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melanoma and multiple sclerosis scared starting ipilumimab

Forums General Melanoma Community melanoma and multiple sclerosis scared starting ipilumimab

  • Post
    jend33
    Participant

      Hi, im new to this site and my husband is starting to treatment but i always say we. He is my best friend and husband we have been together since I was 18 , that was 23 years ago. still the love of my life and I cant fix this one and it is killing me. i was with him the first time they removed the melanoma 15 yrs ago. i have gone threw everything with him with the MS. it really had its ups and downs but this again after 13 years of doing pet scans every year always clean, for the dr to say man i think you beat this we dont have to do them every year we can go every 2 . well let me tell you go every year PLEASE. He is stage 4 with them all over abdomen area one very large and other scattered threw out,  the brain they said way to many to count.we did whole head radiation it helped shrink the swelling and some of the lesions, he also has lesions from the ms in the brain and spinal cord. he was on rebif for a few yearsbut it made him feel worse so we made a deciosson together to give it a year with out the rebif , he did so much better was a ble to truly live without always feeling like you have the flu. didnt get anymore lesions while off it (yea). but now we are both scaredof what can come as side effects of the yervoy, but it is worth the risk. we already did the zelboraf first because tumor was so big and extremly painful in his abdomen. my poor baby is use to pain from the MS but good grief the zelboraf was a miricle drug worked great for 4 close to 5 month and stopped working . most lesions in brain gone only few left but there is a new one now and everything that went away from zelboraf is back full force in abdomen. my baby was a strong man this has kicked his azz. lost so much weight he can barely eat, and can ensure be any more expensive? sorry im rambling im not sure if this is even making sence my eyes keep tearing up as i write this . I am just praying that it works I cant loose him any time soon we were supose to grow old together. we are blessed to have three great children and other family who supports him.Has any one else with MS complete yervoy. and if so what wee the side effects i know everyone will be diff. we really are waiting for the pd-1 come on FDA. thanks for letting me ramble dont have anyone else totalk to about this thats going threw the same thing. we will keep fighting,

    Viewing 9 reply threads
    • Replies
        Scuba Doc
        Participant

          My wife has MS and metastasized melanoma and is considering IPI while  waiting for the PD-1 drugs to be approved — she is treating at Dana Farber in Boston. Just sent you a e-mail with her cell phone number if you want to talk—-

          Scuba Doc
          Participant

            My wife has MS and metastasized melanoma and is considering IPI while  waiting for the PD-1 drugs to be approved — she is treating at Dana Farber in Boston. Just sent you a e-mail with her cell phone number if you want to talk—-

            Scuba Doc
            Participant

              My wife has MS and metastasized melanoma and is considering IPI while  waiting for the PD-1 drugs to be approved — she is treating at Dana Farber in Boston. Just sent you a e-mail with her cell phone number if you want to talk—-

                jend33
                Participant

                  It was great talking to you, we will deff. keep in touch . Again Happy Birthday and i know you had a wonderfull time at your party jealous of the lobster lol… that was awesome of your children  speak to soon ill keep you posted on the ipi.  take care and good luck ill be praying for you and your family. 

                  jend33
                  Participant

                    It was great talking to you, we will deff. keep in touch . Again Happy Birthday and i know you had a wonderfull time at your party jealous of the lobster lol… that was awesome of your children  speak to soon ill keep you posted on the ipi.  take care and good luck ill be praying for you and your family. 

                    jend33
                    Participant

                      It was great talking to you, we will deff. keep in touch . Again Happy Birthday and i know you had a wonderfull time at your party jealous of the lobster lol… that was awesome of your children  speak to soon ill keep you posted on the ipi.  take care and good luck ill be praying for you and your family. 

                      Don O’Neal
                      Participant

                        Sir, are you still active on this board, my wife has MS And Stage 4 Melanoma and will be starting Opdivo and Yervoy next week wanted to see if you had any feedback.

                         

                        Thanks

                        Don

                      LuckyMan51
                      Participant

                        Hi,

                        I had the Yervoy infusion treatments twice and had very minor and manageable side effects. The first time I was a little itchy and I had some minor diarrhea. The second time I was quite a bit more itchy (like a mild to moderate case of poison ivy that would come and go) and I had a bit more diarrhea. The diarrhea was contained with Imodium and I had a prescription med a couple of times for it. I never had to do steroids. From reading other comments I have seen some people that have had more difficult side effects but I think that is a relatively small percentage of the patients. My Dr told me to report any symptoms that I had immediately so they could be addressed and treated quickly. I would urge you to stay ahead of any issues and share any and all changes with your melanoma specialist immediatly. It is weird having people asking about your bowel movements with great interest but one does get used to it. I had stereotactic radiation treatment during the a Yervoy infusion series both times as well. I am hoping I stay NED forever but am staying on top of new drugs that are being tested currently. The Anti Pd-1 mentioned by the earlier respondent really has had some impressive results. If that was available for me I would have leaned that way and would urge you to inquire as well. This disease is a nasty thing but once the reality of it sets in we are fortunate that there are number of new drugs that offer us all a chance to hopefully transform a deadly disease into a chronic disorder that we can treat and hopefully cure. Good luck, do your homework, stay strong, keep the faith! 

