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Starting Ipi Monday, looking for guidance

Forums General Melanoma Community Starting Ipi Monday, looking for guidance

  • Post
    kalisama
    Participant

      Stage IV, BRAF positive, active mets in brain and breast.

      Started on Zelbarof for nearly a year after brain excision and gamma knife. Developed a met in shoulder and was switched to Mek/Taf as soon as it was approved. New mets in brain and in dermal lining of brain, as well as in left breast. Gamma knife has not shown to have worked on brain lesions a month ago.

      Monday I begin Ipi with my only goal to get to Keytruda. I have never felt good about Yurvoy option and still do not. I have a colostomy resulting from divriticulitis, which I feel should exclude me from the Ipi prerequisite as clearly I have a sensitive colon.

      Merck has refused me off label use of Keytruda, so my only choice is to start Yurvoy. I will be receiving 5 gamma knife treatments on my breast as well, starting after the Ipi infusion Monday and once per day going through Friday.

      I'm posting this because I'm scared of Yervoy. Can't say why, it's just a feeling in my gut. If those of you who have done Ipi can share some of your experiences with me that I might find helpful, I'd really appreciate it. I'm somewhat new to this forum but have found nothing but wisdom here, and feel that y'all are the only ones in my world who are not speaking Swahili.

      Thank you in advance for your time,
      kali

    Viewing 20 reply threads
    • Replies
        ecc26
        Participant

          Wow, I can't blame you for being nervous! I never wanted to do Yervoy either. I did IL-2 and they nearly stopped me from that because during my first week I got such bad colitis I had to stay hospitalized for an additional 3 days so they could keep me hydrated with IV fluids and I could last more than 10 min outside of the bathroom (it's a 3 hour trip to get back home). I never trusted Yervoy and the side effects made me cringe. When IL-2 seemed to work, then new tumors started popping up I wanted to skip that and go to a clinical trial (though the trial was combining Yervoy and PD-1, but it was the PD-1 I was after). As bad luck would have it that's when I was first diagnosed with brain mets. When you say the dermal lining- are you refering to leptomenigeal disease? The first time I had brain mets they were concerned about that with me and I had to do whole brain radiation for 3 weeks because of it. Luckily my mets responded well to the radiation, though since then I've also had to have 2 rounds of gamma knife for other brain mets…

          I did the whole brain at the same time as the Yervoy and my local doctor added a self injection of Leukine (a.k.a. GM-CSF) for the first 14 days after each dose as there was some published evidence that the combintion not only improved the percentage of those that respond but also lessened the number and severity of side effects. I have no idea if it helped the side effects for me or not because I never had a dose that wasn't also accompanied by the injections, but I suspect that it did help as I had only mild colitis that did not require any additional therapy (i.e. steroids) or delays/stoppages of treatment. That said- it also didn't work and I had clear progression by the time they did scans (something else I had been leery about with yervoy- low-ish response rates).

          Everyone responds differently to it both in terms of what side effects you may get and when you may get them. Some get severe side effects immediately or very quickly, while others never have severe side effects at all, and others still get very delayed side effects. I myself am an example of just because you had it with that immunotherapy doesn't mean you'll have it with this one- I had terrible colitis with IL-2, but very mild (controllable with immodium) with the Yervoy (again, perhaps the Leukine had something to do with that as well). I would say make sure the doctor that is giving you the Yervoy is aware of your history and concerns and do not be afraid to make a pest of yourself if/when you get side effects! Many of the side effects with Yervoy are a very big deal and need to be dealt with ASAP so don't let anyone brush your concerns aside (the take 2 asprin and call me in the morning approach). 

          Regarding not being able to get the PD-1 until Yervoy is attempted- you don't have to give it very long (from my understanding anyway)- you do have to get at least 1 dose, but if you have side effects and/or progression, I don't think you have do any more than 1 dose- they just need some documentation that it was attempted (at least that's how it worked for the EAP, and the FDA approval was basically the same as the EAP guidelines). 

