Kidney Cancer

[debbievero]

I had a radical nephrectomy in november, 2007 (stage 3). Any information that anyone can provide as to what treatments and other information would be helfpul.
I understand that this is a rare type. they just recently found metastacized node in my neck and 2 in region of my surgery. I will have to undergo treatment.
thank you.
Debbie S.

[rscott12345]

Hi,

I also have pRCC subtype II. I had a 3 cm tumor removed from the upper lobe of my left kidney on June 2, 2008. It was stage 1, grade 2 so I was not given any treatment beyond surgery. I have my first 6 month checkup in December. From what I have read, there are not many current treatements for pRCC. Check with NIH for the trials that may be starting. Being in a small minority sux.

Randy

[debbievero]

Randy,
thanks for the reply to my most. Since I posted this message I found out that NIH has been studying Papillary RCC so I went there back in May. I started the XL 880 clinical trial in August and after only 8 weeks my disease was reduced by 50%. I am still on the treatment and hoping to get more shrinkage.

debbie

[rscott12345]

Debbie,

I am glad to hear you are in the trial and seeing major improvements! I think we are lucky to be in the middle of some great strides in treating kidney cancer of all types. And the work being done today will give us even better treatments tomorrow.

Good luck in the future with the trial. I pray you will be one of the people to prove another successful treatment for kidney cancer, and especially papillary subtype II!

Randy

[debbievero]

Randy,
Thanks for the reply. We have our own group at ACOR.org for those of us with Papillary Rcc.
You may want to join us so you can stay on top of latest information. I have learned much from
that online support group. (Papillary Rcc has both an inherited form and a spontaneous form so it's important to keep up to date).
Debbie