Considering Yervoy
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Considering Yervoy

› Forums › General Melanoma Community › Considering Yervoy

  • Post
    • October 1, 2011 at 4:01 am
    Beckyinsandiego
    Participant

      My original melanoma was back in 1999 and since then I have had 4 recurrences. I am Stage IV and have activity in my sternum. My doctor wants to put me on Ipi and I was hoping to hear from fellow melanoma warriors out there about their experience with Ipi. I would like to hear success stories of course but I know that it does not work for everyone. Please share your story with me if you can. I know I am going to beat this disease like I always do. Keep positive because it is over 1/2 the battle.

      Take Care of Yourselves

      Becky from San Diego

      My original melanoma was back in 1999 and since then I have had 4 recurrences. I am Stage IV and have activity in my sternum. My doctor wants to put me on Ipi and I was hoping to hear from fellow melanoma warriors out there about their experience with Ipi. I would like to hear success stories of course but I know that it does not work for everyone. Please share your story with me if you can. I know I am going to beat this disease like I always do. Keep positive because it is over 1/2 the battle.

      Take Care of Yourselves

      Becky from San Diego

    Viewing 11 reply threads
    • Replies
        • October 1, 2011 at 10:44 am
        FormerCaregiver
        Participant

          Becky, welcome to our forum. I encourage you to fill in some details on your profile page, as this will help us to help you better.

          I feel that surgery, if possible, is the preferred option to treat any existing tumours. In general, systemic treatments can be successful if the tumour burden is low. There are people here who have had Yervoy, and hopefully they will give you their comments about it.

          Best wishes

          Frank from Australia

            • October 1, 2011 at 11:33 am
            Vermont_Donna
            Participant

              Hi,

                I participated in a clinical trial for yervoy (3mg/kg), back in December 2010 to February 2011. I am stage 3a, have had melanoma for 5 years, with many different treatments, had unresectable melanoma (all up and down my right leg and they wanted to do a leg amputation). I am a complete responder to yervoy. Please see my profile for more details, and also int he search feature of this board, put in yervoy or ipilimumab, and also side effects of ipilimumab or yevoy, and you will see lots of posts.

              I hope this works for you!

              Vermont_Donna, stage 3a, NED

              ps I did not have any severe side effects at all…..

              • October 1, 2011 at 11:33 am
              Vermont_Donna
              Participant

                Hi,

                  I participated in a clinical trial for yervoy (3mg/kg), back in December 2010 to February 2011. I am stage 3a, have had melanoma for 5 years, with many different treatments, had unresectable melanoma (all up and down my right leg and they wanted to do a leg amputation). I am a complete responder to yervoy. Please see my profile for more details, and also int he search feature of this board, put in yervoy or ipilimumab, and also side effects of ipilimumab or yevoy, and you will see lots of posts.

                I hope this works for you!

                Vermont_Donna, stage 3a, NED

                ps I did not have any severe side effects at all…..

              • October 1, 2011 at 10:44 am
              FormerCaregiver
              Participant

                Becky, welcome to our forum. I encourage you to fill in some details on your profile page, as this will help us to help you better.

                I feel that surgery, if possible, is the preferred option to treat any existing tumours. In general, systemic treatments can be successful if the tumour burden is low. There are people here who have had Yervoy, and hopefully they will give you their comments about it.

                Best wishes

                Frank from Australia

                • October 1, 2011 at 11:29 am
                jmmm
                Participant

                  My husband had 4 doses of yervoy–May 2011-July 2011.  He had minimal side effects–lethargy, a light rash and some stomach "grumblings."  His belly was always making noises.  He felt fine for the most part, was able to get all the doses on 3 week intervals and kept working about 30-40 hours a week (although he was really tired).  It did make him a bit "loopy" at times, but overall a fairly easy treatment for him.  The good news is that it worked (at least temporarily).  He had a tumor near his heart and a tumor in his GI tract and both tumors are completely gone at this point.  There was new growth in a couple of lymphnodes at his 14 week scan.  He's 3 months out of his last treatment and has had no treatment since.  The 2 tumors he has are slowly growing and we are working with BMS to get additional Yervoy treatment.  I know that Yervoy doesn't work for everyone and that usually patients have significant side effects when it's working, but for my husband it was a miracle drug, because he wouldn't be here if he didn't get Yervoy–the tumor near his heart was growing quickly and was inoperable.  Good luck with your decision.

