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yervoy responders

Forums General Melanoma Community yervoy responders

  • Post
    MelanomaAnkara
    Participant

      Hi, I need positive stories on yervoy. My mom had her first injection two weeks ago and we haven't seen any side effects for now. (Without two days pain in her armpit on seventh and eightht day)

      She has liver metastasis(three, 15mm the biggest) and there is a  two small masses in her armpit. (19 mm,10mm).

      Did yervoy work for you? Please share how and when did it work? Thank you for your concern in advance. My good wishes and prayings are with you. 

    Viewing 8 reply threads
    • Replies
        Julie in SoCal
        Participant

          Hi there.  Positive stories about Yervoy are out there.  It worked for me and a few others on this board.  

          I was able to tolerate all four doses of Ipi, and while I did have side effects (headache, rash, fatigue, GI issues) it was very tolerable.  I didn't have any significant issues until after the 3rd infusion.  And my dr and I was easily able to manage them. I go in for my 1 year (WOW!) scans in a few weeks, and I'm anticipating that I will continue to be No Evidence of Disease (NED).  I'm so grateful!

          What I have heard with Ipi is that it can takes months to work and makes things worse before they get better. This makes evaluating whether or not it is actually working difficult.  It's also important to talk with your Dr about all the side effects your mom has.

          Blessings to you and your mom!

          Julie

          Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI = NERD 

           

           

           

          Julie in SoCal
          Participant

            Hi there.  Positive stories about Yervoy are out there.  It worked for me and a few others on this board.  

            I was able to tolerate all four doses of Ipi, and while I did have side effects (headache, rash, fatigue, GI issues) it was very tolerable.  I didn't have any significant issues until after the 3rd infusion.  And my dr and I was easily able to manage them. I go in for my 1 year (WOW!) scans in a few weeks, and I'm anticipating that I will continue to be No Evidence of Disease (NED).  I'm so grateful!

            What I have heard with Ipi is that it can takes months to work and makes things worse before they get better. This makes evaluating whether or not it is actually working difficult.  It's also important to talk with your Dr about all the side effects your mom has.

            Blessings to you and your mom!

            Julie

            Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI = NERD 

             

             

             

            Julie in SoCal
            Participant

              Hi there.  Positive stories about Yervoy are out there.  It worked for me and a few others on this board.  

              I was able to tolerate all four doses of Ipi, and while I did have side effects (headache, rash, fatigue, GI issues) it was very tolerable.  I didn't have any significant issues until after the 3rd infusion.  And my dr and I was easily able to manage them. I go in for my 1 year (WOW!) scans in a few weeks, and I'm anticipating that I will continue to be No Evidence of Disease (NED).  I'm so grateful!

              What I have heard with Ipi is that it can takes months to work and makes things worse before they get better. This makes evaluating whether or not it is actually working difficult.  It's also important to talk with your Dr about all the side effects your mom has.

              Blessings to you and your mom!

              Julie

              Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI = NERD 

               

               

               

                MelanomaAnkara
                Participant

                  Hi Julie. Thank you very much for your wishes. I hope my mom also can response to Yervoy. She believes she will. Also I.  We have a good doctor and he is also positive about my mom's situation. On seventh day when the pain started in the tumour area in her armpit we went to his office imediately and he said it's normal. A day later pain ceased.

                  Your comments made me hopeful.  Blessings to all of us. Thanks. 

                  MelanomaAnkara
                  Participant

                    Hi Julie. Thank you very much for your wishes. I hope my mom also can response to Yervoy. She believes she will. Also I.  We have a good doctor and he is also positive about my mom's situation. On seventh day when the pain started in the tumour area in her armpit we went to his office imediately and he said it's normal. A day later pain ceased.

                    Your comments made me hopeful.  Blessings to all of us. Thanks. 

                    oranges
                    Participant

                      Hello Mel,

                      Geçmiş olsun.

                      Are you located in Ankara? If so, may i ask who your doctor is? It's been a year since i've been diagnosed and i live in izmir.  Has your mom had the Braf test yet?

                       

                      oranges
                      Participant

                        Hello Mel,

                        Geçmiş olsun.

                        Are you located in Ankara? If so, may i ask who your doctor is? It's been a year since i've been diagnosed and i live in izmir.  Has your mom had the Braf test yet?

