Gamma Knife and Yervoy for one Brain Met?
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Gamma Knife and Yervoy for one Brain Met?

› Forums › General Melanoma Community › Gamma Knife and Yervoy for one Brain Met?

  • Post
    • August 2, 2011 at 6:14 pm
    AlanM
    Participant

    I had a brain MRI in April to check for issues that might cause the ear-ringing I am experiencing. They found no inner ear issues but did find one 7mm met on the left frontal lobe. This took from me from 3C(diagnosed June 2010) to stage 4. Subsequent PET/CT scans have shown no other mets. In May I had the brain met zapped with a Gamma knife and that appears now to be stable. My oncologist is recommending Yervoy as a way to finish off the one met that I have and to put the brakes on progression.

    I had a brain MRI in April to check for issues that might cause the ear-ringing I am experiencing. They found no inner ear issues but did find one 7mm met on the left frontal lobe. This took from me from 3C(diagnosed June 2010) to stage 4. Subsequent PET/CT scans have shown no other mets. In May I had the brain met zapped with a Gamma knife and that appears now to be stable. My oncologist is recommending Yervoy as a way to finish off the one met that I have and to put the brakes on progression. Has anyone here used Yervoy in a similar situation?  Given the possibile side-effects of Yervoy, I am weighing the options of only using Yervoy IF something else presents vs using it now and taking the risk of an immune system run amok…. Any thoughts?

    Alan

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  • Replies
      • August 2, 2011 at 6:49 pm
      mombase
      Participant

      Hi Alan,

      I am very new on the board but have a similar situation as you, with the addition of lung tumors. The 1 Cm brain tumor was on my right frontal lobe and was surgically removed last month. I did also have a large benign meningioma close to my brain stem that was removed a year ago. My oncologist recommended whole brain radiation, and I actually have my first appointment with the radiation oncologist this Thursday. I have TONS of questions, the first one being why I cant start with gamma knife instead of whole brain!!

      It sounds like you are doing well…that is fantastic!

      Take care, Cristy

      • August 2, 2011 at 6:49 pm
      mombase
      Participant

      Hi Alan,

      I am very new on the board but have a similar situation as you, with the addition of lung tumors. The 1 Cm brain tumor was on my right frontal lobe and was surgically removed last month. I did also have a large benign meningioma close to my brain stem that was removed a year ago. My oncologist recommended whole brain radiation, and I actually have my first appointment with the radiation oncologist this Thursday. I have TONS of questions, the first one being why I cant start with gamma knife instead of whole brain!!

      It sounds like you are doing well…that is fantastic!

      Take care, Cristy

        • August 2, 2011 at 8:10 pm
        AlanM
        Participant

        Definitely ask about the Gamma Knife option. The whole brain option was on the table for me as well but I never really considered it…..thought it seemed too severe for 1 met.

        Best of luck, Alan 

        • August 2, 2011 at 8:10 pm
        AlanM
        Participant

        Definitely ask about the Gamma Knife option. The whole brain option was on the table for me as well but I never really considered it…..thought it seemed too severe for 1 met.

        Best of luck, Alan 

        • August 2, 2011 at 9:54 pm
        mombase
        Participant

        Thanks, much appreciated!

        • August 2, 2011 at 9:54 pm
        mombase
        Participant

        Thanks, much appreciated!

        • August 2, 2011 at 8:10 pm
        AlanM
        Participant

        Definitely ask about the Gamma Knife option. The whole brain option was on the table for me as well but I never really considered it…..thought it seemed too severe for 1 met.

        Best of luck, Alan 

        • August 2, 2011 at 8:10 pm
        AlanM
        Participant

        Definitely ask about the Gamma Knife option. The whole brain option was on the table for me as well but I never really considered it…..thought it seemed too severe for 1 met.

        Best of luck, Alan 

        • August 2, 2011 at 8:52 pm
        arnie and sherry
        Participant

        yes, my husband had five brain mets, he did gamma knife, 1 month ago.

        • August 2, 2011 at 8:52 pm
        arnie and sherry
        Participant

        yes, my husband had five brain mets, he did gamma knife, 1 month ago.

      • August 2, 2011 at 10:19 pm
      snbsmith
      Participant

      Alan

      I would not advocate waiting.  You are stage 4, and that is a very dangerous place to be.  If you don't believe me check the survival stats.  If you do believe me, don't check the survival stats.  To be a survivor you have to believe that you can be the one in however many beat this disease.  The healthier you are going in, the more options you will have to find the one treatment that will work for you. 