                  • October 1, 2011 at 11:29 am
                  jmmm
                  Participant

                    My husband had 4 doses of yervoy–May 2011-July 2011.  He had minimal side effects–lethargy, a light rash and some stomach "grumblings."  His belly was always making noises.  He felt fine for the most part, was able to get all the doses on 3 week intervals and kept working about 30-40 hours a week (although he was really tired).  It did make him a bit "loopy" at times, but overall a fairly easy treatment for him.  The good news is that it worked (at least temporarily).  He had a tumor near his heart and a tumor in his GI tract and both tumors are completely gone at this point.  There was new growth in a couple of lymphnodes at his 14 week scan.  He's 3 months out of his last treatment and has had no treatment since.  The 2 tumors he has are slowly growing and we are working with BMS to get additional Yervoy treatment.  I know that Yervoy doesn't work for everyone and that usually patients have significant side effects when it's working, but for my husband it was a miracle drug, because he wouldn't be here if he didn't get Yervoy–the tumor near his heart was growing quickly and was inoperable.  Good luck with your decision.

                    • October 1, 2011 at 11:30 am
                    jmmm
                    Participant

                      My husband had 4 doses of yervoy–May 2011-July 2011.  He had minimal side effects–lethargy, a light rash and some stomach "grumblings."  His belly was always making noises.  He felt fine for the most part, was able to get all the doses on 3 week intervals and kept working about 30-40 hours a week (although he was really tired).  It did make him a bit "loopy" at times, but overall a fairly easy treatment for him.  The good news is that it worked (at least temporarily).  He had a tumor near his heart and a tumor in his GI tract and both tumors are completely gone at this point.  There was new growth in a couple of lymphnodes at his 14 week scan.  He's 3 months out of his last treatment and has had no treatment since.  The 2 tumors he has are slowly growing and we are working with BMS to get additional Yervoy treatment.  I know that Yervoy doesn't work for everyone and that usually patients have significant side effects when it's working, but for my husband it was a miracle drug, because he wouldn't be here if he didn't get Yervoy–the tumor near his heart was growing quickly and was inoperable.  Good luck with your decision.

                      • October 1, 2011 at 11:30 am
                      jmmm
                      Participant

                        My husband had 4 doses of yervoy–May 2011-July 2011.  He had minimal side effects–lethargy, a light rash and some stomach "grumblings."  His belly was always making noises.  He felt fine for the most part, was able to get all the doses on 3 week intervals and kept working about 30-40 hours a week (although he was really tired).  It did make him a bit "loopy" at times, but overall a fairly easy treatment for him.  The good news is that it worked (at least temporarily).  He had a tumor near his heart and a tumor in his GI tract and both tumors are completely gone at this point.  There was new growth in a couple of lymphnodes at his 14 week scan.  He's 3 months out of his last treatment and has had no treatment since.  The 2 tumors he has are slowly growing and we are working with BMS to get additional Yervoy treatment.  I know that Yervoy doesn't work for everyone and that usually patients have significant side effects when it's working, but for my husband it was a miracle drug, because he wouldn't be here if he didn't get Yervoy–the tumor near his heart was growing quickly and was inoperable.  Good luck with your decision.

                        • October 1, 2011 at 11:47 am
                        j.m.l.
                        Participant

                          Just went thru 1st dose of yervoy. Minimal side effects. ( I was really scared by the possibilies listed as they always do) But everyone is different. I am excited to continue this week for dose 2 as this drug seems to be very good. It is FDA approved at 3ml. Good luck.

                          • October 1, 2011 at 11:47 am
                          j.m.l.
                          Participant

                            Just went thru 1st dose of yervoy. Minimal side effects. ( I was really scared by the possibilies listed as they always do) But everyone is different. I am excited to continue this week for dose 2 as this drug seems to be very good. It is FDA approved at 3ml. Good luck.

                            • October 1, 2011 at 5:22 pm
                            killmel
                            Participant

                              Hi Becky,

                               

                              Making a decision for treatment is always difficult. I.have no experience with yervoy but wish you luck.

