IL2 for chromophobe?

Boleyn-Fitz
Boleyn-Fitz Member Posts: 12
in Kidney Cancer #1

Has anyone been diagnosed with chromophobe RCC and had success with IL2? My pathology is not very clear--I've had three different pathologist look at my primary tumor and recieved three different conclusions (unidentified, clear cell, and now chromophobe). I was planning on doing IL2, but if the chromophobe diagnosis is correct, I'm not sure that it's a good idea.

Comments

  • sblairc
    sblairc Member Posts: 585 Member
    #2
    BUMP

    Hi, just bumping this up in case anyone has any info on this. 

  • NanoSecond
    NanoSecond Member Posts: 653
    #3
    HD-IL2 and the lottery

    I have chromophobe.  When the issue of HD-IL2 came up I decided against it.  The odds of a complete response are extremely low, well beyond the already low odds for clear-cell patients.  Furthermore, if you examine the latest evidence:

    http://www.medicaldaily.com/genome-sequencing-reveals-unique-alterations-telomerase-lead-rare-kidney-cancer-299054

    http://www.cell.com/cancer-cell/abstract/S1535-6108(14)00304-3

    This paper prominently explains that chromophobe RCC has absolutely nothing in common with clear-cell RCC.  In fact it is a completely differnent animal.  Note that the focus is outside of the genome (located in the nucleus of the cell) - and, instead, on the Mitochondria.

    However, it is not know whether or not non-clear cell patients will respond to the new anti-PD1 and anti-PDL1 therapies starting to become available.  But the odds are that they will.

     

  • sblairc
    sblairc Member Posts: 585 Member
    #4
    NanoSecond said:

    HD-IL2 and the lottery

    I have chromophobe.  When the issue of HD-IL2 came up I decided against it.  The odds of a complete response are extremely low, well beyond the already low odds for clear-cell patients.  Furthermore, if you examine the latest evidence:

    http://www.medicaldaily.com/genome-sequencing-reveals-unique-alterations-telomerase-lead-rare-kidney-cancer-299054

    http://www.cell.com/cancer-cell/abstract/S1535-6108(14)00304-3

    This paper prominently explains that chromophobe RCC has absolutely nothing in common with clear-cell RCC.  In fact it is a completely differnent animal.  Note that the focus is outside of the genome (located in the nucleus of the cell) - and, instead, on the Mitochondria.

    However, it is not know whether or not non-clear cell patients will respond to the new anti-PD1 and anti-PDL1 therapies starting to become available.  But the odds are that they will.

     

    Thanks!

    I was hoping you would chime in on the subject.

    For what it is worth (regarding Chromophobe and PD drugs) Dr. Figlin out of Cedars Sinai mentioned in a support group in response to my question about them and chromophobe that they will have more info on how chromophobe responds to those other PD therapies once they get the drugs approved and are available to mass market. Limited clinical trial data, of course, for our chromies but he did say that there was hope. 

  • NanoSecond
    NanoSecond Member Posts: 653
    #5
    sblairc said:

    Thanks!

    I was hoping you would chime in on the subject.

    For what it is worth (regarding Chromophobe and PD drugs) Dr. Figlin out of Cedars Sinai mentioned in a support group in response to my question about them and chromophobe that they will have more info on how chromophobe responds to those other PD therapies once they get the drugs approved and are available to mass market. Limited clinical trial data, of course, for our chromies but he did say that there was hope. 

    Hope for anti-PD1 and anti-PDL1 drugs

    Yes indeed there is reason for lots of hope.  My oncologist (Dr. Hans Hammers at Johns Hopkins) feels very strongly that they should be as effective for us non-clear types as well. 

    Even though the anti-PDL1 drug I took as part of a recent NIH clinical trial failed me he felt it was not indicative of anything other than a poorly designed drug (this trial has not show any spectacular results for anyone else participating).  Note that this was a drug developed by EMD Serono - not one of the two drugs [Nivolumab and Pembrolizumab] creating all the current excitement.

