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I have been diagnosed with saromatoid renal cell carcinoma mastaside - looking for new treatments

ronaldflodin
Posts: 1
Joined: Apr 2016

I was diagnosed 1.5 years ago and given 3 to 6 months to live and I am still here. I started with sutent and that worked well and then stopped. I am now going on drug treatment called gemcitabine. This may be the last treatment for me according to the VA, I am looking outside the box. I am looking for any research opportunites to apply for. Any advice would be greatly appreciated, I look forwarding to hearing some advise.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

sounds wrong.

You will get a lot a lot of support on this site. But for the specific questions yo're asking you might be better off going to Smartpatients; an excellent supportive and far more medically informed site

 

Good luck anyway

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Most of us have clear cell. I suppose your type is more rare. I'm not sure many of us have information your subtype. Hopefully someone that does will pipe up.

I did a quick google and see there are studies using the drug you mentioned. Is that a drug study you are in?

Can you go outside the VA for a second opinion? It sounds like they are probably on the ball, but still might want to get a second opinion from an RCC medical oncologist outside the VA if you can. The VA may even have a program to let you do this and they pay for it. Just a consult may not be that expensive even if you have to pay for it out of pocket.

Regards,

Todd

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