                              Where are you being treated & who is your doctor. I live in California and interested in knowing where good doctors are in CA.

                              Thanks for posting your doctor for  me

                              • October 1, 2011 at 5:22 pm
                              killmel
                              Participant

                                Hi Becky,

                                 

                                Making a decision for treatment is always difficult. I.have no experience with yervoy but wish you luck.

                                Where are you being treated & who is your doctor. I live in California and interested in knowing where good doctors are in CA.

                                Thanks for posting your doctor for  me

                                  • October 1, 2011 at 8:09 pm
                                  Beckyinsandiego
                                  Participant
                                    I have been going to The Angeles Clinic in Santa Monica and my Dr is Dr. Boas berg. The phone number is 310-231-2121. If you read up on this clinic you will see it is one of the best in the WORLD. People fly in from other countries to be treated here. If you make an appt there make sure to tell Dr B that Becky from San Diego sent you.

                                    Good luck

                                    • October 1, 2011 at 8:09 pm
                                    Beckyinsandiego
                                    Participant
                                      I have been going to The Angeles Clinic in Santa Monica and my Dr is Dr. Boas berg. The phone number is 310-231-2121. If you read up on this clinic you will see it is one of the best in the WORLD. People fly in from other countries to be treated here. If you make an appt there make sure to tell Dr B that Becky from San Diego sent you.

                                      Good luck

                                    • October 2, 2011 at 12:23 am
                                    killmel
                                    Participant

                                      Hi Becky,

                                       

                                      Before you make a final decision on Yeroy, which could give you severe side effects, you might want to discuss PD1 & PDL-1 with your doctor.

                                      It is a immunology treatment like yervoy with less side effects. So far, data as shown PD1 & PDL-1 drugs are more effective than Yervoy with very mild side effects if any.

                                      Since you are at Angles Clinic, I heard that PD1 & PDL-1 clinical trials would be opening at Angeles Clinic soon.

                                      I would definately ask you doctor about PD1 & PDL-1 before getting your insurance approval for Yervoy.

                                      It would be greatly appreciated by all of us if you can confirm if PD1 & PDL-1 clinical trials will be opening soon at Angles Clinic. I think that all of us want to know where we could get a PD1 & Pdl-1 drug if needed.

                                      Thanks & good luck with your decision for treatment

                                      A.

                                      • October 2, 2011 at 12:23 am
                                      killmel
                                      Participant

                                        Hi Becky,

                                         

                                        Before you make a final decision on Yeroy, which could give you severe side effects, you might want to discuss PD1 & PDL-1 with your doctor.

                                        It is a immunology treatment like yervoy with less side effects. So far, data as shown PD1 & PDL-1 drugs are more effective than Yervoy with very mild side effects if any.

                                        Since you are at Angles Clinic, I heard that PD1 & PDL-1 clinical trials would be opening at Angeles Clinic soon.

                                        I would definately ask you doctor about PD1 & PDL-1 before getting your insurance approval for Yervoy.

                                        It would be greatly appreciated by all of us if you can confirm if PD1 & PDL-1 clinical trials will be opening soon at Angles Clinic. I think that all of us want to know where we could get a PD1 & Pdl-1 drug if needed.

                                        Thanks & good luck with your decision for treatment

                                        A.

                                          • October 2, 2011 at 7:12 pm
                                          killmel
                                          Participant

                                            Becky,

                                            I totally agree that you should look into PD-1 trial before making your final decision.

                                            Good Luck!

                                            Mary

                                            • October 2, 2011 at 7:12 pm
                                            killmel
                                            Participant

                                              Becky,

                                              I totally agree that you should look into PD-1 trial before making your final decision.

                                              Good Luck!

                                              Mary

                                              • October 3, 2011 at 12:57 am
                                              killmel
                                              Participant

                                                Hi Becky,

                                                For what its worth, I called Angeles clinc last week and was told they had no PD-1 trials. They told me to call back the first of the year for an update.

                                                Pat

                                                • October 3, 2011 at 12:57 am
                                                killmel
                                                Participant

                                                  Hi Becky,

                                                  For what its worth, I called Angeles clinc last week and was told they had no PD-1 trials. They told me to call back the first of the year for an update.

                                                  Pat

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