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g2zib
g2zib Member Posts: 3
edited April 2019 in Kidney Cancer #1

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  • stub1969
    stub1969 CSN Member Posts: 987 Member
    edited June 2018 #2
    Welcome, g2zib

    Hi, g2.  I'm a fellow chromie, but I didn't travel the same path on the cancer journey as you.  I'll admit, I don't understand the "high grade chromophobe" that you mention.  Can you let us know where you're being treated?  If you haven't done so already, I'd like to direct you to smartpatients.com.  There are a few stage 4 chromophobe RCC fighters there.  You can search the topic or you can join in the conversation.  They will be able to tell you about their treatments and give you some advice about where to go from here.  

    I'd also like you to know that you are your best advocate.  You'll be on a sharp learning curve the first few weeks/months.  Ask and learn so you can make decisions about your care.

    Blessings,

    Stub

  • Positive_Mental_Attitude
    Positive_Mental_Attitude CSN Member Posts: 454
    edited June 2018 #3
    Hi g2, sorry you have to be

    Hi g2, sorry you have to be here, but welcome.  Everything stub said above makes sense.  Read, but verify and definitely do the same with what your doctors tell you.  If possible, get a second opinion. Here and at smartpatients you will get a lot of good advice and shared situations.

  • MarkDavid18
    MarkDavid18 Member Posts: 61
    edited June 2018 #4
    Similar expiration date

    I am very sorry about your situation. I am sure you are trying to process the news. On June 5th I met with my oncologist who told me I had an extremely aggressive grade of cancer - not Chromophobe - but unclassified with sarcomatoid features and I had maybe a year to live. He explained that this cancer would not respond to traditional therapies, however, the newly approved first line treatment of Opdivo and Yervoy (immunotherapy) have shown positive results in patients with poor risk adv RCC to slow and potentially shrink mets. Did your doctor discuss this as an option?

  • APny
    APny CSN Member Posts: 1,995 Member
    #5
    I am so sorry you have to be

    I am so sorry you have to be here. It must have been devastating to be told you 12 months. While I'm not a physician, I don't think anyone, not even an oncologist can predict how long anyone has. Medicine and approaches change rapidly and what seems impossible today may very well be a solution next month. There are people on this forum who were told 10 years ago that they didn't have long, yet here they are. I also agree that you should sign up with Smartpatients. My thoughts are with you!

  • Positive_Mental_Attitude
    Positive_Mental_Attitude CSN Member Posts: 454
    edited June 2018 #6
    APny said:

    I am so sorry you have to be

    I am so sorry you have to be here. It must have been devastating to be told you 12 months. While I'm not a physician, I don't think anyone, not even an oncologist can predict how long anyone has. Medicine and approaches change rapidly and what seems impossible today may very well be a solution next month. There are people on this forum who were told 10 years ago that they didn't have long, yet here they are. I also agree that you should sign up with Smartpatients. My thoughts are with you!

    Hi APny.  Hope you are well. 

    Hi APny.  Hope you are well.  Are you in Florida? I have my 4 year follow up, not with the rock star, but with a nurse practitioner on August 1.  I always look forward to my visit to MSKCC.  A fun and scenic ferry ride to the city, and nice lunch and hopefully good news.

  • lobbyist0724
    lobbyist0724 Member Posts: 516 Member
    #7
    Welcome here but I am sorry

    Welcome here but I am sorry to hear your news. Have your doctor suggested a potential clinical trial. Below is a study targeting Non-Clear Cell RCC and I am sure there are other ones as well. Please check with your doctor. All the best.

    Study of Atezolizumab + Bevacizumab in Patients With Advanced Non-Clear Cell Renal Cell Carcinoma

    https://clinicaltrials.gov/ct2/show/NCT02724878

     

  • Allochka
    Allochka CSN Member Posts: 1,083 Member
    edited June 2018 #8
    Hello,

    Hello,

    please don't give up and get more opinions from oncologists that specialize on RCC. Our Donna here was told about 10 years ago that she has 6 montsh to live. She even has no evidence of disease  (NED) now!

     

    Alla

  • paintergrl
    paintergrl Member Posts: 47
    #9
    possible options

    Where do you live and do you have a RCC specialist to work with? I am also chromophobe, sarcomatoid and recently diagnosed. I do not have as much spread as you as of now, so we aren't in the same situation. Smart Patients is a great place for info, which I know other people have suggested. You should look into the treatment that Mark suggested Opdivo/Yervoy and also clinical trials. I am start a trial on Thursday that is Cabo + Keytruda but it is only in Denver, CO. Sometimes people will travel for drug trials. There was another trial someone suggested. Keep looking for treatment! Thinking of you! 