                         

                        oranges
                        Participant

                          Hello Mel,

                          Geçmiş olsun.

                          Are you located in Ankara? If so, may i ask who your doctor is? It's been a year since i've been diagnosed and i live in izmir.  Has your mom had the Braf test yet?

                           

                          MelanomaAnkara
                          Participant

                            Hi Julie. Thank you very much for your wishes. I hope my mom also can response to Yervoy. She believes she will. Also I.  We have a good doctor and he is also positive about my mom's situation. On seventh day when the pain started in the tumour area in her armpit we went to his office imediately and he said it's normal. A day later pain ceased.

                            Your comments made me hopeful.  Blessings to all of us. Thanks. 

                          kylez
                          Participant

                            My oncologist believes I had a positive response to Yervoy for at least 2 years. I did not have any real side effects over the 4 cycles of Yervoy (which he knows). Lack of side effects apparently does not mean "no response". There may be some kind of correlation but as far as I know or have been told, any correlation there migh be is nowhere near absolute.

                            Best of luck to your Mom with her treatment. A desirable outcome would be a positive response, combined with very few side effects.

                            – Kyle

                            kylez
                            Participant

                              My oncologist believes I had a positive response to Yervoy for at least 2 years. I did not have any real side effects over the 4 cycles of Yervoy (which he knows). Lack of side effects apparently does not mean "no response". There may be some kind of correlation but as far as I know or have been told, any correlation there migh be is nowhere near absolute.

                              Best of luck to your Mom with her treatment. A desirable outcome would be a positive response, combined with very few side effects.

                              – Kyle

                              kylez
                              Participant

                                My oncologist believes I had a positive response to Yervoy for at least 2 years. I did not have any real side effects over the 4 cycles of Yervoy (which he knows). Lack of side effects apparently does not mean "no response". There may be some kind of correlation but as far as I know or have been told, any correlation there migh be is nowhere near absolute.

                                Best of luck to your Mom with her treatment. A desirable outcome would be a positive response, combined with very few side effects.

                                – Kyle

                                  MelanomaAnkara
                                  Participant

                                    Hi Kyle

                                    Your message made me happy. I hope she will take positive response like you. Thank you for your wishes.

                                    WITom
                                    Participant

                                      I'm a stage 4 ipi responder now 2 yrs NED and 3.5 yrs since I initiated treatment. I had widespread mets including liver and lungs (also axilla lymph nodes).  I was treated with ipi 10 mg (clinical trial) with the 4 initial infusions and 2 additional maintenance infusions. My initial scans (after 1-2 infusions) showed "significant interval improvement". I initially had few side effects with a mild rash and some mild diarrhea. I eventually (after 6th infusion) developed severe colitis which lead to a perforated bowel and I almost died. I survived, recovered and later became NED. I have only been treated with the ipi. So for me the ipi almost killed me but also saved my life and I feel great currently. Do report any side effects especially diarrhea immediately to your moms oncologist. If interested you can see my story on the MIF forum pg. 34. I pray your mom is a responder – when it works, it works really well!    Tom

                                      WITom
                                      Participant

                                        I'm a stage 4 ipi responder now 2 yrs NED and 3.5 yrs since I initiated treatment. I had widespread mets including liver and lungs (also axilla lymph nodes).  I was treated with ipi 10 mg (clinical trial) with the 4 initial infusions and 2 additional maintenance infusions. My initial scans (after 1-2 infusions) showed "significant interval improvement". I initially had few side effects with a mild rash and some mild diarrhea. I eventually (after 6th infusion) developed severe colitis which lead to a perforated bowel and I almost died. I survived, recovered and later became NED. I have only been treated with the ipi. So for me the ipi almost killed me but also saved my life and I feel great currently. Do report any side effects especially diarrhea immediately to your moms oncologist. If interested you can see my story on the MIF forum pg. 34. I pray your mom is a responder – when it works, it works really well!    Tom

