Post Torisel - Chromophobe RCC

PK_Chicago
PK_Chicago Member Posts: 58
in Kidney Cancer #1

I was treated with torisel over a year ago and got some radiation on a bone met in my pubic amus in February.  It seems as though things are a bit "active" again based on a CT yesterday. Doc says things are progressing slightly - but slowly (like chromphobe does). I have two questions - does any one have any advice on bone mets (I am getting Zometa every 8-12 weeks) for supplements etc., and has any one heard of new drugs in the pipeline (immunotherapies) that are RCC specific?  My doc tells me he wants to be conservative a scan again in 4 months - he doesn't want me back on Torisel seeing it might negatively effect the immune system.

Comments

  • I am alive
    I am alive Member Posts: 315
    #2
    Another chromophobe

    PK,

     I can't help you with immunotherapy drugs- does your onc say chromophobe responds to them? I believe there might be different views on that. There are very few chromophobes on this and other sites so I'm curious to compare notes, if you don't mind. You have been off Torisel and drug free  for a year?  I've been drug free for 10 months and will be 13 months without drugs when my next CT rolls around. I, too, have small growth in several spots , including a bone met.  How large are your mets? I have one that is 3.5 cm and two in the 2cm range. We are in a wait and watch mode. I've been stage 4 since '08.

  • Srashedb
    Srashedb Member Posts: 482 Member
    #3
    Xgeva

    this drug appears to be more effective than Zometa and kinder to your healthy kidney 

    Sarah

  • Srashedb
    Srashedb Member Posts: 482 Member
    #4
    I am alive said:

    Another chromophobe

    PK,

     I can't help you with immunotherapy drugs- does your onc say chromophobe responds to them? I believe there might be different views on that. There are very few chromophobes on this and other sites so I'm curious to compare notes, if you don't mind. You have been off Torisel and drug free  for a year?  I've been drug free for 10 months and will be 13 months without drugs when my next CT rolls around. I, too, have small growth in several spots , including a bone met.  How large are your mets? I have one that is 3.5 cm and two in the 2cm range. We are in a wait and watch mode. I've been stage 4 since '08.

    Bone met

    I don't think a 3.5 cm met is small; where is it?

    Sarah

  • I am alive
    I am alive Member Posts: 315
    #5
    Srashedb said:

    Xgeva

    this drug appears to be more effective than Zometa and kinder to your healthy kidney 

    Sarah

    3.5cm

    The 3.5 cm met is deep in the groin area. I'm recovering fromheart-related side effects from the drugs I was on previously. Not healthy enuf at the moment to use any other drug. 

  • PK_Chicago
    PK_Chicago Member Posts: 58
    #6
    I am alive said:

    Another chromophobe

    PK,

     I can't help you with immunotherapy drugs- does your onc say chromophobe responds to them? I believe there might be different views on that. There are very few chromophobes on this and other sites so I'm curious to compare notes, if you don't mind. You have been off Torisel and drug free  for a year?  I've been drug free for 10 months and will be 13 months without drugs when my next CT rolls around. I, too, have small growth in several spots , including a bone met.  How large are your mets? I have one that is 3.5 cm and two in the 2cm range. We are in a wait and watch mode. I've been stage 4 since '08.

    Chromophobe

    I had my kidney removed in January 2012 in contained a 14cm tumor (found by accident when getting a CT scan for diverticulitas) - it was classified as chromophobe RCC.  My first post surgery scans (which included my chest for the first time) should a thyroid nodule which resulted in thyroid and nodule removal (thyroid cancer - unrelated).  The next 6 month scan should lessions in my shoulder and pubic ramus.  I went through 6 months of chemo with Torisel - and things seemed to stabilize.  The Torisel started to effect the remaining kidney so we stopped at the end of 2013. Around Christmas of last year - my hip bothered me like a hamstring pull - MRI showed the lesion was pushing on connective tissue.  They radiated it in February.  The scan last week showed that the lession was larger - they figure it was from the radiation. I looked through recent CTs and they refer to things as larger and smaller - not a specific size - 1.89 sticks in my mind related to the pubic area one. My doc tells me there are some new therapies coming in the 3-6 month range which may be a possibility for me.  They initially decided on Torisel because there was data around success with Chromophobe.

