chromophobe kidney cancer
Anne

Narberth, PA

#1 Jul 19, 2012
Hi. I've been living with chromophobe RCC for 8 yrs.....two surgeries, one targeted radiation. But in the last several months two more spots have popped up (teeny at this point & deemed inoperable - the good news is that they are not near vital organs). So my doc sez it's time to seriously consider drug therapy. Anybody out there with a story to tell about side affects, success/failure of the various drugs, what life is like when you are on this medication? How does it affect the quality of your day-to-day life? I've felt terrific throughout this wild ride and bounced back from each surgery & the radiation in record time. So I sense a dramatic change in store for my day-to-day. I'm 60 yrs old and still feel like Peter Pan.
peggyRCC

Redondo Beach, CA

#2 Aug 4, 2012
Anne, give some thought to meeting with an expert in this type of kidney cancer. It is too hard to expect any typical oncologist to have much expertise with kidney cancer, much less with chromophobe. I have a recent lecture from a KCA patient conference in MD Anderson, with Dr. Tannir talking about the rarer subtypes. Lots of information about the targeted therapies from several of the doctors. go to www.peggyRCC.wordpress.com .

I am 63, and was diagnosed 8 years ago with metastatic kidney cancer. Thanks to high dose interleukin 2, then the only FDA approved treatment, I am alive and well
Anne

Narberth, PA

#3 Aug 21, 2012
Thanks for the link to the lecture at MD Anderson. Through that link I found one doctor who spoke soley about recent research into the rare non clear cell kidney cancer, of which chromophobe is a type. It was sobering, yet hope springs eternal. Since contacting you I have begun a clinical trial at Memorial Sloan-Kettering Hospital in NYC that specifically targets non clear cell renal cancer, and I'm grateful for that.(So little targeted drug therapy research is done for the non clear cell types of cancer because only about 20 percent of kidney cancer patients have that - and in the non clear cell subgroup only about 5 percent have chromophobe. So finding a clinical trial tailor-made for my type of cancer is kind of thrilling!). The trial combines two drugs. Every day I take an Afinitor pill (also known as Everolimus). And every two weeks I travel to Manhattan for a 20-minute infusion of Avastin (also known as Bevacizumab). Been on the trial for about a month - two cycles of the Avastin - and I'm feeling great. Side affects are extremely minimal. Won't know if the drug combo is working its magic until a CAT scan down the road a bit, but why not expect the best, right? Congrats on your own eight-year survival! My doc tells me he has patients who have been taking one form of drug therapy or another for 14 years and more, and new drugs are coming out all the time. You just know one day they'll beat this thing. I like the chronic condition analogy, thinking of the situation as "living with" as opposed to waiting to be felled by it. Aren't we amazing creatures to be so hard-wired to keep moving forward? Thanks again for your help, and good luck! I love hearing success stories like yours.
Jan Naples FL

Naples, FL

#4 Apr 17, 2013
any new treatments for chromophobe? i heard sloan kettering has one ending in july but can't find any info on line.
Ertan ERSOY

Çanakkale, Turkey

#5 Aug 27, 2013
Hi Anne..I hope you take this messsage..If ı Dont understand you have chromophobe renall cell corsinoma and you are taking treatment afinitor 10 mg and every two weeks a 20-minute infusion of Avastin ..Can you give more information to me..Also ı have chromophobe renall cell corsinoma stage ıv and bone mets..Thank you..
camille

Henrietta, NY

#6 Jun 17, 2014
hi everyone! I am wondering what your outcomes have been since last post ~ 8ish months ago..my mom was recently dx w/lung and bone mets after being 6 years diease free from chromophobe RCC after intial nephrectomy.

im gathering info on new drugs to go to onc apt w/her and wanted some other peoples advice??
peggyznd

Manhattan Beach, CA

#7 Sep 5, 2014
camille wrote:
hi everyone! I am wondering what your outcomes have been since last post ~ 8ish months ago..my mom was recently dx w/lung and bone mets after being 6 years diease free from chromophobe RCC after intial nephrectomy.
im gathering info on new drugs to go to onc apt w/her and wanted some other peoples advice??
Dear Camille,
I, too, am interested in any of the follow up reports from those with chromophobe or any of the rarer variants. I have the blog which led the above patient to get into a clinical trial, and recommend reading that for some basics and for contact names of expert docs. Go to www.peggyRCC.wordpress.com for education and lectures, some "translated" to be more patient friendly in tone. I also recommend going to www.smartpatients.com , as the name implies, there are lots of educated patients there, very experienced, with good ideas and resources. Best of luck
Jaay

Perth, Australia

#8 Nov 10, 2014
Hi everyone it would be very helpful for us newbies. If everyone who posted here will update us I do I wonder what happen to all of you
Michael

Los Angeles, CA

#11 Sep 5, 2015
My name is Michael, I am 67 years old and I had a nephrectomy on 12/30/14. Post surgery, it was determined that the cancer was Chromophobe, and a C T scan showed that I was "cancer free". Three months later, a follow up scan showed that the cancer had metastasized. I am now enrolled in a clinical trial with interferon alpha2b and MPDL3280a. I am the first person with Chromophobe to be administered MPDL3280a, so whether it is successful or not, at least I will have contributed to the research on this woefully understood cancer. I am wondering if any of you fellow "Chromophobians" have experienced flank pain and/or extreme fatigue? Look forward to having someone continue this vitally important conversation.
matchris7

Australia

#14 Mar 7, 2016
Hi to all Chromophobes. I had a nephrectomy for ? RCC 4.5 months ago. The pathology came back as Chromphobe RCC which I reasearched to be rare and the least likely RCC to spread. After reading these posts I am now a little concerned. My operation pain stopped getting better at 3 months and now left with a hip pain ranging from dull ache to sharp stabbing pain that takes my breath away. I am due CT scans at the 6 month mark which hopefully are clear. Does anyone know any more research on this RCC? Best wishes to all

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