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

ronaldflodin
ronaldflodin Member Posts: 1
in Kidney Cancer #1

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.

Comments

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #2
    The life expectancy

    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
    todd121 Member Posts: 1,448 Member
    #3
    Sarcomatoid RCC

    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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