     

  • I am alive
    I am alive Member Posts: 315
    #7
    Affinitor is good, too, for chromophobe

    I was in a clinical trial for 22 months specifically for non-clear cell RCC, of which chromophobe is a type. Every day I took a 10mg Affinitor pill and every two weeks I got an infusion of Avastin. It kept everything stable, but I had to get out because I developed proteinuria and some heart toxicity that included fluid around the heart which I experienced with shortness of breath on exertion (could walk miles but would start panting if there was the slightest incline. And stairs, or course, were no fun.) Both the proteinuria and fluid around the heart resolved themselves after I got off the drugs.

    Afinitor and Torisel, I believe, both target the MTor pathway which chromophobes are usually very sensitive to. I recently had a genome profile done which showed typical chromophobe mutations in the PTEN and TP53 genes and my onc told me that Gemzar, a traditional chemo drug, has shown some positive response in people with those mutations. So that's a possible drug choice down the road. Sutant and Votrient are other possible drugs mentioned.

    Has your onc elaborated on the possible new drugs opening up in 3-6 months? Are you in the States?

    Back in '11 we radiated a met on the vertebra and, tho the cancer in it has been shown to still be alive , it has remained stable. I think I told you already that we have xrayed a new now 2 cm met in the shoulder and since it is just "sitting there" without eating into the bone, my onc has decided to do nothing about it. 

  • I am alive
    I am alive Member Posts: 315
    #8
    I am alive said:

    Affinitor is good, too, for chromophobe

    I was in a clinical trial for 22 months specifically for non-clear cell RCC, of which chromophobe is a type. Every day I took a 10mg Affinitor pill and every two weeks I got an infusion of Avastin. It kept everything stable, but I had to get out because I developed proteinuria and some heart toxicity that included fluid around the heart which I experienced with shortness of breath on exertion (could walk miles but would start panting if there was the slightest incline. And stairs, or course, were no fun.) Both the proteinuria and fluid around the heart resolved themselves after I got off the drugs.

    Afinitor and Torisel, I believe, both target the MTor pathway which chromophobes are usually very sensitive to. I recently had a genome profile done which showed typical chromophobe mutations in the PTEN and TP53 genes and my onc told me that Gemzar, a traditional chemo drug, has shown some positive response in people with those mutations. So that's a possible drug choice down the road. Sutant and Votrient are other possible drugs mentioned.

    Has your onc elaborated on the possible new drugs opening up in 3-6 months? Are you in the States?

    Back in '11 we radiated a met on the vertebra and, tho the cancer in it has been shown to still be alive , it has remained stable. I think I told you already that we have xrayed a new now 2 cm met in the shoulder and since it is just "sitting there" without eating into the bone, my onc has decided to do nothing about it. 

    Oh, and......

    I don't think it's unusual for a recently radiated bone met to enlarge after radiation and then decrease a bit in size. Nodes, too, can swell and de-swell (is that a word?) .

    It's amazing, isn't it, that we can live with such crazy uncertainty? I wish I knew I was this strong and Buddha-like back when I was 22.

  • sblairc
    sblairc Member Posts: 585 Member
    #9
    PK_Chicago said:

    Chromophobe

    I had my kidney removed in January 2012 in contained a 14cm tumor (found by accident when getting a CT scan for diverticulitas) - it was classified as chromophobe RCC.  My first post surgery scans (which included my chest for the first time) should a thyroid nodule which resulted in thyroid and nodule removal (thyroid cancer - unrelated).  The next 6 month scan should lessions in my shoulder and pubic ramus.  I went through 6 months of chemo with Torisel - and things seemed to stabilize.  The Torisel started to effect the remaining kidney so we stopped at the end of 2013. Around Christmas of last year - my hip bothered me like a hamstring pull - MRI showed the lesion was pushing on connective tissue.  They radiated it in February.  The scan last week showed that the lession was larger - they figure it was from the radiation. I looked through recent CTs and they refer to things as larger and smaller - not a specific size - 1.89 sticks in my mind related to the pubic area one. My doc tells me there are some new therapies coming in the 3-6 month range which may be a possibility for me.  They initially decided on Torisel because there was data around success with Chromophobe.

     

    PLEASE KEEP US UPDATED on any and all Chromphobe info

    I'd love to here what your doc is talking about. Can you please post about what possible new therapies for Chromophobe your doctor is talking about? 

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