Desperate need of a melanoma center
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Desperate need of a melanoma center

› Forums › General Melanoma Community › Desperate need of a melanoma center

  • Post
    • May 28, 2013 at 1:48 am
    Tiggerific47
    Participant

      My mom has melanoma.  It started in her nail bed 15 years ago.  She was clean, then 2 yrs ago it showed in her lymph nodes.  Those were removed, she went on a clinical trial of Ipi, but had to stop due to a seizure and then her brain showed two nodules.  They were high dose radiated and gone.  Then it showed in her lung 3 nodules.  As of 6 weeks ago one had just reached 1cm in size so she could go on a clinical trial for anti pd 1, but had to wait a total of eight weeks after having gammaknite radiation of the areas in her brain that keep popping up.

      My mom has melanoma.  It started in her nail bed 15 years ago.  She was clean, then 2 yrs ago it showed in her lymph nodes.  Those were removed, she went on a clinical trial of Ipi, but had to stop due to a seizure and then her brain showed two nodules.  They were high dose radiated and gone.  Then it showed in her lung 3 nodules.  As of 6 weeks ago one had just reached 1cm in size so she could go on a clinical trial for anti pd 1, but had to wait a total of eight weeks after having gammaknite radiation of the areas in her brain that keep popping up.  She went for her scans last week and we found out she has another two in her brain that are soo small, but now she has 3 lesions on her liver that are maybe 1 cm in size.  She wants to get on anti pd 1 badly.  At this time we are being treated at the melanoma center at Yale in Ct.  If she can clean up the tumors in her brain and keep it clean for another eight weeks that would be good, although the only trial that is being offered is a randomized Anti Pd 1 trail with basic chemo.  She wants nothing to do with general chemo.  We are wondering if anyone knows or can suggest and Melanoma centers that we can research and maybe seek treatment.  We are willing to travel and really would like to find a non randomized study.  Any suggestions would be greatful.

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    • Replies
        • May 28, 2013 at 1:59 pm
        jenn84
        Participant

          HI  I am so sorry to hear about your mom.  Unfortunatley I do know what you are going through.  My dad has stage 4 metetastic melanoma.  We had a negative pet scan last time and they told us are previous test the preliminary results were negative.  we got to the doctor office and the results were not negative they found a spot in his left femur.  We are also running out of options.  Ellis Fischel in columbia missouri is a great hospital.  You should deffinatly check into it.  My  dad is on Zelboraf  and it is pill form.  It is 4 pills twice a day but we had to dose reduce and take 3 pills twice a day and since this new cancer came back they are thinking about radiation of the femur an uping the pills to full dose.  My dad also can't take the chemo drugs.  He did a clinicle trial for the implumimab and it just about killed him.  It produced and auto immune response and cause sarcoidosis to flair up and went into his lungs and all over his body.  Best Wishes to you and your mom.  You should check out Ellis Fischel in columbia Missouri and Anderson MD hospital in Texas.  It was rated number 1 in the united states

          • May 28, 2013 at 1:59 pm
          jenn84
          Participant

            HI  I am so sorry to hear about your mom.  Unfortunatley I do know what you are going through.  My dad has stage 4 metetastic melanoma.  We had a negative pet scan last time and they told us are previous test the preliminary results were negative.  we got to the doctor office and the results were not negative they found a spot in his left femur.  We are also running out of options.  Ellis Fischel in columbia missouri is a great hospital.  You should deffinatly check into it.  My  dad is on Zelboraf  and it is pill form.  It is 4 pills twice a day but we had to dose reduce and take 3 pills twice a day and since this new cancer came back they are thinking about radiation of the femur an uping the pills to full dose.  My dad also can't take the chemo drugs.  He did a clinicle trial for the implumimab and it just about killed him.  It produced and auto immune response and cause sarcoidosis to flair up and went into his lungs and all over his body.  Best Wishes to you and your mom.  You should check out Ellis Fischel in columbia Missouri and Anderson MD hospital in Texas.  It was rated number 1 in the united states

            • May 28, 2013 at 1:59 pm
            jenn84
            Participant

              HI  I am so sorry to hear about your mom.  Unfortunatley I do know what you are going through.  My dad has stage 4 metetastic melanoma.  We had a negative pet scan last time and they told us are previous test the preliminary results were negative.  we got to the doctor office and the results were not negative they found a spot in his left femur.  We are also running out of options.  Ellis Fischel in columbia missouri is a great hospital.  You should deffinatly check into it.  My  dad is on Zelboraf  and it is pill form.  It is 4 pills twice a day but we had to dose reduce and take 3 pills twice a day and since this new cancer came back they are thinking about radiation of the femur an uping the pills to full dose.  My dad also can't take the chemo drugs.  He did a clinicle trial for the implumimab and it just about killed him.  It produced and auto immune response and cause sarcoidosis to flair up and went into his lungs and all over his body.  Best Wishes to you and your mom.  You should check out Ellis Fischel in columbia Missouri and Anderson MD hospital in Texas.  It was rated number 1 in the united states

              • May 28, 2013 at 1:59 pm
              jenn84
              Participant

                HI  I am so sorry to hear about your mom.  Unfortunatley I do know what you are going through.  My dad has stage 4 metetastic melanoma.  We had a negative pet scan last time and they told us are previous test the preliminary results were negative.  we got to the doctor office and the results were not negative they found a spot in his left femur.  We are also running out of options.  Ellis Fischel in columbia missouri is a great hospital.  You should deffinatly check into it.  My  dad is on Zelboraf  and it is pill form.  It is 4 pills twice a day but we had to dose reduce and take 3 pills twice a day and since this new cancer came back they are thinking about radiation of the femur an uping the pills to full dose.  My dad also can't take the chemo drugs.  He did a clinicle trial for the implumimab and it just about killed him.  It produced and auto immune response and cause sarcoidosis to flair up and went into his lungs and all over his body.  Best Wishes to you and your mom.  You should check out Ellis Fischel in columbia Missouri and Anderson MD hospital in Texas.  It was rated number 1 in the united states