          Good luck going forward with your therapy- I sincerely hope that either the Yervoy works (without any intolerable side effects) or you get to move on quickly to the PD-1 (which has been great for me on the EAP, and now that it's FDA approved I can get locally- starting this Friday morning!)

          I'll be thinking of you, keep us posted on how things go

          -Eva

          ecc26
          Participant

            Wow, I can't blame you for being nervous! I never wanted to do Yervoy either. I did IL-2 and they nearly stopped me from that because during my first week I got such bad colitis I had to stay hospitalized for an additional 3 days so they could keep me hydrated with IV fluids and I could last more than 10 min outside of the bathroom (it's a 3 hour trip to get back home). I never trusted Yervoy and the side effects made me cringe. When IL-2 seemed to work, then new tumors started popping up I wanted to skip that and go to a clinical trial (though the trial was combining Yervoy and PD-1, but it was the PD-1 I was after). As bad luck would have it that's when I was first diagnosed with brain mets. When you say the dermal lining- are you refering to leptomenigeal disease? The first time I had brain mets they were concerned about that with me and I had to do whole brain radiation for 3 weeks because of it. Luckily my mets responded well to the radiation, though since then I've also had to have 2 rounds of gamma knife for other brain mets…

            I did the whole brain at the same time as the Yervoy and my local doctor added a self injection of Leukine (a.k.a. GM-CSF) for the first 14 days after each dose as there was some published evidence that the combintion not only improved the percentage of those that respond but also lessened the number and severity of side effects. I have no idea if it helped the side effects for me or not because I never had a dose that wasn't also accompanied by the injections, but I suspect that it did help as I had only mild colitis that did not require any additional therapy (i.e. steroids) or delays/stoppages of treatment. That said- it also didn't work and I had clear progression by the time they did scans (something else I had been leery about with yervoy- low-ish response rates).

            Everyone responds differently to it both in terms of what side effects you may get and when you may get them. Some get severe side effects immediately or very quickly, while others never have severe side effects at all, and others still get very delayed side effects. I myself am an example of just because you had it with that immunotherapy doesn't mean you'll have it with this one- I had terrible colitis with IL-2, but very mild (controllable with immodium) with the Yervoy (again, perhaps the Leukine had something to do with that as well). I would say make sure the doctor that is giving you the Yervoy is aware of your history and concerns and do not be afraid to make a pest of yourself if/when you get side effects! Many of the side effects with Yervoy are a very big deal and need to be dealt with ASAP so don't let anyone brush your concerns aside (the take 2 asprin and call me in the morning approach). 

            Regarding not being able to get the PD-1 until Yervoy is attempted- you don't have to give it very long (from my understanding anyway)- you do have to get at least 1 dose, but if you have side effects and/or progression, I don't think you have do any more than 1 dose- they just need some documentation that it was attempted (at least that's how it worked for the EAP, and the FDA approval was basically the same as the EAP guidelines). 

            Good luck going forward with your therapy- I sincerely hope that either the Yervoy works (without any intolerable side effects) or you get to move on quickly to the PD-1 (which has been great for me on the EAP, and now that it's FDA approved I can get locally- starting this Friday morning!)

            I'll be thinking of you, keep us posted on how things go

            -Eva

            ecc26
            Participant

              Wow, I can't blame you for being nervous! I never wanted to do Yervoy either. I did IL-2 and they nearly stopped me from that because during my first week I got such bad colitis I had to stay hospitalized for an additional 3 days so they could keep me hydrated with IV fluids and I could last more than 10 min outside of the bathroom (it's a 3 hour trip to get back home). I never trusted Yervoy and the side effects made me cringe. When IL-2 seemed to work, then new tumors started popping up I wanted to skip that and go to a clinical trial (though the trial was combining Yervoy and PD-1, but it was the PD-1 I was after). As bad luck would have it that's when I was first diagnosed with brain mets. When you say the dermal lining- are you refering to leptomenigeal disease? The first time I had brain mets they were concerned about that with me and I had to do whole brain radiation for 3 weeks because of it. Luckily my mets responded well to the radiation, though since then I've also had to have 2 rounds of gamma knife for other brain mets…

