Sue
Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Sue Thank you so much for replying means a lot, yes I’ve been told to try medication and see if the tumour shrinks before getting it taken out, but at the moment pain is really bad along with sickness which I’ve been having anti sickness medication.
Not sure weather I want to have my kidney out, had a total hysterectomy 2 years ago. Just getting body back to normal and find out I’ve got cancer in my kidney, was told it was kidney stones for ages. As for pain relief, nothing seems to work at the moment.
I’m trying to stay positive and trying to go to work 3 days a week but that’s even getting hard now.
Yes @kbassan. I started on 800mg/day but couldn't tolerate it so was switched to 600mg (like many others). I've been on 600mg for years. Coincidentally ,I had to have a hysterectomy 3 years after my kidney was removed, so I know what you mean. Having a kidney out is a major op but these days ppl can be up and out of hospital v quickly . See 's posts on the subject.
Don't try to do too much if you're in pain - 3 days/week is quite a lot when you're struggling.
Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Thanks again for reply, what about pain killers any that help you guys more then others?
Going to work keep my mind busy and my mood positive but beginning to get too much now due to pain and sickness, along with feeling exhausted all the time
Fortunately I don't need painkillers, tho I do still get v fatigued, so tend to do things on alternative days, ie pace myself. I know others do that too.
Can u spread your work out like that?
Have u also got anti sickness meds?If not, why not?!
I doubt many folk in the group have been put on meds instead of having surgery,especially if they're in pain n being sick. But ways of dealing with things have changed a lot in 15 years, including the range of drugs being developed all the time.
Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Yes I’ve got anti sickness tablets and I think maybe cause if my age trying to treat it with medication first rather then taking it out. Let’s wait and see what next scans say. thank you so much for all the advise and support. I feel like I’m not alone now
Hi . Sorry you have to find yourself here. I’m on Pazopanib (600mg) and tolerate it reasonably well. It was quite difficult at first but some of the worst side effects settled down. The thing that really gets me down is fatigue but I’m allowed short breaks which seem to help. I has a break at Christmas and I’m still feeling the benefits of it. I hope this helps a bit and that things work out for you. J x
Thank you so much for reply and honestly I felt so alone before joining this group, I felt like I had no one to talk to or no one understood how I’m feeling and fatigue can get you down. Any tips or recommendations would be great?