                                        WITom
                                        Participant

                                          I'm a stage 4 ipi responder now 2 yrs NED and 3.5 yrs since I initiated treatment. I had widespread mets including liver and lungs (also axilla lymph nodes).  I was treated with ipi 10 mg (clinical trial) with the 4 initial infusions and 2 additional maintenance infusions. My initial scans (after 1-2 infusions) showed "significant interval improvement". I initially had few side effects with a mild rash and some mild diarrhea. I eventually (after 6th infusion) developed severe colitis which lead to a perforated bowel and I almost died. I survived, recovered and later became NED. I have only been treated with the ipi. So for me the ipi almost killed me but also saved my life and I feel great currently. Do report any side effects especially diarrhea immediately to your moms oncologist. If interested you can see my story on the MIF forum pg. 34. I pray your mom is a responder – when it works, it works really well!    Tom

                                          MelanomaAnkara
                                          Participant

                                            Thank you Tom, your story is inspirational and gave us a fresh hope. I showed it to my mother and it made her very happy and strong-willed. I hope one day we can meet after my mother's recovery. I was curious about yervoy works on liver metastasis or not. Thank you. thank you thank you again. 

                                            MelanomaAnkara
                                            Participant

                                              Thank you Tom, your story is inspirational and gave us a fresh hope. I showed it to my mother and it made her very happy and strong-willed. I hope one day we can meet after my mother's recovery. I was curious about yervoy works on liver metastasis or not. Thank you. thank you thank you again. 

                                              MelanomaAnkara
                                              Participant

                                                Thank you Tom, your story is inspirational and gave us a fresh hope. I showed it to my mother and it made her very happy and strong-willed. I hope one day we can meet after my mother's recovery. I was curious about yervoy works on liver metastasis or not. Thank you. thank you thank you again. 

                                                MelanomaAnkara
                                                Participant

                                                  Hi Kyle

                                                  Your message made me happy. I hope she will take positive response like you. Thank you for your wishes.

                                                  MelanomaAnkara
                                                  Participant

                                                    Hi Kyle

                                                    Your message made me happy. I hope she will take positive response like you. Thank you for your wishes.

                                                  Ginger8888
                                                  Participant

                                                    I finished my last dose Aug 13 and the spots in my lungs are gone, still have some show up in my neck, next scans in Dec..It's working so far and just some fatigue but that's might be from the interferon i did before Yervoy..Good luck

                                                    Ginger8888
                                                    Participant

                                                      I finished my last dose Aug 13 and the spots in my lungs are gone, still have some show up in my neck, next scans in Dec..It's working so far and just some fatigue but that's might be from the interferon i did before Yervoy..Good luck

                                                      Ginger8888
                                                      Participant

                                                        I finished my last dose Aug 13 and the spots in my lungs are gone, still have some show up in my neck, next scans in Dec..It's working so far and just some fatigue but that's might be from the interferon i did before Yervoy..Good luck

                                                          MelanomaAnkara
                                                          Participant

                                                            Hi,Thank you for sharing good story on yervoy. I hope all of your spots will disappear again. Thank you Ginger8888. Good luck to all of us. 

                                                            MelanomaAnkara
                                                            Participant

                                                              Hi,Thank you for sharing good story on yervoy. I hope all of your spots will disappear again. Thank you Ginger8888. Good luck to all of us. 

                                                              MelanomaAnkara
                                                              Participant

                                                                Hi,Thank you for sharing good story on yervoy. I hope all of your spots will disappear again. Thank you Ginger8888. Good luck to all of us. 

                                                                Vermont_Donna
                                                                Participant

                                                                  Hi, 

                                                                  I am 3 years 9 months NED after completing 4 infusions of yervoy. I had very few side effects, some fatigue and a slight rash. My melanoma spots on my leg, where my melanoma was located started flattening out and disappearing after the first couple of doses. I has some vitiligio after the first dose, a good sign. I was stage 3a. I am considered a complete responder. you can search previous posts of mine for more details. keep positive!!

                                                                  Vermont_Donna

                                                                  Vermont_Donna
                                                                  Participant

                                                                    Hi, 

                                                                    I am 3 years 9 months NED after completing 4 infusions of yervoy. I had very few side effects, some fatigue and a slight rash. My melanoma spots on my leg, where my melanoma was located started flattening out and disappearing after the first couple of doses. I has some vitiligio after the first dose, a good sign. I was stage 3a. I am considered a complete responder. you can search previous posts of mine for more details. keep positive!!

