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ipi

› Forums › General Melanoma Community › ipi

  • Post
    • August 11, 2011 at 3:22 pm
    ShellyB
    Participant

      hi,

      i'm really keen to get as much information on ipi as possible. Would like to hear from anyone that was on it, and as to how it worked for them, or not. and what kind of side effects to expect. I am starting on Temodal next week for two cycles and then on ipi, as i'm in ireland, ipi cannot be administered as a first line drug, so i have to give Temodal a try, maybe this might work without ipi.

      any info on this subject would be great, i had a look on the website but all that seems to stick out is the serious side effect, and serious they seem

      hi,

      i'm really keen to get as much information on ipi as possible. Would like to hear from anyone that was on it, and as to how it worked for them, or not. and what kind of side effects to expect. I am starting on Temodal next week for two cycles and then on ipi, as i'm in ireland, ipi cannot be administered as a first line drug, so i have to give Temodal a try, maybe this might work without ipi.

      any info on this subject would be great, i had a look on the website but all that seems to stick out is the serious side effect, and serious they seem

       

      thanks

      michelle

    Viewing 3 reply threads
    • Replies
        • August 11, 2011 at 3:47 pm
        Teodora
        Guest

          Michelle,

          There are quite a bit of people on this board that have done Ipi/Yervoy/ in clinical trials that have graciously  shared their experiences:the ones that spring to mind are KarenNY, TracyLee,MaryBeth and Jeff,cfw43716,Dona Vermont etc.Lisa13  just started Ipi in Toronto.

          You can read all their postings /any postings related to Yervoy/Ipi/ by simply typing their names in the "Search" field or just type "Ipi/Yervoy" in the "Search" field and you can get a lots of useful information from my melanoma fellow warriors.

          Regarding the side effects-Ipi is administered in the hospitals and the patients are strictly monitored just because this is a new drug ,was experimental untill recently and the way it works is it targets a protein that holds the break to the T-cells-once released, they are literally unleashed and they attack the tumor/cancer but sometimesby  doing so they also can attack your own body organs:therefore thay talk  about autoimmune disease.

          Anyway most people do not have severe side effects-mosly rush, and the ones that have-Karen in New York had a bad diahrea for example- are controlled by medicines for example corticosteroids.

          Ipi so far is the most efficient and promising treatment for metastatic melanoma and is less toxic/angerous than IL-2,the other standard  treatment that proved successful.

          But, anything to stay alive, right?Too bad there is a different protocol in Ireland,but Ipi might better work after having another treatment so you never know although time is of a crucial essence with melanoma.

          I am wishing you good luck in battle with melanoma,

          Teodora

            • August 11, 2011 at 5:14 pm
            Lisa13
            Participant

              Hi Michelle,

              I just started ipi yesterday.  I was given a bunch of information on side effects – including severe side effects that occured in a very small amount of people (1%). The main side effects most people have experienced are diarrhea, rash and fatigue. There are other side effects like vomiting, flushing, headache, abdominal pain and fever – but this only occurs in 5 to 20% of people.   Yes, there can be severe side effects which are life threatening, but this is why you have to notify the Dr immediately if something seems not right. All symptoms can be controlled with close monitoring and medicine.

              I agree with Teodora, ipi is the most promising drug they have right now next to the B-RAF drug. The other clinical study drugs that seem to be promising are TIL and Anti-PD1 (in my opinion).  If you've got lower tumour burden or are in a situation where you've got about 3 months for something to work, this is the drug in my opinion.

              Best of luck,

              Lisa

              • August 11, 2011 at 5:14 pm
              Lisa13
              Participant

                Hi Michelle,

                I just started ipi yesterday.  I was given a bunch of information on side effects – including severe side effects that occured in a very small amount of people (1%). The main side effects most people have experienced are diarrhea, rash and fatigue. There are other side effects like vomiting, flushing, headache, abdominal pain and fever – but this only occurs in 5 to 20% of people.   Yes, there can be severe side effects which are life threatening, but this is why you have to notify the Dr immediately if something seems not right. All symptoms can be controlled with close monitoring and medicine.

                I agree with Teodora, ipi is the most promising drug they have right now next to the B-RAF drug. The other clinical study drugs that seem to be promising are TIL and Anti-PD1 (in my opinion).  If you've got lower tumour burden or are in a situation where you've got about 3 months for something to work, this is the drug in my opinion.

