The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

jogo

Forum Replies Created

Viewing 1 reply thread
  • Replies
      jogo
      Participant

        Randomized means you don't choose the treatment, but you do know which group you are in.  Carefully read the protocol you would have to sign before you choose to join the trial. It lists all the possible side effects. That might help your decision.  You can always withdraw from the trial at any time you choose. Good Luck!

        jogo
        Participant

          I also agree with tschmith and Mark_DC.  I started with Dr. Atkins on a clinical trial. When Dr. Gibney came on board at Lombardi I was no longer receiving treatment. I was transferred to him because of his expertise in type the immunotherapy (ipilimumab) I had been receiving.  He is very personable and caring.  The nurse practitioner and clinical trial nurse are also very knowledgeable and caring. I think Dr. Atkins is still monitoring my progress.  It's a great team all around!   Good luck.

          jogo
          Participant

            Think "fire drill".  Ask your doctor questions.before you begin.  What  are the possible IRAEs, Immune Related Adverse Events? How severe can the IRAE get?  How would each possible IRAE be managed?   Who (physician specialist) would be in charge of treatment?  What would be the treatment.?  Would the ipi infusions resume? When?  If not, what happens next?

            In the clinical trials involving ipilimumab, participants had to sign an extensive protocol release.  See if you can read a copy. Start your treatment with a battery of knowledge.  Ipi is effective.  Good luck!

              .  

            jogo
            Participant

              Think "fire drill".  Ask your doctor questions.before you begin.  What  are the possible IRAEs, Immune Related Adverse Events? How severe can the IRAE get?  How would each possible IRAE be managed?   Who (physician specialist) would be in charge of treatment?  What would be the treatment.?  Would the ipi infusions resume? When?  If not, what happens next?

              In the clinical trials involving ipilimumab, participants had to sign an extensive protocol release.  See if you can read a copy. Start your treatment with a battery of knowledge.  Ipi is effective.  Good luck!

                .  

              jogo
              Participant

                July 2013 I began participation in a  stage three clinical trial that is comparing the adjuvant treatment of resected [metastatic] melanoma comparing the use of 10mg/Kg ipilimumab, interferon, and 3mg/Kg ipilimumab   I am in the 3 mg group.  After 2 infusions, I developed a toxic reaction (severe colitis) that started at level 2 and progressed to level 4 toxicity.  All treatment was stopped (and was never resumed). I was hospitalized for twenty-four days in the intermediate intensive care unit.  I received the most excellent care.  My  overactive immune system had to be "shut down"..I received two infusions of infleximab and my colon was "saved."  I did not need any surgery.  I had reactions to the high doses of prednisone that were effectively dealt with.  Everything seems to have been resolved. 

                I am beginning my fourth year n the trial and report every six months.  I am NEAD,  No Evidence of Active Disease.  I have been NEAD since the radical surgery, June 2013, of my left pituitary and sub mandibular [salivary] glands and all the lymph [5] glands on the left side of my neck. I am very grateful be in the trial and have received the two infusions of 3mg ipi. No matter what pain, discomfort, fear, anger I experienced, I would think of my father who died of metastatic malignant melanoma almost twenty-eight years ago.  He is why I entered the trial.

                Good luck!   

                jogo
                Participant

                  July 2013 I began participation in a  stage three clinical trial that is comparing the adjuvant treatment of resected [metastatic] melanoma comparing the use of 10mg/Kg ipilimumab, interferon, and 3mg/Kg ipilimumab   I am in the 3 mg group.  After 2 infusions, I developed a toxic reaction (severe colitis) that started at level 2 and progressed to level 4 toxicity.  All treatment was stopped (and was never resumed). I was hospitalized for twenty-four days in the intermediate intensive care unit.  I received the most excellent care.  My  overactive immune system had to be "shut down"..I received two infusions of infleximab and my colon was "saved."  I did not need any surgery.  I had reactions to the high doses of prednisone that were effectively dealt with.  Everything seems to have been resolved. 

                  I am beginning my fourth year n the trial and report every six months.  I am NEAD,  No Evidence of Active Disease.  I have been NEAD since the radical surgery, June 2013, of my left pituitary and sub mandibular [salivary] glands and all the lymph [5] glands on the left side of my neck. I am very grateful be in the trial and have received the two infusions of 3mg ipi. No matter what pain, discomfort, fear, anger I experienced, I would think of my father who died of metastatic malignant melanoma almost twenty-eight years ago.  He is why I entered the trial.

