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Papillary Renal Cell Carcinoma stage 4 type 2

beckylwhite87
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
Darron
Posts: 310
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.

Janna
Posts: 6
Joined: Aug 2011

I have had both types l and ll of Papillary Renal Cell Kidney Cancer. Starting June of 2011. There were 3 spots. The largest area was taken care of by RFA (RadioFrequencty Ablation. And in June about 2 and a half years later I was diagnoised with Type ll Stage lV.  Total right kidney removal as well as Peri-Sinus fat Bed , Renal Vein and 17 lymph nodes.  Of which 7 were possitive for cancer. No treatments.  Told no cure.  8 % chance of survivial.  3-5 years.  Well, I am in my 7th year.  My surgeon has moved on to Texas.  And because of our ages and the long drive I decided to try a doctor close to home.  All was going well I thought. But, while setting up my 2018 Dr.s appointments I got a shock of my life.  A CT of the Chest and Abdomen was ordered by my Pulmonary Specialist.  It was the reason why it what got me.  It states the tests were ordered due to several polyps in my lungs. At my appointment it was never mention.  And all other appointments during the year no other doctors mentioned it either.  They all got all test results. At this visit I was told that I definitely had COPD.  Because I had never smoked, I was told that it was definetly second hand. I haven't told my family about the Polyps as of yet.  It scares me to death.  No warning each time a new set back  is noted.  My blood work isn't so great either.  Just was told they have no idea as to why the numbers are falling.  I was told back in 2011 that I should go live my life as well as I can for nothing can be done.  I was told not to have normal testing done Like Colonostopies. I have my mother and her mother both had it. There was no way I wasn't going to slack off on this testing.

Anyways what I want to know if any of you have been through anything like this.  I was told by my Urogolist that the path of this cancer will most likely be to the lungs.  So, you can see my concern.  Also has anyone else had the failure of any of their doctors that you had test results not inform you that something new has been seen on your CTS Thanks for any feed back.  Am I jumping the gun as they say or is my concern warranted. Janna

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