                Best of luck,

                Lisa

              • August 11, 2011 at 3:47 pm
              Teodora
              Guest

                Michelle,

                There are quite a bit of people on this board that have done Ipi/Yervoy/ in clinical trials that have graciously  shared their experiences:the ones that spring to mind are KarenNY, TracyLee,MaryBeth and Jeff,cfw43716,Dona Vermont etc.Lisa13  just started Ipi in Toronto.

                You can read all their postings /any postings related to Yervoy/Ipi/ by simply typing their names in the "Search" field or just type "Ipi/Yervoy" in the "Search" field and you can get a lots of useful information from my melanoma fellow warriors.

                Regarding the side effects-Ipi is administered in the hospitals and the patients are strictly monitored just because this is a new drug ,was experimental untill recently and the way it works is it targets a protein that holds the break to the T-cells-once released, they are literally unleashed and they attack the tumor/cancer but sometimesby  doing so they also can attack your own body organs:therefore thay talk  about autoimmune disease.

                Anyway most people do not have severe side effects-mosly rush, and the ones that have-Karen in New York had a bad diahrea for example- are controlled by medicines for example corticosteroids.

                Ipi so far is the most efficient and promising treatment for metastatic melanoma and is less toxic/angerous than IL-2,the other standard  treatment that proved successful.

                But, anything to stay alive, right?Too bad there is a different protocol in Ireland,but Ipi might better work after having another treatment so you never know although time is of a crucial essence with melanoma.

                I am wishing you good luck in battle with melanoma,

                Teodora

                • August 11, 2011 at 7:20 pm
                TracyLee
                Participant

                  Michelle,

                  I have completed all 4 doses of ipi.

                  I had a slight itching on my tummy, never a visible rash.

                  Rounds 1 and 2 were no problem, at all. Maybe very mild fatigue, which does kind of build as time goes on. Just an excuse for husband and kids to pitch in more!

                  Round 3 – ugh! I was vomiting and dizzy for 3 days. This was the only dose that happened. Once I got that resolved (I was drinking Sprite/eating Saltines – then finally switched to water/graham crackers and that worked for me), I was just tired.

                  Round 4 – fatigue.

                  It took about 2.5 hours from start to finish each transfusion.

                  While I might be a late responder, I AM seeing a gradual decrease in my very obvious neck nodes.

                  I just started BRAF on Monday, so I will kick it to the curb!

                  Best of luck, don't worry, and ALWAYS let your doctor know about any issues. They are anxious to help you feel comfortable, and want to help. I called a LOT and felt like a pesk, but they never minded and told me to call, anytime.

                  TracyLee

                  • August 11, 2011 at 7:20 pm
                  TracyLee
                  Participant

                    Michelle,

                    I have completed all 4 doses of ipi.

                    I had a slight itching on my tummy, never a visible rash.

                    Rounds 1 and 2 were no problem, at all. Maybe very mild fatigue, which does kind of build as time goes on. Just an excuse for husband and kids to pitch in more!

                    Round 3 – ugh! I was vomiting and dizzy for 3 days. This was the only dose that happened. Once I got that resolved (I was drinking Sprite/eating Saltines – then finally switched to water/graham crackers and that worked for me), I was just tired.

                    Round 4 – fatigue.

                    It took about 2.5 hours from start to finish each transfusion.

                    While I might be a late responder, I AM seeing a gradual decrease in my very obvious neck nodes.

                    I just started BRAF on Monday, so I will kick it to the curb!

                    Best of luck, don't worry, and ALWAYS let your doctor know about any issues. They are anxious to help you feel comfortable, and want to help. I called a LOT and felt like a pesk, but they never minded and told me to call, anytime.

                    TracyLee

                      • August 11, 2011 at 8:25 pm
                      NYKaren
                      Participant

                        Hi Michelle,

                        Basically what everyone has said is what I would say as well.  The most serious side effects happen in a small percentage of people.

                        As Theodora said, mine have been diarhhea and skin rash.  Both bad, but in the scheme of things, controllable.

                        I'm at week 12 now, thought I was responding but now not sure, just saw the doc today, and he said that many people see the  most response between weeks 12 and 16, so fingers are still crossed!

                        Best of luck,

                        karen

                        • August 11, 2011 at 8:25 pm
                        NYKaren
                        Participant

                          Hi Michelle,

                          Basically what everyone has said is what I would say as well.  The most serious side effects happen in a small percentage of people.

                          As Theodora said, mine have been diarhhea and skin rash.  Both bad, but in the scheme of things, controllable.

                          I'm at week 12 now, thought I was responding but now not sure, just saw the doc today, and he said that many people see the  most response between weeks 12 and 16, so fingers are still crossed!

                          Best of luck,

                          karen

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