              I did the whole brain at the same time as the Yervoy and my local doctor added a self injection of Leukine (a.k.a. GM-CSF) for the first 14 days after each dose as there was some published evidence that the combintion not only improved the percentage of those that respond but also lessened the number and severity of side effects. I have no idea if it helped the side effects for me or not because I never had a dose that wasn't also accompanied by the injections, but I suspect that it did help as I had only mild colitis that did not require any additional therapy (i.e. steroids) or delays/stoppages of treatment. That said- it also didn't work and I had clear progression by the time they did scans (something else I had been leery about with yervoy- low-ish response rates).

              Everyone responds differently to it both in terms of what side effects you may get and when you may get them. Some get severe side effects immediately or very quickly, while others never have severe side effects at all, and others still get very delayed side effects. I myself am an example of just because you had it with that immunotherapy doesn't mean you'll have it with this one- I had terrible colitis with IL-2, but very mild (controllable with immodium) with the Yervoy (again, perhaps the Leukine had something to do with that as well). I would say make sure the doctor that is giving you the Yervoy is aware of your history and concerns and do not be afraid to make a pest of yourself if/when you get side effects! Many of the side effects with Yervoy are a very big deal and need to be dealt with ASAP so don't let anyone brush your concerns aside (the take 2 asprin and call me in the morning approach). 

              Regarding not being able to get the PD-1 until Yervoy is attempted- you don't have to give it very long (from my understanding anyway)- you do have to get at least 1 dose, but if you have side effects and/or progression, I don't think you have do any more than 1 dose- they just need some documentation that it was attempted (at least that's how it worked for the EAP, and the FDA approval was basically the same as the EAP guidelines). 

              Good luck going forward with your therapy- I sincerely hope that either the Yervoy works (without any intolerable side effects) or you get to move on quickly to the PD-1 (which has been great for me on the EAP, and now that it's FDA approved I can get locally- starting this Friday morning!)

              I'll be thinking of you, keep us posted on how things go

              -Eva

              arthurjedi007
              Participant

                I did ipi last winter and it was no big deal for me but everyone is different. Just some itching, rash and a couple times a churny stomach and that was it. I would make sure your doctor monitors you very carefully for the possibility of divritculitis. Also immediately report any symptoms. They told me only to call if something lasts for more than 24 to 48 hours but with your situation I believe you should call them immediately in my opinion. I've read some people's doc only doing 1 ipi dose and due to their reaction to it taking them off and going to keytruda. Good luck.

                Artie

                  Marianne quinn
                  Participant

                    My husband had 4 doses of 10 mg ipi. He did ok. Be sure t have Benadryl on hand and lotion for the rash. He started out on a bland diet . He found that he had to avoid milk, iice cream but could tolerate yogurt. Whole wheat bread still gives him problems and it has been six months since the last dose. He often ate just whie rice and chicken. He believes that making a smoothie with plain Greek yogurt, peanut butter, applesauce, and banana was essential in keeping his GI tract in check. If he had more than 3 stools , he took immodium. No popcorn either. He has quit sugar too because it upsets his stomach. Now he eats almost anything except the whole grains and uses lactaid milk. He used soy milk for quite awhile. Hope that is helpful and good luck.

                    Marianne quinn
                    Participant

                      My husband had 4 doses of 10 mg ipi. He did ok. Be sure t have Benadryl on hand and lotion for the rash. He started out on a bland diet . He found that he had to avoid milk, iice cream but could tolerate yogurt. Whole wheat bread still gives him problems and it has been six months since the last dose. He often ate just whie rice and chicken. He believes that making a smoothie with plain Greek yogurt, peanut butter, applesauce, and banana was essential in keeping his GI tract in check. If he had more than 3 stools , he took immodium. No popcorn either. He has quit sugar too because it upsets his stomach. Now he eats almost anything except the whole grains and uses lactaid milk. He used soy milk for quite awhile. Hope that is helpful and good luck.