                         

                         

                        LuckyMan51
                        Participant

                          Hi,

                          I had the Yervoy infusion treatments twice and had very minor and manageable side effects. The first time I was a little itchy and I had some minor diarrhea. The second time I was quite a bit more itchy (like a mild to moderate case of poison ivy that would come and go) and I had a bit more diarrhea. The diarrhea was contained with Imodium and I had a prescription med a couple of times for it. I never had to do steroids. From reading other comments I have seen some people that have had more difficult side effects but I think that is a relatively small percentage of the patients. My Dr told me to report any symptoms that I had immediately so they could be addressed and treated quickly. I would urge you to stay ahead of any issues and share any and all changes with your melanoma specialist immediatly. It is weird having people asking about your bowel movements with great interest but one does get used to it. I had stereotactic radiation treatment during the a Yervoy infusion series both times as well. I am hoping I stay NED forever but am staying on top of new drugs that are being tested currently. The Anti Pd-1 mentioned by the earlier respondent really has had some impressive results. If that was available for me I would have leaned that way and would urge you to inquire as well. This disease is a nasty thing but once the reality of it sets in we are fortunate that there are number of new drugs that offer us all a chance to hopefully transform a deadly disease into a chronic disorder that we can treat and hopefully cure. Good luck, do your homework, stay strong, keep the faith! 

                           

                           

                          LuckyMan51
                          Participant

                            Hi,

                            I had the Yervoy infusion treatments twice and had very minor and manageable side effects. The first time I was a little itchy and I had some minor diarrhea. The second time I was quite a bit more itchy (like a mild to moderate case of poison ivy that would come and go) and I had a bit more diarrhea. The diarrhea was contained with Imodium and I had a prescription med a couple of times for it. I never had to do steroids. From reading other comments I have seen some people that have had more difficult side effects but I think that is a relatively small percentage of the patients. My Dr told me to report any symptoms that I had immediately so they could be addressed and treated quickly. I would urge you to stay ahead of any issues and share any and all changes with your melanoma specialist immediatly. It is weird having people asking about your bowel movements with great interest but one does get used to it. I had stereotactic radiation treatment during the a Yervoy infusion series both times as well. I am hoping I stay NED forever but am staying on top of new drugs that are being tested currently. The Anti Pd-1 mentioned by the earlier respondent really has had some impressive results. If that was available for me I would have leaned that way and would urge you to inquire as well. This disease is a nasty thing but once the reality of it sets in we are fortunate that there are number of new drugs that offer us all a chance to hopefully transform a deadly disease into a chronic disorder that we can treat and hopefully cure. Good luck, do your homework, stay strong, keep the faith! 

                             

                             

                              jend33
                              Participant

                                Hi,

                                Thank you for the response I am defiantly up to date on the pd-1 that is what we are waiting for hopefully it will be fda approved soon, but in the mean time we will be starting the IPI on 4/23. It has been a roller coaster waiting for the insurance to approve around 2 weeks, felt like months. The approval for the zelboraf only took literally 10 min.. I am very happy he was approved when we received the email i was doing the happy dance. Were you able to see the IPI working (shrinking tumors).I am very happy for you and all your success with the drug. they are doing wonderful things now for melanoma, if he was at stage 4  15 years ago he never would of had a chance.Believe me i inquire about all procedures i am his biggest supporter. I agree with you hopefully one day it will just be a chronic disorder. Thank you for taking your time to tell me your story, it does give me hope and we all need to believe.

                                jend33
                                Participant

                                  Hi,

                                  Thank you for the response I am defiantly up to date on the pd-1 that is what we are waiting for hopefully it will be fda approved soon, but in the mean time we will be starting the IPI on 4/23. It has been a roller coaster waiting for the insurance to approve around 2 weeks, felt like months. The approval for the zelboraf only took literally 10 min.. I am very happy he was approved when we received the email i was doing the happy dance. Were you able to see the IPI working (shrinking tumors).I am very happy for you and all your success with the drug. they are doing wonderful things now for melanoma, if he was at stage 4  15 years ago he never would of had a chance.Believe me i inquire about all procedures i am his biggest supporter. I agree with you hopefully one day it will just be a chronic disorder. Thank you for taking your time to tell me your story, it does give me hope and we all need to believe.

