Chromophobe - Torisel - Now Everolimus

PK_Chicago
PK_Chicago Member Posts: 58
in Kidney Cancer #1

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   

Comments

  • sblairc
    sblairc Member Posts: 585 Member
    #2
    Let me check my notes

    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
    PK_Chicago Member Posts: 58
    #3
    sblairc said:

    Let me check my notes

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

    Thanks!

    Thanks!

  • sblairc
    sblairc Member Posts: 585 Member
    #4
    Afinitor=Everolimus (same drug) so as not to confuse anyone

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

  • sblairc
    sblairc Member Posts: 585 Member
    #5
    PK_Chicago said:

    Thanks!

    Thanks!

    Here you go. Most recent study. Good news.

    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

  • I am alive
    I am alive Member Posts: 315
    #6
    I'm a chromophobe who used everolimus!

    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
    PK_Chicago Member Posts: 58
    #7
    The OTHER drug!

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

    Heard anything?

    PK

  • angec
    angec Member Posts: 924 Member
    #8
    PK_Chicago said:

    The OTHER drug!

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

    Heard anything?

    PK

    I would give that a shot if

    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
    I am alive Member Posts: 315
    #9
    Nivolumab

    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
    PK_Chicago Member Posts: 58
    #10
    I am alive said:

    Nivolumab

    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. 

    I live in Chicago and am

    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
    sblairc Member Posts: 585 Member
    #11
    Immunotherapy for chromophobe

    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
    Juan Haro Member Posts: 1
    #12
    Started everolimus 7/27/2015

    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
    I am alive Member Posts: 315
    #13
    side effects of everolimus

    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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