                  Good luck!   

                  jogo
                  Participant

                    July 2013 I began participation in a  stage three clinical trial that is comparing the adjuvant treatment of resected [metastatic] melanoma comparing the use of 10mg/Kg ipilimumab, interferon, and 3mg/Kg ipilimumab   I am in the 3 mg group.  After 2 infusions, I developed a toxic reaction (severe colitis) that started at level 2 and progressed to level 4 toxicity.  All treatment was stopped (and was never resumed). I was hospitalized for twenty-four days in the intermediate intensive care unit.  I received the most excellent care.  My  overactive immune system had to be "shut down"..I received two infusions of infleximab and my colon was "saved."  I did not need any surgery.  I had reactions to the high doses of prednisone that were effectively dealt with.  Everything seems to have been resolved. 

                    I am beginning my fourth year n the trial and report every six months.  I am NEAD,  No Evidence of Active Disease.  I have been NEAD since the radical surgery, June 2013, of my left pituitary and sub mandibular [salivary] glands and all the lymph [5] glands on the left side of my neck. I am very grateful be in the trial and have received the two infusions of 3mg ipi. No matter what pain, discomfort, fear, anger I experienced, I would think of my father who died of metastatic malignant melanoma almost twenty-eight years ago.  He is why I entered the trial.

                    Good luck!   

                    jogo
                    Participant

                      Congratulations Brian on your ten years.   Thank you for all the support you give us.  I am humbled by your generosity: sharing news about melanoma with us, providing valuable support when there have been questions from persons with melanoma and their families, and sharing your personal journey.  I'm certain that there are hundreds, even thousands, of us who feel that you are in our corner.  Reciprocating, your corner is a stadium of good wishes, gratitude, and prayers for you and your family.  You are our beacon of hope and courage!  

                      jogo
                      Participant

                        Congratulations Brian on your ten years.   Thank you for all the support you give us.  I am humbled by your generosity: sharing news about melanoma with us, providing valuable support when there have been questions from persons with melanoma and their families, and sharing your personal journey.  I'm certain that there are hundreds, even thousands, of us who feel that you are in our corner.  Reciprocating, your corner is a stadium of good wishes, gratitude, and prayers for you and your family.  You are our beacon of hope and courage!  

                        jogo
                        Participant

                          Congratulations Brian on your ten years.   Thank you for all the support you give us.  I am humbled by your generosity: sharing news about melanoma with us, providing valuable support when there have been questions from persons with melanoma and their families, and sharing your personal journey.  I'm certain that there are hundreds, even thousands, of us who feel that you are in our corner.  Reciprocating, your corner is a stadium of good wishes, gratitude, and prayers for you and your family.  You are our beacon of hope and courage!  

                          jogo
                          Participant

                            I am in the same clinical trial, ECOG 1609.  I was also randomized into arm C, 3 mg ipi/Kg.   My infusions were stopped after the second infusion due to 3/4 adverse events:  severe colitis which involved administrating 9 units of blood, adrenal insufficinecy due to the high doses of steriods that were administered, and orthostatic hypotention that had me totally confined to my bed for two weeks.  I was hospitalized for 24 days in the intermediate critical care unit of the hospital. I had two infusions of infleximab to deal with the colitis.  I was on fludrocortosone and prednisone for several months after my discharge from the hospital.  My endocronologist was very diligent about getting me off the steriods and the corticiods.  It took almost a year to do that. My synthroid was increased from 0.050 mg [before the trial] to 0.075 mg. 

                            As part of trial ECOG 1609, I now go for blood work and CT Scans and see the oncologist every 6 months; Once a year, I see the endocronologist, gastroenterologist, oncodermatologist, and the [ENT] head and neck surgeon who performed a total left parotidectomy and radical dissection of the lymph glands on the left side of my neck.  I see my [regular] dermatologist every forth;and eighth month (the oncodermatologist every 12th month). 

                            I am very glad that I am participant in the Ipi vs Interferon Adjuvant trial and that I was randomized into arm C 3 mg ipi/ kg.  I have been NED 28 months since my last infusion.

                            jogo
                            Participant

                              I am in the same clinical trial, ECOG 1609.  I was also randomized into arm C, 3 mg ipi/Kg.   My infusions were stopped after the second infusion due to 3/4 adverse events:  severe colitis which involved administrating 9 units of blood, adrenal insufficinecy due to the high doses of steriods that were administered, and orthostatic hypotention that had me totally confined to my bed for two weeks.  I was hospitalized for 24 days in the intermediate critical care unit of the hospital. I had two infusions of infleximab to deal with the colitis.  I was on fludrocortosone and prednisone for several months after my discharge from the hospital.  My endocronologist was very diligent about getting me off the steriods and the corticiods.  It took almost a year to do that. My synthroid was increased from 0.050 mg [before the trial] to 0.075 mg. 