  • donna_lee
    donna_lee CSN Member Posts: 1,059 Member
    edited June 2018 #10
    Any time a Dr. refers you to a toe tag,

    Ask more questions, get a referal, and ask some more questions.  Twelve years ago, I received a 5-7 month sentence...and here I am today.  I've had several surgeries. no drugs or radiation; but that was before so many new threapies have been developed.  There are so many options out there that you really do need a specialist who has treated Renal Oncology patients.

    What have you got to lose?  Well, you know!

    Hugs in your journey,

    donna_lee

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com CSN Member Posts: 206 Member
    edited June 2018 #11
    So sorry

    About your recent diagnosis.  Medicine is changing everyday new research and drugs to help fight RCC.  I hope one finds its way to you-Best of luck-June

  • APny
    APny CSN Member Posts: 1,995 Member
    #12
    Positive_Mental_Attitude said:

    Hi APny.  Hope you are well. 

    Hi APny.  Hope you are well.  Are you in Florida? I have my 4 year follow up, not with the rock star, but with a nurse practitioner on August 1.  I always look forward to my visit to MSKCC.  A fun and scenic ferry ride to the city, and nice lunch and hopefully good news.

    Hi positive! Hoping for best

    Hi positive! Hoping for best news for you. I haven't seen the rockstar since surgery and hope never to again :)

  • Justinb40y
    Justinb40y Member Posts: 22
    #13
    Affinitor and Lenimva

    Many chromo are stable with this combination.please check on SP

  • CRashster
    CRashster Member Posts: 241 Member
    #14
    No one can tell you how long you have left.

    Don't let them.

  • cheatinlil
    cheatinlil CSN Member Posts: 197 Member
    #15
    g2zib,

    g2zib,

    I'm sorry they told you that.  I would get a second opinion at a facility far far away from that one.  I don't have the answers but I know we have to advocate for ourselves.  Welcome here and keep posting!  Live every day like it is your last.  That is how we should live anyway!  If you live another 30 years but live every day like it is your last what a great life you will have!!

  • Patty R
    Patty R Member Posts: 7
    edited August 2018 #16
    Second Opinion

    Hi g2zib. -- Did you get a second opinion from MD Anderson yet?  Don't accept the death sentence. Chromophobe is so understudied, there would be no way of knowing, especially with the new options occurring everyday.  I would also go online and look for medical trials for Chromophobe.  

  • jas75
    jas75 Member Posts: 11
    edited August 2018 #17
    Another potential resource for Chromophobe

    There is a closed Facebook group, "Chromophobe Kidney Cancer Support Group" where members have been exchanging information on some of the latest developments with this RCC type, including when it has metastasized. Research on treatment options is moving forward all the time and there are members here on CSN who are still with us, long after their physician had initially predicted they had left to live. Please let us know how you are doing.

  • Anjas
    Anjas Member Posts: 7
    edited August 2018 #18
    CRashster said:

    No one can tell you how long you have left.

    Don't let them.

    true
     

    true

     

  • Anjas
    Anjas Member Posts: 7
    edited August 2018 #19
    mu husband has an operation

    mu husband has an operation and lose his kidney with chromophobe in june 2016. He has metastases in his lymphnodes and liver. BUT he is still alive. He had several medicins since then and the true is nothing really helps but so far . when this immunotherapy nivolumab does not work also he gets Cabozantinib. Any one experience with this medicine?

    good luck for all of you

    ps we live in Amsterdam

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #20
    Wow... That's a lot to take

    Wow... That's a lot to take in. I am sorry they told you this news. I would definitely get a second opinion. Not every doctor, surgeon or specialist is the same. I really hope you find the best option for you and your health xo.

  • paintergrl
    paintergrl Member Posts: 47
    #21
    Anjas said:

    mu husband has an operation

    mu husband has an operation and lose his kidney with chromophobe in june 2016. He has metastases in his lymphnodes and liver. BUT he is still alive. He had several medicins since then and the true is nothing really helps but so far . when this immunotherapy nivolumab does not work also he gets Cabozantinib. Any one experience with this medicine?

    good luck for all of you

    ps we live in Amsterdam

    I'm chromophobe with

    I'm chromophobe with sarcomatoid features. I'm taking Cabo (plus keytruda) and had some very good results recently. 37% tumor shrinkage. Lots of people taking Cabo on smart patients. Lots of info there.

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