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Papillary Renal Cell Carcinoma stage 4 type 2

Posts: 1
Joined: Sep 2013

My sister, aged 31 was diagnosed with PRCC type 2 stage 4 5 weeks ago, the day before she gave birth to her beautiful baby girl. She was told that the tumour in her kidney is about 8cm and the only other involvment are the lymph nodes. She has recently started sutent which we have read is always very effective. I would love to hear of over people with this type and what treatements you have used and which ones were effective. 

Ive heard good things about treatments in USA, does anyone have experience with these treatments? 


Thank you x

Darron's picture
Posts: 294
Joined: Jun 2013

I am 43, October 2012 radical nephrectomy ion right kidney. I had 2 lung mets, and a 3.4 cm tumor in my remaining adrenal gland. I had the options of IL-2, Nivumab/Sutent trial, or another surgery to remove the adrenal tumor.

i started the Nicolumab-Sutent trial in February. My lung mets are gone, and my adrenal tumor is not measurable (5mm or smaller).

Sutent is often effective for shrinking tumors and keeping them manageable. Once the medication is stopped, most will have their tumors return. Side effects are mostly manageable With Sutent And include:

diarrhea - over the counter drugs, ask your Dr

hand -foot ttenderness- use udder cream

metallic taste on tongue-try neuta sal

sensativity to sun-use sunscreen

Sutent works by keeping your body from forming blood vessels needed by the tumor. Small wounds can be bothersome.

Nivolumab is an immunotherapy drug that takes away a cloaking mechanism that the tumor uses to hide itself from the immune system. It is a drug trial. Side effects have been minimal from the infusions. I am prayerful that it is the drug that has been effective for me. It has the potential to be a durable (lasting) response.


IL-2 (high dose interleukin) is also an immunotherapy that boosts the immune system into fighting the cancer. It is an intense therapy administered during multiple hospital stays. It also has the potential of having a durable response.

I was very generic and brief, but I hope that helps.

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