Newly diagnosed -Papillary Kidney Cancer

Kwoods
Kwoods Member Posts: 1
edited March 2014 in Kidney Cancer #1
I know someone who was recently diagnosed with Papillary Kidney cancer and they are looking for someone to talk to about it....is there anyone out there with the same diagnosis who willing to talk to them? I posted this in the threads of the 2006 discussion about this, but thought it might get lost...so I am posting here as well.

Comments

  • rscott12345
    rscott12345 Member Posts: 6
    #2
    I have just completed surgery for stage1, grade 2 PRCC.
  • unroxy
    unroxy Member Posts: 7
    #3
    I was diagnosed in Feb. '08 and had a radical nephrectomy in March '08 (rrc/papillary Grade 1). Best website I've found for support is http://cancerguide.org/kofaq/
  • bangormom
    bangormom Member Posts: 58
    #4
    prcc
    Hi,

    I'm here, I'm stage 4 pappilary rcc, I was dx'd in august of this year. I have had my left kidney and adrenal gland removed and they had to clean out my IVC (vena cava). Us pappilary types are a little hard to find. I'll help anyway I can.
  • pooritalianboy
    pooritalianboy Member Posts: 1
    #5
    bangormom said:

    prcc
    Hi,

    I'm here, I'm stage 4 pappilary rcc, I was dx'd in august of this year. I have had my left kidney and adrenal gland removed and they had to clean out my IVC (vena cava). Us pappilary types are a little hard to find. I'll help anyway I can.

    cancer
    My wife has almost the exact same issues. Are you getting treatment. Is it working. Thanks Carl C.
  • ddt
    ddt Member Posts: 10
    #6
    pooritalianboy said:

    cancer
    My wife has almost the exact same issues. Are you getting treatment. Is it working. Thanks Carl C.

    Papillary RCC
    My husband was diagnosed with Stage IV in December of 2008. He has taken Torisel. It didn't work but is working for another gentleman with PRCC in his doctor's office. Then he tried Nexavar. It significantly reduced the ascites he has in the peritonium but didn't help his lungs. So he has just started Sutent. The side effects from the Torisel and Nexavar were manageable. Be sure and get with a doctor who specializes in RCC.
  • dmill
    dmill Member Posts: 1
    #7
    ddt said:

    Papillary RCC
    My husband was diagnosed with Stage IV in December of 2008. He has taken Torisel. It didn't work but is working for another gentleman with PRCC in his doctor's office. Then he tried Nexavar. It significantly reduced the ascites he has in the peritonium but didn't help his lungs. So he has just started Sutent. The side effects from the Torisel and Nexavar were manageable. Be sure and get with a doctor who specializes in RCC.

    Papillary RCC
    My father was told he has stage iv papillary rcc, just last week.. He has already had kidney removed, now we are looking for what to do next. We will seek second opinion at UCSF.. the lack of research and treament for this cancer is unnaceptable. i am very frustrated and would love to hear about what other are experiencing with this disease and treatment.. to everyone out there, HANG IN THERE !! You matter and I am praying for all of you!

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