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Three in one chance, what to do
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Three in one chance, what to do

› Forums › General Melanoma Community › Three in one chance, what to do

  • Post
    • April 25, 2012 at 2:31 am
    Karin L
    Participant

      One year after beginning HD IL2 the PET/CT showed all soft tissue disease resolved (numerous tumors in the groin lymph nodes and many in liver ) and all bone mets resolved.  Only issue was L5 area in spine.  Followed up with MRI of lumbar spine and it did show mel as well as a soft tissue mass close by encroaching on a nerve. 

      One year after beginning HD IL2 the PET/CT showed all soft tissue disease resolved (numerous tumors in the groin lymph nodes and many in liver ) and all bone mets resolved.  Only issue was L5 area in spine.  Followed up with MRI of lumbar spine and it did show mel as well as a soft tissue mass close by encroaching on a nerve. 

      I developed severe neuropathy ( believed to be a side affect from the IL2 treatment) in January.  It got progressively worse as time went on to not only affecting both hands and feet but I had numbness everywhere including my lips/teeth/ears…etc.  I couldn't feel my feet or hands whatsoever.  Treated with high dose steriods and tapered off for 15 days.  This was in mid March.  You could draw a line from my lower back down to my ankle with severe pain (not tolerable) right before beginning treatment….which was the nerve.  The steriod treatment helped immensely but the pain is still there (tolerable)  as well as some numbness in that leg only at this point.  This treatment was from my neurologist after various tests and consult with my oncologist.    Now we know that particular pain/nerve/lower back pain is from the mel.  Both were going on at the same time.

      Met with my onc. yesterday for follow-up after the MRI.  My choices were 1. watch and wait with MRI in 8wks to see if my immune system will resolve this issue since it took care of everything else.  2. Radiation.  One in three chance it will either relieve the pain, relieve the pain and resolve the tumor, or do nothing.  3. Surgery which would be abdominal due to the location and while not risky, not without much recovery and chance of damaging the nerve. 

      Meh.  At this point I chose to watch and wait.  Other than the pain which is a little above annoying and is relieved with low dose pain meds I feel great and I am told I look great.  Dr. feels why take chances if what is going on may actually be healing. 

      Am I crazy?  I agree with make your decision and don't look back but if anyone has anything they would like to say PLEASE do so.  Many times the thought process kicks into a higher gear with others thoughts.  Are we missing something? 

      This is crazy long so if you read it, thank you.  If you reply, even bigger thanks!

      Karin 

    Viewing 2 reply threads
    • Replies
        • April 25, 2012 at 11:50 am
        jim Breitfeller
        Participant

          Karin, you may want to look into XL184 therapy.

          Cabozantinib (XL184)

          Cabozantinib, formerly known as XL184, is a potent dual inhibitor of the MET and VEGF pathways designed to block MET driven tumor escape. In multiple preclinical studies cabozantinib has been shown to kill tumor cells, reduce metastases, and inhibit angiogenesis (the formation of new blood vessels necessary to support tumor growth). 

          To date, we have observed objective responses in 12 of 13 tumor types studied and observed activity against metastatic bone lesions in five tumor types, including prostate, renal, breast, thyroid, and melanoma .

          http://www.exelixis.com/cabozantinib 

           

          Best regards,

          Jimmy B

            • April 25, 2012 at 4:35 pm
            Karin L
            Participant

              Thank you Jimmy B.  (I don't think you have a clue how valuable you are here to so so so many of us.) 

              I remember in the far back of my mind  reading that before….I checked out all the trials and I didn't find any, that I would be eligible for, recruiting.  I will mention this next visit : ). 

              As far as radiation, is there any benefit to Proton therapy for mel?  I am lucky enough to live near a center that specializes in Proton therapy.   Anyone know?

              Karin

                 

              • April 25, 2012 at 4:35 pm
              Karin L
              Participant

                Thank you Jimmy B.  (I don't think you have a clue how valuable you are here to so so so many of us.) 

                I remember in the far back of my mind  reading that before….I checked out all the trials and I didn't find any, that I would be eligible for, recruiting.  I will mention this next visit : ). 

                As far as radiation, is there any benefit to Proton therapy for mel?  I am lucky enough to live near a center that specializes in Proton therapy.   Anyone know?

                Karin

                   

                • April 25, 2012 at 4:35 pm
                Karin L
                Participant

                  Thank you Jimmy B.  (I don't think you have a clue how valuable you are here to so so so many of us.) 

                  I remember in the far back of my mind  reading that before….I checked out all the trials and I didn't find any, that I would be eligible for, recruiting.  I will mention this next visit : ). 

                  As far as radiation, is there any benefit to Proton therapy for mel?  I am lucky enough to live near a center that specializes in Proton therapy.   Anyone know?

                  Karin

                     

                • April 25, 2012 at 11:50 am
                jim Breitfeller
                Participant

                  Karin, you may want to look into XL184 therapy.

                  Cabozantinib (XL184)

                  Cabozantinib, formerly known as XL184, is a potent dual inhibitor of the MET and VEGF pathways designed to block MET driven tumor escape. In multiple preclinical studies cabozantinib has been shown to kill tumor cells, reduce metastases, and inhibit angiogenesis (the formation of new blood vessels necessary to support tumor growth). 

                  To date, we have observed objective responses in 12 of 13 tumor types studied and observed activity against metastatic bone lesions in five tumor types, including prostate, renal, breast, thyroid, and melanoma .

                  http://www.exelixis.com/cabozantinib 

                   

                  Best regards,

                  Jimmy B

                  • April 25, 2012 at 11:50 am
                  jim Breitfeller
                  Participant

                    Karin, you may want to look into XL184 therapy.

                    Cabozantinib (XL184)

                    Cabozantinib, formerly known as XL184, is a potent dual inhibitor of the MET and VEGF pathways designed to block MET driven tumor escape. In multiple preclinical studies cabozantinib has been shown to kill tumor cells, reduce metastases, and inhibit angiogenesis (the formation of new blood vessels necessary to support tumor growth). 

                    To date, we have observed objective responses in 12 of 13 tumor types studied and observed activity against metastatic bone lesions in five tumor types, including prostate, renal, breast, thyroid, and melanoma .

                    http://www.exelixis.com/cabozantinib 

                     

                    Best regards,

                    Jimmy B

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