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Help with treatment options
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Help with treatment options

› Forums › General Melanoma Community › Help with treatment options

  • Post
    • June 17, 2012 at 7:40 pm
    MaryEllen
    Participant

       Hi everyone,

       Hi everyone,

      I haven't posted since being diagnosed with Stage IIIC in 2009 – now Stage IV. Currently, I have a positive inginual lymph node and multiple small lung nodules (about 5 – largest 6mm). I have acral lentiginous melanoma. Quick recap: Removal of 3.6 Breslow primary on L heel, positive sentinel node biopsy (no full groin dissection), heel reconstruction 2010, multiple in-transits treated with Oncovex (all gone), inginual node injected with Oncovex (biopsied during Oncovex trial as negative, now biopsied as positive), and now multiple small nodules in both lungs (about 5 of them – largest 6mm). I am BRAF, CKIT negative but am NRAS positive.

      My complication in treating my one inginual node and lung nodules is that I have had multiple sclerosis for 23 years – an autoimmmune disease. My symptoms are extremely mild and far between. I am excluded from IPI and anti-PD1 trials because of the MS. I am being treated at MSKCC in NYC. My doctor and I are considering  IL-2 at Johns Hopkins next month. Of course, IL-2 carries a risk of making auto-immune disease worse too.

      My questions – (1) Are there any promising later stage trials that take advantage of the NRAS mutation; (2) Is there any "wiggle-room" getting into a anti-pd1 trial with a very mild form of autoimmune disease (my neurologist would go to bat for me) and (3) does anyone have any experience with IL-2 and an autoimmune disease.

      If anyone has any thoughts, I would be most appreciative.

      Thanks, MaryEllen

    Viewing 2 reply threads
    • Replies
        • June 17, 2012 at 10:02 pm
        Eileen L
        Participant

          Hi, MaryEllen. So sorry to hear about your progression to Stage IV. I have been Stage IV for over four years and also have a very mild case of MS. I beieve that there are others on this board who are in our situation as well. I am however, BRAF positive, so have gone that route of treatment, first with Sorefenib and now on a BRAF/MEK trial.

          When I was first diagnosed I went to see a doctor in my area who has been very involved with the IPI/Yervoy trials. At the time the sorafenib was still holding me, but I wanted to know if IPI, now called Yervoy, would be an option at some point. He stated he would feel very comfortable trying me on IPI/Yervoy, given how mild my MS has been. Since Yervoy is now FDA approved it is available to you if you can find a physician comfortable in prescribing it given the increased risks to us. 

          I believe there are others on this board who have Stage IV and MS who have tried IL2. If you don't get any responses from them you might repost on Monday morning, since things seem to get more active after the weekend. I am not sure, but I believe that Charlie S, long time contributor here, is one of those people although I might be mistaken.

          I am currently being treated at UCSF and there is a doctor there who is involved in the PD1 trials. He thought it very unlikely that I would ever be admitted into a trial, but thought once the drug was FDA approved it would be a better option for me than Yervoy, since there seems to be less immune related side effects. It may be quite awhile though before PD1 gets that far in the process. 

          Good luck in your quest for your next treatment option. Keep us posted!

          Eileen L

          • June 17, 2012 at 10:02 pm
          Eileen L
          Participant

            Hi, MaryEllen. So sorry to hear about your progression to Stage IV. I have been Stage IV for over four years and also have a very mild case of MS. I beieve that there are others on this board who are in our situation as well. I am however, BRAF positive, so have gone that route of treatment, first with Sorefenib and now on a BRAF/MEK trial.

            When I was first diagnosed I went to see a doctor in my area who has been very involved with the IPI/Yervoy trials. At the time the sorafenib was still holding me, but I wanted to know if IPI, now called Yervoy, would be an option at some point. He stated he would feel very comfortable trying me on IPI/Yervoy, given how mild my MS has been. Since Yervoy is now FDA approved it is available to you if you can find a physician comfortable in prescribing it given the increased risks to us. 

            I believe there are others on this board who have Stage IV and MS who have tried IL2. If you don't get any responses from them you might repost on Monday morning, since things seem to get more active after the weekend. I am not sure, but I believe that Charlie S, long time contributor here, is one of those people although I might be mistaken.

            I am currently being treated at UCSF and there is a doctor there who is involved in the PD1 trials. He thought it very unlikely that I would ever be admitted into a trial, but thought once the drug was FDA approved it would be a better option for me than Yervoy, since there seems to be less immune related side effects. It may be quite awhile though before PD1 gets that far in the process. 

            Good luck in your quest for your next treatment option. Keep us posted!

            Eileen L

            • June 17, 2012 at 10:02 pm
            Eileen L
            Participant

              Hi, MaryEllen. So sorry to hear about your progression to Stage IV. I have been Stage IV for over four years and also have a very mild case of MS. I beieve that there are others on this board who are in our situation as well. I am however, BRAF positive, so have gone that route of treatment, first with Sorefenib and now on a BRAF/MEK trial.

              When I was first diagnosed I went to see a doctor in my area who has been very involved with the IPI/Yervoy trials. At the time the sorafenib was still holding me, but I wanted to know if IPI, now called Yervoy, would be an option at some point. He stated he would feel very comfortable trying me on IPI/Yervoy, given how mild my MS has been. Since Yervoy is now FDA approved it is available to you if you can find a physician comfortable in prescribing it given the increased risks to us. 

              I believe there are others on this board who have Stage IV and MS who have tried IL2. If you don't get any responses from them you might repost on Monday morning, since things seem to get more active after the weekend. I am not sure, but I believe that Charlie S, long time contributor here, is one of those people although I might be mistaken.

              I am currently being treated at UCSF and there is a doctor there who is involved in the PD1 trials. He thought it very unlikely that I would ever be admitted into a trial, but thought once the drug was FDA approved it would be a better option for me than Yervoy, since there seems to be less immune related side effects. It may be quite awhile though before PD1 gets that far in the process. 

              Good luck in your quest for your next treatment option. Keep us posted!

              Eileen L

          Viewing 2 reply threads

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