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YERVOY INFORMATION

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  • Post
    • September 6, 2011 at 12:58 pm
    j.m.l.
    Participant

      Melon. keeps multipyiing. going on Yervoy next week. CAN ANYONE SHARE THEIR EXPER. WITH THIS DRUG, SIDE EFFECTS, DID IT HELP THE CANCER, IF NOT WHAT WAS NEXT STEP. THANK YOU

      Melon. keeps multipyiing. going on Yervoy next week. CAN ANYONE SHARE THEIR EXPER. WITH THIS DRUG, SIDE EFFECTS, DID IT HELP THE CANCER, IF NOT WHAT WAS NEXT STEP. THANK YOU

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    • Replies
        • September 6, 2011 at 1:21 pm
        Gene_S
        Participant

           March 2011 –  I started with the Ipi Clinical Trial with the GM-CSF.  I am receiving the 10mg/kg dosage.  After 12 weeks I received my scans and the good news my disease was overall 39% regression as of May 2011.

          May 2011 am now in the maintenance phase of the clinical trial with the GM-CSF and I am still getting my self injections every 3 weeks that I take 2 weeks and then 1 week off. As before with the Ipi infusion 12 weeks after the last one. 

          August 2011 scans at the end of 24 weeks since I started and an overall regression of 56%.   I get scans in 6 weeks.

          I had the Ipi itch with the rash, a few chills, an occassional headache, a little stiffness in my knees, tenderness and swelling at the GM-CSF sites.  I had some lesions that were visible on the back of my head/neck/scalp area and literally watched them regress to totally flat.  I, after 24 weeks, am getting white eyebrows and beard and losing skin pigmentation in my face.  I am waiting to see an endocrinologist as I am now having a thyroid or pituitary problem.

          Gene and loving wife Judy

            • September 6, 2011 at 1:38 pm
            Lisa13
            Participant

              I just had my second infusion last Thursday and havn't had any side effects from ipi.  I have lung mets, so I can't visably see what's going on which worries me since I'm not having an immune response via side effects.  Everyone is different when it comes to symptoms and responses. Only a small amount of people have a complete response and others partial or no response.   Those who have complete responses have shown remission for 4 years and likely counting as the data is still early.

              If you're BRAF positive, that's the next best option. If you're not, there is always IL-2, TIL treatment or clinical trials.

              • September 6, 2011 at 1:38 pm
              Lisa13
              Participant

                I just had my second infusion last Thursday and havn't had any side effects from ipi.  I have lung mets, so I can't visably see what's going on which worries me since I'm not having an immune response via side effects.  Everyone is different when it comes to symptoms and responses. Only a small amount of people have a complete response and others partial or no response.   Those who have complete responses have shown remission for 4 years and likely counting as the data is still early.

                If you're BRAF positive, that's the next best option. If you're not, there is always IL-2, TIL treatment or clinical trials.

                • September 6, 2011 at 1:41 pm
                Lisa13
                Participant

                  Gene,

                  I think the combo of ipi and GM-CSF is a good pairing.  Infact, if ipi works to keep my disease stable, I would definately look into a trial for this drug.  It's hard to say which one is keeping your melanoma at bay, but whatever it is, it seems to be working.

                  Best of luck.

                  Lisa

                  • September 6, 2011 at 1:41 pm
                  Lisa13
                  Participant

                    Gene,

                    I think the combo of ipi and GM-CSF is a good pairing.  Infact, if ipi works to keep my disease stable, I would definately look into a trial for this drug.  It's hard to say which one is keeping your melanoma at bay, but whatever it is, it seems to be working.

                    Best of luck.

                    Lisa

                  • September 6, 2011 at 1:21 pm
                  Gene_S
                  Participant

                     March 2011 –  I started with the Ipi Clinical Trial with the GM-CSF.  I am receiving the 10mg/kg dosage.  After 12 weeks I received my scans and the good news my disease was overall 39% regression as of May 2011.

                    May 2011 am now in the maintenance phase of the clinical trial with the GM-CSF and I am still getting my self injections every 3 weeks that I take 2 weeks and then 1 week off. As before with the Ipi infusion 12 weeks after the last one. 

                    August 2011 scans at the end of 24 weeks since I started and an overall regression of 56%.   I get scans in 6 weeks.

                    I had the Ipi itch with the rash, a few chills, an occassional headache, a little stiffness in my knees, tenderness and swelling at the GM-CSF sites.  I had some lesions that were visible on the back of my head/neck/scalp area and literally watched them regress to totally flat.  I, after 24 weeks, am getting white eyebrows and beard and losing skin pigmentation in my face.  I am waiting to see an endocrinologist as I am now having a thyroid or pituitary problem.

                    Gene and loving wife Judy

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