                                                                    Vermont_Donna

                                                                    MelanomaAnkara
                                                                    Participant

                                                                      Hi Vermont Donna, I read your story before and it gave me a hope. After reading your story now I am looking for vitiligo on my mother's skin. 🙂 I hope we can take positive results like you. I hope you will keep your NED status. Blessings. Thank you very much. 

                                                                      MelanomaAnkara
                                                                      Participant

                                                                        Hi Vermont Donna, I read your story before and it gave me a hope. After reading your story now I am looking for vitiligo on my mother's skin. 🙂 I hope we can take positive results like you. I hope you will keep your NED status. Blessings. Thank you very much. 

                                                                        Marianne quinn
                                                                        Participant

                                                                          My husband developed liver metastasis after completing yervoy induction. Between the diagnosis and the ablation surgery, the metastasis shrunk a little. He hasn't had any new metastasis and is now NED. If she only has a couple of areas, she should see an interventional radiologist to see if she can get rid of those spots. There is a recent retrospective study in the journal of surgical oncology that indicates that melanoma patients with liver metastasis due very well after ablation. We believe that yervoy worked, at least partially. Good luck.

                                                                          Marianne quinn
                                                                          Participant

                                                                            My husband developed liver metastasis after completing yervoy induction. Between the diagnosis and the ablation surgery, the metastasis shrunk a little. He hasn't had any new metastasis and is now NED. If she only has a couple of areas, she should see an interventional radiologist to see if she can get rid of those spots. There is a recent retrospective study in the journal of surgical oncology that indicates that melanoma patients with liver metastasis due very well after ablation. We believe that yervoy worked, at least partially. Good luck.

                                                                            MelanomaAnkara
                                                                            Participant

                                                                              Marianne thank you very much for your reply. We saw a radiologist but she said us that for now we should wait for the result of the yervoy. After fourth infusion maybe they will try "RadioFrequency" ablation.  .I think in Turkey they follow this procedure. I am very happy about your husband's NED status. Thank you. 

                                                                              MelanomaAnkara
                                                                              Participant

                                                                                Marianne thank you very much for your reply. We saw a radiologist but she said us that for now we should wait for the result of the yervoy. After fourth infusion maybe they will try "RadioFrequency" ablation.  .I think in Turkey they follow this procedure. I am very happy about your husband's NED status. Thank you. 

                                                                                MelanomaAnkara
                                                                                Participant

                                                                                  Marianne thank you very much for your reply. We saw a radiologist but she said us that for now we should wait for the result of the yervoy. After fourth infusion maybe they will try "RadioFrequency" ablation.  .I think in Turkey they follow this procedure. I am very happy about your husband's NED status. Thank you. 

                                                                                  Marianne quinn
                                                                                  Participant

                                                                                    My husband developed liver metastasis after completing yervoy induction. Between the diagnosis and the ablation surgery, the metastasis shrunk a little. He hasn't had any new metastasis and is now NED. If she only has a couple of areas, she should see an interventional radiologist to see if she can get rid of those spots. There is a recent retrospective study in the journal of surgical oncology that indicates that melanoma patients with liver metastasis due very well after ablation. We believe that yervoy worked, at least partially. Good luck.

                                                                                    MelanomaAnkara
                                                                                    Participant

                                                                                      Hi Vermont Donna, I read your story before and it gave me a hope. After reading your story now I am looking for vitiligo on my mother's skin. 🙂 I hope we can take positive results like you. I hope you will keep your NED status. Blessings. Thank you very much. 

                                                                                      Vermont_Donna
                                                                                      Participant

                                                                                        Hi, 

                                                                                        I am 3 years 9 months NED after completing 4 infusions of yervoy. I had very few side effects, some fatigue and a slight rash. My melanoma spots on my leg, where my melanoma was located started flattening out and disappearing after the first couple of doses. I has some vitiligio after the first dose, a good sign. I was stage 3a. I am considered a complete responder. you can search previous posts of mine for more details. keep positive!!

                                                                                        Vermont_Donna

                                                                                        Ginger8888
                                                                                        Participant

                                                                                          Thank you, good luck

                                                                                          Ginger8888
                                                                                          Participant

                                                                                            Thank you, good luck

                                                                                            Ginger8888
                                                                                            Participant

                                                                                              Thank you, good luck

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