                              As part of trial ECOG 1609, I now go for blood work and CT Scans and see the oncologist every 6 months; Once a year, I see the endocronologist, gastroenterologist, oncodermatologist, and the [ENT] head and neck surgeon who performed a total left parotidectomy and radical dissection of the lymph glands on the left side of my neck.  I see my [regular] dermatologist every forth;and eighth month (the oncodermatologist every 12th month). 

                              I am very glad that I am participant in the Ipi vs Interferon Adjuvant trial and that I was randomized into arm C 3 mg ipi/ kg.  I have been NED 28 months since my last infusion.

                              jogo
                              Participant

                                I am in the same clinical trial, ECOG 1609.  I was also randomized into arm C, 3 mg ipi/Kg.   My infusions were stopped after the second infusion due to 3/4 adverse events:  severe colitis which involved administrating 9 units of blood, adrenal insufficinecy due to the high doses of steriods that were administered, and orthostatic hypotention that had me totally confined to my bed for two weeks.  I was hospitalized for 24 days in the intermediate critical care unit of the hospital. I had two infusions of infleximab to deal with the colitis.  I was on fludrocortosone and prednisone for several months after my discharge from the hospital.  My endocronologist was very diligent about getting me off the steriods and the corticiods.  It took almost a year to do that. My synthroid was increased from 0.050 mg [before the trial] to 0.075 mg. 

                                As part of trial ECOG 1609, I now go for blood work and CT Scans and see the oncologist every 6 months; Once a year, I see the endocronologist, gastroenterologist, oncodermatologist, and the [ENT] head and neck surgeon who performed a total left parotidectomy and radical dissection of the lymph glands on the left side of my neck.  I see my [regular] dermatologist every forth;and eighth month (the oncodermatologist every 12th month). 

                                I am very glad that I am participant in the Ipi vs Interferon Adjuvant trial and that I was randomized into arm C 3 mg ipi/ kg.  I have been NED 28 months since my last infusion.

                                jogo
                                Participant

                                  I am in the same clinical trial, ECOG 1609.  I was also randomized into arm C, 3 mg ipi/Kg.   My infusions were stopped after the second infusion due to 3/4 adverse events:  severe colitis which involved administrating 9 units of blood, adrenal insufficinecy due to the high doses of steriods that were administered, and orthostatic hypotention that had me totally confined to my bed for two weeks.  I was hospitalized for 24 days in the intermediate critical care unit of the hospital. I had two infusions of infleximab to deal with the colitis.  I was on fludrocortosone and prednisone for several months after my discharge from the hospital.  My endocronologist was very diligent about getting me off the steriods and the corticiods.  It took almost a year to do that. My synthroid was increased from 0.050 mg [before the trial] to 0.075 mg. 

                                  As part of trial ECOG 1609, I now go for blood work and CT Scans and see the oncologist every 6 months; Once a year, I see the endocronologist, gastroenterologist, oncodermatologist, and the [ENT] head and neck surgeon who performed a total left parotidectomy and radical dissection of the lymph glands on the left side of my neck.  I see my [regular] dermatologist every forth;and eighth month (the oncodermatologist every 12th month). 

                                  I am very glad that I am participant in the Ipi vs Interferon Adjuvant trial and that I was randomized into arm C 3 mg ipi/ kg.  I have been NED 28 months since my last infusion.

                                  jogo
                                  Participant

                                    I am in the same clinical trial, ECOG 1609.  I was also randomized into arm C, 3 mg ipi/Kg.   My infusions were stopped after the second infusion due to 3/4 adverse events:  severe colitis which involved administrating 9 units of blood, adrenal insufficinecy due to the high doses of steriods that were administered, and orthostatic hypotention that had me totally confined to my bed for two weeks.  I was hospitalized for 24 days in the intermediate critical care unit of the hospital. I had two infusions of infleximab to deal with the colitis.  I was on fludrocortosone and prednisone for several months after my discharge from the hospital.  My endocronologist was very diligent about getting me off the steriods and the corticiods.  It took almost a year to do that. My synthroid was increased from 0.050 mg [before the trial] to 0.075 mg. 

                                    As part of trial ECOG 1609, I now go for blood work and CT Scans and see the oncologist every 6 months; Once a year, I see the endocronologist, gastroenterologist, oncodermatologist, and the [ENT] head and neck surgeon who performed a total left parotidectomy and radical dissection of the lymph glands on the left side of my neck.  I see my [regular] dermatologist every forth;and eighth month (the oncodermatologist every 12th month). 

                                    I am very glad that I am participant in the Ipi vs Interferon Adjuvant trial and that I was randomized into arm C 3 mg ipi/ kg.  I have been NED 28 months since my last infusion.

                                Viewing 1 reply thread