Hi everyone - I wanted to ask if anyone one else is on the palliative oral drug Votrient (Pazopanib)? I have low grade fibromyoxiod sarcoma lung mets (I’m 33 years old, I originally had my primary sarcoma in my hip when I was 13 years old). I’ve been on it for 2.5 years and have a number of side effects and wanted to ask what side effects other people have experienced?
Thanks Kim x
I am supposed to start on Pazopanib on Friday, so will update you with side effects as and when they occur. Hoping for minimal side effects of course
4 weeks into Votrient treatment and the only side effect so far is that my facial hair is now completely white... thinking of letting it grow and moonlighting as Santa this Christmas .
Mouth very dry and sore but I think this is mostly due to the morphine rather than the Pazopanib.
So what are you and other finding? Am I 'normal' or do you have lots of side effects?
Hi ZX
Am curious about Votrient - what is it supposed to be doing? Will they scan you again at some point to see what effect it is having and were you told to expect side effects?
I can completely relate to your comment that it is easier to write things than to say things, particularly if you are saying things to people who may feel pain as a result or simply not know how to deal with it... - I just read your profile. A shockingly eventful journey for you I imagine. Still, at least you have a beard. I have hardly a single hair left on my entire body. Luckily it's summer now.
love
flamingo
Hi Flamingo, Votrient is a TKI, targeted drug specifically for kidney cancer and metastases. It basically cuts off the blood supply to the cancers and stops them growing. If it works the cancers should not grow and may even shrink. It is expected that it may last a few months to a couple of years before the cancer becomes immune to it. After that a second TKI may be tried but usually it appears that once it stops working your time is up.
I will have a second scan at 10 weeks to see what effect it is having, then either continue with it or try something else.
The side effects can be pretty bad, as with all Chemotherapy, but so far I have not been hit too badly.
The only real problem I have is that the hospital missed the chance to diagnose it 6 months earlier.. had they done so I might not now be in the position of being barely able to walk, and in constant pain. Morphine helps but facing possibly a number of years of this is not a happy prospect.
Without the Votrient the original prognosis was 3-6 months, but each round of treatment could add 6 months they tell me.
I have read a few of your previous posts and it seems like you are not having a great time either.. I can only hope that it improves and your hair decides to grow back.. as you say completely white hair is still better than none
Thanks ZX - 6 months bonus time per round if it works sounds like a pretty good deal to me. I am glad they are able to offer you a potential lifeline and at least hope. We seem to be living in a time of lots of discoveries and improvements in cancer care. I just hope I am not the last one to die before they find the elusive 'cure'.
I am fortunate in that, chemo aside, my quality of life is good at the moment and I am pain free. My onc. says I will slowly fade away, becoming thinner, weaker and without appetite rather than a catastrophic organ failure. The main problem I have is with the abrupt mental adjustment from being perfectly healthy to 'this'.
I am a member of Dignitas so I have an escape parachute should the going get too tough at some stage. I find this very comforting.
I hope your Votrient does the trick, shrinks the tumours and gives you pain relief at the same time and that you get back to Spain soon.
love
flamingo
Hi all. Don't know if Kim who started this thread still reads but anyhoo..
Over the weekend I started feeling a bit breathless, and it eventually reached the point that I could not get a full breath. Stopped taking the Pazo in case it was a side effect. Phoned hospital about10 pm who told me to come in. Great fun on the 20 mile detour due to road repairs on the M 11.
Turns out to be a chest infection so gonna be in here a couple of days I reckon.
The white beard is definitely coming on well and some even say it suits me lol.
Hey Santa (aka ZXGales)
So sorry to hear about your enforced captivity. Hope you get out soon
Xxx
Sorry to hear another one has arrived in hospital but I expect it is the right place for you to be. Hopefully they sort you out superquick and throw you out again. Better a chest infection than a problematic side effect probably. Get better soon.
I had a santa head for a few days but sadly it all fell out again having only achieved 1 or 2 mm. I am now back to egghead.
love
flamingo
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