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Chromophobe - Torisel - Now Everolimus

PK_Chicago
Posts: 58
Joined: Mar 2012







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I was just curious if anyone has had experience with Everolimas for Chromophobe RCC.  I was given Torisel alomost two years ago but there is now slight activity in the nephrectomy bed and in the two bone mets I have.  The torisel seemed to do the trick, but my oncologist is suggesting Everolimus for this round.  They are also looking at an immune based therapy that is close to FDA approval (name escapes me).  I am close to four years post surgery and honestly feel great!  Back when I got the Torisel the jury was still out on Everolimus for chromophobes, hence the Torisel – my oncologist tells me there is data around Everolimus now and that it causes les “spikes” in the blood work and is tolerated better.  I really had no side effects from the Torisel.

Just curious if anyone has experience with this.

Thanks

 

PK   

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I've got some notes saved in my gmail on chromophobe treatments. Let me see what I can find and get back to you. 

PK_Chicago
Posts: 58
Joined: Mar 2012

Thanks!

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

http://www.cancertherapyadvisor.com/renal-cell-carcinoma/aspen-study-renal-cell-carcinoma-rcc-sunitinib-everolimus/article/4

 

There is also some older yet very compelling chromophobe information.  I'll get that from gmail in a few. I've linked to the discussion here. RIP Nano, your wisdom lives on helping others. I guess I posted the link initally, but his commentary is important. 

 

http://csn.cancer.org/node/286612

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I hate drugs having two names. Drives me bonkers. Can't get it straight. Just wanted to clarify. 

I am alive
Posts: 316
Joined: Jul 2012

PK

  I was in a trial for 22 months that combined everolimus (10mg pill a day) and Avastin (infusion every other week)I enjoyed stability the whole time and only had to leave the trial because of side effects. On the whole side effects mere minimal during the trial.....until they weren't. Pretty easy ride. There is evidence that chromophobe responds to drugs that target the MTor pathway. Drugs like everolimus. Good luck!

PK_Chicago
Posts: 58
Joined: Mar 2012

The drug they are trying to get for me is Nivolumab. (bristol myers squibb product - Optivo)

Heard anything?

PK

angec's picture
angec
Posts: 923
Joined: Mar 2012

I would give that a shot if you get it off label. It is immune based.  If it works it can be a great treatment, less side affects.  Votrient has worked also, but there are side affects.  Starting at half the dose minmizes it, but docs like to start strong.  Keep us posted. Hugs.

I am alive
Posts: 316
Joined: Jul 2012

PK,

  Just had a talk with this week with my onc about Nivolumab (also known as Opdivo) . He thought it might be good for chromophobes, tho the jury on that is still out. Where do you live? Chicago? new York? I am hoping to move on to that drug in the near future. 

PK_Chicago
Posts: 58
Joined: Mar 2012

I live in Chicago and am being treated at Northwestern.  We'll see if I'm approved - if not I think it will be Everolimus for a time.

 

PK

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I briefly discussed this topic with a well known kidney cancer expert. He gave me an excellent explanation of how clinical trials work and why non-clear cell are excluded. 

His opinion: Immunotherapy may likely work with non-clear cell like chromophobe. Drug companies and scientiets do the clinical trials with the most likely groups of responders to get the drug to market quickly (or at all for that matter since many drugs fail in clinical trials). Hence lack of trials for chromophobe/non-clear cell immunotherapy because conventional thought is that immunotherapy "won't work" on non-clear cell. 

This doctor, however, believed it to be possible and that more data will be available once the immunotherapy drugs get approved. 

 

Juan Haro
Posts: 1
Joined: Aug 2015

Have been on everolimus over two weeks.

Effects:

  • Puss coming out next to finger nails
  • Cancre sores in mouth
  • slight headache
  • Lower energy level
  • loss of appetite

Not all people has the same reaction as I.

 

I am alive
Posts: 316
Joined: Jul 2012

My side effects seemed to come in wAves and then wash over m e - mouth sores were treated and went away in a week or two, fatigue came and went and came again. Likewise headaches, etc. Be careful with edema - if you see your ankles or feet swelling buy some   compression stockings and wear them to keep it controlled. My swelling did become full blown lymphedema.

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