                • May 28, 2013 at 1:59 pm
                jenn84
                Participant

                  HI  I am so sorry to hear about your mom.  Unfortunatley I do know what you are going through.  My dad has stage 4 metetastic melanoma.  We had a negative pet scan last time and they told us are previous test the preliminary results were negative.  we got to the doctor office and the results were not negative they found a spot in his left femur.  We are also running out of options.  Ellis Fischel in columbia missouri is a great hospital.  You should deffinatly check into it.  My  dad is on Zelboraf  and it is pill form.  It is 4 pills twice a day but we had to dose reduce and take 3 pills twice a day and since this new cancer came back they are thinking about radiation of the femur an uping the pills to full dose.  My dad also can't take the chemo drugs.  He did a clinicle trial for the implumimab and it just about killed him.  It produced and auto immune response and cause sarcoidosis to flair up and went into his lungs and all over his body.  Best Wishes to you and your mom.  You should check out Ellis Fischel in columbia Missouri and Anderson MD hospital in Texas.  It was rated number 1 in the united states

                  • May 28, 2013 at 1:59 pm
                  jenn84
                  Participant

                    HI  I am so sorry to hear about your mom.  Unfortunatley I do know what you are going through.  My dad has stage 4 metetastic melanoma.  We had a negative pet scan last time and they told us are previous test the preliminary results were negative.  we got to the doctor office and the results were not negative they found a spot in his left femur.  We are also running out of options.  Ellis Fischel in columbia missouri is a great hospital.  You should deffinatly check into it.  My  dad is on Zelboraf  and it is pill form.  It is 4 pills twice a day but we had to dose reduce and take 3 pills twice a day and since this new cancer came back they are thinking about radiation of the femur an uping the pills to full dose.  My dad also can't take the chemo drugs.  He did a clinicle trial for the implumimab and it just about killed him.  It produced and auto immune response and cause sarcoidosis to flair up and went into his lungs and all over his body.  Best Wishes to you and your mom.  You should check out Ellis Fischel in columbia Missouri and Anderson MD hospital in Texas.  It was rated number 1 in the united states

                    • May 28, 2013 at 2:01 pm
                    jenn84
                    Participant

                      HI  I am so sorry to hear about your mom.  Unfortunatley I do know what you are going through.  My dad has stage 4 metetastic melanoma.  We had a negative pet scan last time and they told us are previous test the preliminary results were negative.  we got to the doctor office and the results were not negative they found a spot in his left femur.  We are also running out of options.  Ellis Fischel in columbia missouri is a great hospital.  You should deffinatly check into it.  My  dad is on Zelboraf and it is pill form; It is 4 pills twice a day but we had to dose reduce and take 3 pills twice a day and since this new cancer came back they are thinking about radiation of the femur an uping the pills to full dose.  My dad also can't take the chemo drugs.  He did a clinicle trial for the implumimab and it just about killed him.  It produced and auto immune response and cause sarcoidosis to flair up and went into his lungs and all over his body.  Best Wishes to you and your mom.  You should check out Ellis Fischel in columbia Missouri and Anderson MD hospital in Texas.  It was rated number 1 in the united states

                      • May 28, 2013 at 2:01 pm
                      jenn84
                      Participant

                        HI  I am so sorry to hear about your mom.  Unfortunatley I do know what you are going through.  My dad has stage 4 metetastic melanoma.  We had a negative pet scan last time and they told us are previous test the preliminary results were negative.  we got to the doctor office and the results were not negative they found a spot in his left femur.  We are also running out of options.  Ellis Fischel in columbia missouri is a great hospital.  You should deffinatly check into it.  My  dad is on Zelboraf and it is pill form; It is 4 pills twice a day but we had to dose reduce and take 3 pills twice a day and since this new cancer came back they are thinking about radiation of the femur an uping the pills to full dose.  My dad also can't take the chemo drugs.  He did a clinicle trial for the implumimab and it just about killed him.  It produced and auto immune response and cause sarcoidosis to flair up and went into his lungs and all over his body.  Best Wishes to you and your mom.  You should check out Ellis Fischel in columbia Missouri and Anderson MD hospital in Texas.  It was rated number 1 in the united states

                        • May 28, 2013 at 2:01 pm
                        jenn84
                        Participant

                          HI  I am so sorry to hear about your mom.  Unfortunatley I do know what you are going through.  My dad has stage 4 metetastic melanoma.  We had a negative pet scan last time and they told us are previous test the preliminary results were negative.  we got to the doctor office and the results were not negative they found a spot in his left femur.  We are also running out of options.  Ellis Fischel in columbia missouri is a great hospital.  You should deffinatly check into it.  My  dad is on Zelboraf and it is pill form; It is 4 pills twice a day but we had to dose reduce and take 3 pills twice a day and since this new cancer came back they are thinking about radiation of the femur an uping the pills to full dose.  My dad also can't take the chemo drugs.  He did a clinicle trial for the implumimab and it just about killed him.  It produced and auto immune response and cause sarcoidosis to flair up and went into his lungs and all over his body.  Best Wishes to you and your mom.  You should check out Ellis Fischel in columbia Missouri and Anderson MD hospital in Texas.  It was rated number 1 in the united states

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