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Chromophobe on Nivolumab

Posts: 58
Joined: Mar 2012

Just a quick update - I am a Chromophobe first diagnosed in January of 2012, I went through 28 weekly doses of Torisel that ended in Decmber of 2013.  It kept things pretty stable until January of this year when scans showed "slight activity".  Nivolumab (Opdivo) was suggested as possible path (which I had to apply to get) or Everolimus.  Luckily I was approved Nivolumab and have had three treatments so far (every three weeks).

I am glad to say thus far I have had no side effects - just a dry throat!  I will have two more treatments then a scan to see if there have been any changes.

Are there any Chromophobes out there who have been getting treatment with Nivolumab?  It would be great if we could begin a dialogue here to compare notes!

I will check back in after my scans


PK Chicago

I am alive
Posts: 315
Joined: Jul 2012


You are the first  chromophobe I know of who is on Nivo, so I am excited to see your post. i am a fellow chromophobe. I am not on Nivo, nor have I tried it, but I hope to. There are many other chromophobes who also will be tracking you with baited breath. As you know, chromophobe RCC does not respond to as many of the RCC drugs as clear cell does, so your success on this will be thrilling. Good luck! And yes, definitely keep us posted!


Posts: 2
Joined: Nov 2015

Hello fellow... 

My wife is another Chromophobe mrcc with 50% sarcomatiod transformation  ...  She is indicated  Doxorubcin and Avastin...  We had 3 doses and we will do Pet-ct after two weeks to see the progress...  Please keep us updated how it goes with you


Posts: 4
Joined: Nov 2014

I too have chromophobe stage 4.

Not on Nivo myself, but a few others at my oncologist's office at Seattle Cancer Care Alliance are.

They too have just started. so as more and more chromies get involved with anti PD1 therapies, a pattern will emerge.

Posts: 58
Joined: Mar 2012

On since October - January scans showed "stable" so I am moving forward!  No side effects - 7 doses in!


Posts: 7
Joined: Apr 2018

How are you doing at this moment?

Oliver4's picture
Posts: 4
Joined: May 2018

I was diagnosed with stage 3 chromophobe kidney cancer in November 2017. They removed my right kidney and a 24 cm  x 24 cm tumor x 13 cm diameter. It enveloped my entire abdomen. They successfully removed everything, and now I am under active surveillance. Does anyone have any knowledge of chromophobe kidney cancer?



JerzyGrrl's picture
Posts: 761
Joined: Jun 2016

Chromophobe tends to be one of the slower growing RCCs, so - WOW! - you probably were toting that soccer ball around for a while. Mine was hardball size. Now it's probably time for us to pick up some other sports, dontcha think?

It's one of the less common types, so you're special [OK, before any of you non-chromies get irked because you think I'm saying we chromie-types are special and you aren't... you're special, too, just in a different way].

The above summary isn't even Chromophobe 101, more like Chromophobe 1a [credits not transferable to the state college and university system].

"Active Surveillance" is good when you get it. Definitely! Lots of us are happy to be on that for however long we can. 

Oh, and welcome to the club nobody wants to join (but we're glad you're here all the same).

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