                      Marianne quinn
                      Participant

                        My husband had 4 doses of 10 mg ipi. He did ok. Be sure t have Benadryl on hand and lotion for the rash. He started out on a bland diet . He found that he had to avoid milk, iice cream but could tolerate yogurt. Whole wheat bread still gives him problems and it has been six months since the last dose. He often ate just whie rice and chicken. He believes that making a smoothie with plain Greek yogurt, peanut butter, applesauce, and banana was essential in keeping his GI tract in check. If he had more than 3 stools , he took immodium. No popcorn either. He has quit sugar too because it upsets his stomach. Now he eats almost anything except the whole grains and uses lactaid milk. He used soy milk for quite awhile. Hope that is helpful and good luck.

                      arthurjedi007
                      Participant

                        I did ipi last winter and it was no big deal for me but everyone is different. Just some itching, rash and a couple times a churny stomach and that was it. I would make sure your doctor monitors you very carefully for the possibility of divritculitis. Also immediately report any symptoms. They told me only to call if something lasts for more than 24 to 48 hours but with your situation I believe you should call them immediately in my opinion. I've read some people's doc only doing 1 ipi dose and due to their reaction to it taking them off and going to keytruda. Good luck.

                        Artie

                        arthurjedi007
                        Participant

                          I did ipi last winter and it was no big deal for me but everyone is different. Just some itching, rash and a couple times a churny stomach and that was it. I would make sure your doctor monitors you very carefully for the possibility of divritculitis. Also immediately report any symptoms. They told me only to call if something lasts for more than 24 to 48 hours but with your situation I believe you should call them immediately in my opinion. I've read some people's doc only doing 1 ipi dose and due to their reaction to it taking them off and going to keytruda. Good luck.

                          Artie

                          JustMeInCA
                          Participant

                            My father, who will turn 83 in a couple months, has now done two rounds of Ipi, the new minimum following FDA approval. He had no symptoms whatsoever after the first infusion, beyond some redness and inflammation in his tumors. He just had the second infusion a couple days ago, so it's still too early to say if he will continue side-effect free, but for now he's feeling just fine and was running errands around town today. Like you, I've been paranoid about the Yervoy, more so since we found out he'd need two rounds instead of one. I'd suggest you do it to get to the Keytruda and just monitor your side effects closely, while being careful not to overworry either.

                              JustMeInCA
                              Participant

                                Sorry, meant to say "following the FDA approval of Keytruda."

                                JustMeInCA
                                Participant

                                  Sorry, meant to say "following the FDA approval of Keytruda."

                                  JustMeInCA
                                  Participant

                                    Sorry, meant to say "following the FDA approval of Keytruda."

                                  JustMeInCA
                                  Participant

                                    My father, who will turn 83 in a couple months, has now done two rounds of Ipi, the new minimum following FDA approval. He had no symptoms whatsoever after the first infusion, beyond some redness and inflammation in his tumors. He just had the second infusion a couple days ago, so it's still too early to say if he will continue side-effect free, but for now he's feeling just fine and was running errands around town today. Like you, I've been paranoid about the Yervoy, more so since we found out he'd need two rounds instead of one. I'd suggest you do it to get to the Keytruda and just monitor your side effects closely, while being careful not to overworry either.

                                    JustMeInCA
                                    Participant

                                      My father, who will turn 83 in a couple months, has now done two rounds of Ipi, the new minimum following FDA approval. He had no symptoms whatsoever after the first infusion, beyond some redness and inflammation in his tumors. He just had the second infusion a couple days ago, so it's still too early to say if he will continue side-effect free, but for now he's feeling just fine and was running errands around town today. Like you, I've been paranoid about the Yervoy, more so since we found out he'd need two rounds instead of one. I'd suggest you do it to get to the Keytruda and just monitor your side effects closely, while being careful not to overworry either.