     

  • Boleyn-Fitz
    Boleyn-Fitz Member Posts: 12
    #6
    NanoSecond said:

    HD-IL2 and the lottery

    I have chromophobe.  When the issue of HD-IL2 came up I decided against it.  The odds of a complete response are extremely low, well beyond the already low odds for clear-cell patients.  Furthermore, if you examine the latest evidence:

    http://www.medicaldaily.com/genome-sequencing-reveals-unique-alterations-telomerase-lead-rare-kidney-cancer-299054

    http://www.cell.com/cancer-cell/abstract/S1535-6108(14)00304-3

    This paper prominently explains that chromophobe RCC has absolutely nothing in common with clear-cell RCC.  In fact it is a completely differnent animal.  Note that the focus is outside of the genome (located in the nucleus of the cell) - and, instead, on the Mitochondria.

    However, it is not know whether or not non-clear cell patients will respond to the new anti-PD1 and anti-PDL1 therapies starting to become available.  But the odds are that they will.

     

    Thanks! I was hoping to get

    Thanks! I was hoping to get into a anti-PD1 trial, but the only one that was open was specific to clear cell. I'm somewhat skeptical of the pathologist's report that I am chromophobe, but I guess that's expected after recieving three different diagnoses.

  • sblairc
    sblairc Member Posts: 585 Member
    #7
    Boleyn-Fitz said:

    Thanks! I was hoping to get

    Thanks! I was hoping to get into a anti-PD1 trial, but the only one that was open was specific to clear cell. I'm somewhat skeptical of the pathologist's report that I am chromophobe, but I guess that's expected after recieving three different diagnoses.

    So which diagnosis is true?

    If you get three different ones, how do they determine the correct one for trial purposes? 

  • Boleyn-Fitz
    Boleyn-Fitz Member Posts: 12
    #8
    sblairc said:

    So which diagnosis is true?

    If you get three different ones, how do they determine the correct one for trial purposes? 

    For the purpose of clinical

    For the purpose of clinical trials I'm chromophobe because that was the conclusion of the pathologists at the institution that is performing the trials. After seeing a genetic counselor this week I think that I may have Birt-Hogg-Dube syndrome. That syndrom usually produces chromophobe/oncocytic hybrid tumors, so that might also explain why they pathologists are coming up with different conclusions.

  • todd121
    todd121 Member Posts: 1,448 Member
    #9
    Boleyn-Fitz said:

    Thanks! I was hoping to get

    Thanks! I was hoping to get into a anti-PD1 trial, but the only one that was open was specific to clear cell. I'm somewhat skeptical of the pathologist's report that I am chromophobe, but I guess that's expected after recieving three different diagnoses.

    Trial Rejection

    Occasionally, if you can reach the decision makers sponsoring a trial, they will allow others in and track them separately. I think it's not very common, but I believe I've heard that it's been done.

    If you have a genetic form of kidney cancer, you may want to look into NIH if you can get there. They've been doing a lof of research into genetic types of kidney cancer. I've heard some talks by some of the researchers there, and they really seem to have some good strategies for helping people with genetic types of kidney cancer and they are very interested in studying/following patients with this type of kidney cancer.

    Todd

  • Boleyn-Fitz
    Boleyn-Fitz Member Posts: 12
    #10
    todd121 said:

    Trial Rejection

    Occasionally, if you can reach the decision makers sponsoring a trial, they will allow others in and track them separately. I think it's not very common, but I believe I've heard that it's been done.

    If you have a genetic form of kidney cancer, you may want to look into NIH if you can get there. They've been doing a lof of research into genetic types of kidney cancer. I've heard some talks by some of the researchers there, and they really seem to have some good strategies for helping people with genetic types of kidney cancer and they are very interested in studying/following patients with this type of kidney cancer.

    Todd

    Thanks!

    Thanks!

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