      I was diagnoed in 2006 stage 4 without ever having a primary site.  I did IL-2, then did two clinical trials at NIH.  I came out on the winning side, and have been NED for 2 1/2 years.  I went with aggressive treatments because that is what it takes to win, and I wanted to win.  I had a brain met in between the two clinical trials and did the gamma knife.  I was out riding my bicycle the same day, since compared to other treatments, it was a walk in the park.  I almost did yervoy instead of my second clinical trial, but went with the clinical trial at the suggestion of my oncologists.  Get several  opinions from oncologists experienced in Stage 4 melanoma.  Yervoy may well be your best oprtion, and if you have side effects it is usually a good sign. I understood that most people tolerate it pretty well.   For many of the clinical trials, you need to have IL-2 as a first treatment.  I would make sure that yervoy does not limit your future treatment options.  You need an ocologist that understands clinical trials and can help you plan a strategy.  You can also look at them yourself using one of the links to clinical trials.

      Treat this as a long term commitment, and make plans and back up plans.  It likely won't be an easy road ahead.

      Steve in Northern Virginia

      • August 2, 2011 at 10:19 pm
      snbsmith
      Participant

      Alan

      I would not advocate waiting.  You are stage 4, and that is a very dangerous place to be.  If you don't believe me check the survival stats.  If you do believe me, don't check the survival stats.  To be a survivor you have to believe that you can be the one in however many beat this disease.  The healthier you are going in, the more options you will have to find the one treatment that will work for you. 

      I was diagnoed in 2006 stage 4 without ever having a primary site.  I did IL-2, then did two clinical trials at NIH.  I came out on the winning side, and have been NED for 2 1/2 years.  I went with aggressive treatments because that is what it takes to win, and I wanted to win.  I had a brain met in between the two clinical trials and did the gamma knife.  I was out riding my bicycle the same day, since compared to other treatments, it was a walk in the park.  I almost did yervoy instead of my second clinical trial, but went with the clinical trial at the suggestion of my oncologists.  Get several  opinions from oncologists experienced in Stage 4 melanoma.  Yervoy may well be your best oprtion, and if you have side effects it is usually a good sign. I understood that most people tolerate it pretty well.   For many of the clinical trials, you need to have IL-2 as a first treatment.  I would make sure that yervoy does not limit your future treatment options.  You need an ocologist that understands clinical trials and can help you plan a strategy.  You can also look at them yourself using one of the links to clinical trials.

      Treat this as a long term commitment, and make plans and back up plans.  It likely won't be an easy road ahead.

      Steve in Northern Virginia

        • August 2, 2011 at 10:37 pm
        ValinMtl
        Participant

        I like your oncologist's suggestion to take the upper hand. But as Steve says make certain that that yervoy doesn't limit your clinical options.  I know yervoy did mine for IL-21 (WHICH IS NOT IL-2). 

        I did one round of 4 treatments and one round of 2 treatments (booted off then).  I was a partial responder of yervoy, cleaned up my cutaneous mel.  Maybe a little nausea and diarrhea (immodium was the easy solution).  Just have to be care not to leat the diarrhea get out of control..could result in colitis. Some have rashes, I did not.  I found yervoy relatively easy compared to interferon.  I was given 3 mg each treatment, others are given 10 mg (which could have more serious consequences). Check with  your doctor what dosage he is recommending.   Val

        • August 2, 2011 at 10:37 pm
        ValinMtl
        Participant

        I like your oncologist's suggestion to take the upper hand. But as Steve says make certain that that yervoy doesn't limit your clinical options.  I know yervoy did mine for IL-21 (WHICH IS NOT IL-2). 

        I did one round of 4 treatments and one round of 2 treatments (booted off then).  I was a partial responder of yervoy, cleaned up my cutaneous mel.  Maybe a little nausea and diarrhea (immodium was the easy solution).  Just have to be care not to leat the diarrhea get out of control..could result in colitis. Some have rashes, I did not.  I found yervoy relatively easy compared to interferon.  I was given 3 mg each treatment, others are given 10 mg (which could have more serious consequences). Check with  your doctor what dosage he is recommending.   Val

        • August 3, 2011 at 12:25 am
        AlanM
        Participant

        Thank you…I will check to see what dosage he is prescribing. 

        • August 3, 2011 at 12:25 am
        AlanM
        Participant

        Thank you…I will check to see what dosage he is prescribing. 

        • August 3, 2011 at 12:33 am
        AlanM
        Participant

        Steve, 

        Well said. Up to this point I have been aggressive in treatments. Opted for the neck dissection rather than waiting and monitoring lymph nodes. Also attempted interferon but  due to retinopathy had to stop. Then took short term disability and  spent six weeks in India for Ayurvedic treatments. I guess the next treatment, whatever it is, is just another step on the path.  

        Alan

        • August 3, 2011 at 12:33 am
        AlanM
        Participant

        Steve, 

        Well said. Up to this point I have been aggressive in treatments. Opted for the neck dissection rather than waiting and monitoring lymph nodes. Also attempted interferon but  due to retinopathy had to stop. Then took short term disability and  spent six weeks in India for Ayurvedic treatments. I guess the next treatment, whatever it is, is just another step on the path.  

        Alan

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