                                      Gene_S
                                      Participant

                                        Hello Kali,

                                        My husband was on the Ipi (10mg/kg) with the GM-CSF self injection shots.  He did well and has been NED for 2 years almost.  He took the Ipi for the initial 12 weeks  of an infusion every week and then went to the maintenance part of infusions every 12 weeks for 1 year 9 months.  He had the itching and sometimes fatigue but never had the bowel problems.

                                        Check out his profile page if you wish to read more about his journey.  Hopefully you will not have the bad side effects also and I hear that the radiation makes the yervoy work better.

                                        Good luck and try not to worry to much but if you do have side effects call the onc. immediately.

                                        Judy (loving wife of Gene Stage IV and now NED)

                                        Gene_S
                                        Participant

                                          Hello Kali,

                                          My husband was on the Ipi (10mg/kg) with the GM-CSF self injection shots.  He did well and has been NED for 2 years almost.  He took the Ipi for the initial 12 weeks  of an infusion every week and then went to the maintenance part of infusions every 12 weeks for 1 year 9 months.  He had the itching and sometimes fatigue but never had the bowel problems.

                                          Check out his profile page if you wish to read more about his journey.  Hopefully you will not have the bad side effects also and I hear that the radiation makes the yervoy work better.

                                          Good luck and try not to worry to much but if you do have side effects call the onc. immediately.

                                          Judy (loving wife of Gene Stage IV and now NED)

                                          Gene_S
                                          Participant

                                            Hello Kali,

                                            My husband was on the Ipi (10mg/kg) with the GM-CSF self injection shots.  He did well and has been NED for 2 years almost.  He took the Ipi for the initial 12 weeks  of an infusion every week and then went to the maintenance part of infusions every 12 weeks for 1 year 9 months.  He had the itching and sometimes fatigue but never had the bowel problems.

                                            Check out his profile page if you wish to read more about his journey.  Hopefully you will not have the bad side effects also and I hear that the radiation makes the yervoy work better.

                                            Good luck and try not to worry to much but if you do have side effects call the onc. immediately.

                                            Judy (loving wife of Gene Stage IV and now NED)

                                            kalisama
                                            Participant

                                              Thank you all for the input. My onc is convinced that my history of divriticulitis will not make me more prone to colitis. He's a firm believer in Yervoy and is very aware of my trepidations. 

                                              I apprreciate your stories, perspectives and well wishes. Hopefully I will ease through this next phase of my treatment without incident.

                                              Best of health to all,
                                              kali

                                              kalisama
                                              Participant

                                                Thank you all for the input. My onc is convinced that my history of divriticulitis will not make me more prone to colitis. He's a firm believer in Yervoy and is very aware of my trepidations. 

                                                I apprreciate your stories, perspectives and well wishes. Hopefully I will ease through this next phase of my treatment without incident.

                                                Best of health to all,
                                                kali

                                                kalisama
                                                Participant

                                                  Thank you all for the input. My onc is convinced that my history of divriticulitis will not make me more prone to colitis. He's a firm believer in Yervoy and is very aware of my trepidations. 

                                                  I apprreciate your stories, perspectives and well wishes. Hopefully I will ease through this next phase of my treatment without incident.

                                                  Best of health to all,
                                                  kali

                                                  Ginger8888
                                                  Participant

                                                    I finished Yervoy Aug 13th with no side effects but maybe some fatigue every now and then, i have had diverticulitis for several years and Yervoy did not effect it any at all..I had my scans a couple weeks ago and it's working, the spots in my lungs are GONE and the one in my neck has shrank to about half it's size…Drink plenty of water and have a few cans of V-8 juice a day..