                                  jend33
                                  Participant

                                    Hi,

                                    Thank you for the response I am defiantly up to date on the pd-1 that is what we are waiting for hopefully it will be fda approved soon, but in the mean time we will be starting the IPI on 4/23. It has been a roller coaster waiting for the insurance to approve around 2 weeks, felt like months. The approval for the zelboraf only took literally 10 min.. I am very happy he was approved when we received the email i was doing the happy dance. Were you able to see the IPI working (shrinking tumors).I am very happy for you and all your success with the drug. they are doing wonderful things now for melanoma, if he was at stage 4  15 years ago he never would of had a chance.Believe me i inquire about all procedures i am his biggest supporter. I agree with you hopefully one day it will just be a chronic disorder. Thank you for taking your time to tell me your story, it does give me hope and we all need to believe.

                                    LuckyMan51
                                    Participant

                                      When I had the Yervoy infusion I also had SRS (think it's called stereotactic surgery) on the tumor between the second and third infusion. That combo supposedly let's the radiation break up the tumor in the body which further stimulates the bodies reaction to the Yervoy which takes the breaks off the bodies natural defenses. Although in some cases people see growth first then shrinkage, in my case I didn't have growth but I just saw shrinkage. I did a round two of the Yervoy/radiation combo on the same spot 1 1/2 years later following a craineomety clean up of the re growth.  

                                      LuckyMan51
                                      Participant

                                        When I had the Yervoy infusion I also had SRS (think it's called stereotactic surgery) on the tumor between the second and third infusion. That combo supposedly let's the radiation break up the tumor in the body which further stimulates the bodies reaction to the Yervoy which takes the breaks off the bodies natural defenses. Although in some cases people see growth first then shrinkage, in my case I didn't have growth but I just saw shrinkage. I did a round two of the Yervoy/radiation combo on the same spot 1 1/2 years later following a craineomety clean up of the re growth.  

                                        LuckyMan51
                                        Participant

                                          When I had the Yervoy infusion I also had SRS (think it's called stereotactic surgery) on the tumor between the second and third infusion. That combo supposedly let's the radiation break up the tumor in the body which further stimulates the bodies reaction to the Yervoy which takes the breaks off the bodies natural defenses. Although in some cases people see growth first then shrinkage, in my case I didn't have growth but I just saw shrinkage. I did a round two of the Yervoy/radiation combo on the same spot 1 1/2 years later following a craineomety clean up of the re growth.  

                                        green50
                                        Participant

                                          Hi Jennifer.  MS and melanoma both have a vitamin D connection:  they're both correlated with low vitamin D status.  I would suggest taking large doses of D. (See:www. Mercola.com  for optimum blood levels.  Also, take a look at LDN (low dose naltrexone); it will boost the immune system.  The is considerable information on Youtube etc. and testimonials about it.  Good Luck!

                                          Geoff

                                          green50
                                          Participant

                                            Hi Jennifer.  MS and melanoma both have a vitamin D connection:  they're both correlated with low vitamin D status.  I would suggest taking large doses of D. (See:www. Mercola.com  for optimum blood levels.  Also, take a look at LDN (low dose naltrexone); it will boost the immune system.  The is considerable information on Youtube etc. and testimonials about it.  Good Luck!

                                            Geoff

                                            green50
                                            Participant

                                              Hi Jennifer.  MS and melanoma both have a vitamin D connection:  they're both correlated with low vitamin D status.  I would suggest taking large doses of D. (See:www. Mercola.com  for optimum blood levels.  Also, take a look at LDN (low dose naltrexone); it will boost the immune system.  The is considerable information on Youtube etc. and testimonials about it.  Good Luck!

                                              Geoff

                                                PinkBunnyWife
                                                Participant

                                                  Geoff, I read your post from 2014 and wondered if anyone has been using LDN (low dose naltrexone) to put the brakes on Ipi/Nivo when it has gotten away from them and produced adrenal crash. Ideas? Would love to hear them.

                                                  Don O’Neal
                                                  Participant

                                                    I too would love to hear feedback, as we are on this path with MS And starting opdivo and yervoy next week.

                                                     

                                                  Caity
                                                  Participant
                                                    In the same boat and wondering what the outcome was for immunotherapy with MS?
                                                Viewing 9 reply threads
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