                                                    Ginger8888
                                                    Participant

                                                      I finished Yervoy Aug 13th with no side effects but maybe some fatigue every now and then, i have had diverticulitis for several years and Yervoy did not effect it any at all..I had my scans a couple weeks ago and it's working, the spots in my lungs are GONE and the one in my neck has shrank to about half it's size…Drink plenty of water and have a few cans of V-8 juice a day..

                                                      Ginger8888
                                                      Participant

                                                        I finished Yervoy Aug 13th with no side effects but maybe some fatigue every now and then, i have had diverticulitis for several years and Yervoy did not effect it any at all..I had my scans a couple weeks ago and it's working, the spots in my lungs are GONE and the one in my neck has shrank to about half it's size…Drink plenty of water and have a few cans of V-8 juice a day..

                                                          kalisama
                                                          Participant

                                                            happy to hear your positive storie, Ginger! you have given me some hope with this treatment. 

                                                            to your continued healing,
                                                            kali

                                                            Ginger8888
                                                            Participant

                                                              Thank you, just stay positive and drink plenty of water and V-8 juice..Good luck

                                                              Ginger8888
                                                              Participant

                                                                Thank you, just stay positive and drink plenty of water and V-8 juice..Good luck

                                                                Ginger8888
                                                                Participant

                                                                  Thank you, just stay positive and drink plenty of water and V-8 juice..Good luck

                                                                  kalisama
                                                                  Participant

                                                                    happy to hear your positive storie, Ginger! you have given me some hope with this treatment. 

                                                                    to your continued healing,
                                                                    kali

                                                                    kalisama
                                                                    Participant

                                                                      happy to hear your positive storie, Ginger! you have given me some hope with this treatment. 

                                                                      to your continued healing,
                                                                      kali

                                                                    RJoeyB
                                                                    Participant

                                                                      You're getting good advice, I'll just add my two cents…  I did ipi in Spring 2013 and tolerated it well.  When I did IL-2 a few years ago, it was GI issues (diarrhea) that were the cause of me to stop dosing, and I also gave had a small bowel resection, but with Yervoy, I didn't experience any GI problems.  My biggest issue was fatigue that seemed to be cumulative, worse after each successive infusion, but it wasn't debilitating.  As mentioned by many, report any concerns to your doctor sooner rather than later and they can often nip it in the bud.  There is an underlying desire to "push through" and maximize treatment, but don't risk it, especially now with the other treatment options available.  

                                                                      Best wishes, Joe

                                                                      RJoeyB
                                                                      Participant

                                                                        You're getting good advice, I'll just add my two cents…  I did ipi in Spring 2013 and tolerated it well.  When I did IL-2 a few years ago, it was GI issues (diarrhea) that were the cause of me to stop dosing, and I also gave had a small bowel resection, but with Yervoy, I didn't experience any GI problems.  My biggest issue was fatigue that seemed to be cumulative, worse after each successive infusion, but it wasn't debilitating.  As mentioned by many, report any concerns to your doctor sooner rather than later and they can often nip it in the bud.  There is an underlying desire to "push through" and maximize treatment, but don't risk it, especially now with the other treatment options available.  

                                                                        Best wishes, Joe

                                                                        RJoeyB
                                                                        Participant

                                                                          You're getting good advice, I'll just add my two cents…  I did ipi in Spring 2013 and tolerated it well.  When I did IL-2 a few years ago, it was GI issues (diarrhea) that were the cause of me to stop dosing, and I also gave had a small bowel resection, but with Yervoy, I didn't experience any GI problems.  My biggest issue was fatigue that seemed to be cumulative, worse after each successive infusion, but it wasn't debilitating.  As mentioned by many, report any concerns to your doctor sooner rather than later and they can often nip it in the bud.  There is an underlying desire to "push through" and maximize treatment, but don't risk it, especially now with the other treatment options available.  

                                                                          Best wishes, Joe

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