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an Ipilimumab success story with questions for past ipi trial people.
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an Ipilimumab success story with questions for past ipi trial people.

› Forums › General Melanoma Community › an Ipilimumab success story with questions for past ipi trial people.

  • Post
    • November 13, 2010 at 11:10 pm
    AndyD
    Participant

      I've been stage 4 for a year or two and started an ipi compassionate-use trial in June that finished in Aug. I'm happy to report that my body responded to the ipi – Yay! cheeky and my last PET scan showed tumor shrinkage in both my lungs and leg. I get scanned every 6 months and the trial will be repeated as necessary if the tumors begin to grow again.

      I've been stage 4 for a year or two and started an ipi compassionate-use trial in June that finished in Aug. I'm happy to report that my body responded to the ipi – Yay! cheeky and my last PET scan showed tumor shrinkage in both my lungs and leg. I get scanned every 6 months and the trial will be repeated as necessary if the tumors begin to grow again.

      If you've had the ipi trial before, I was wondering how you feel physically and mentally? I felt tired, cranky, and somewhat confused for at least two months after my last influsion. Then I started to feel great (like my old self), but that only lasted a few weeks and now I seem to be regressing again…super tired and crummy feeling angry. I've had my blood work done and my gland levels are all normal (like thyroid). Do you think it takes a long time to get past ipi side-effects? Or is this simply how cancer progression feels? Will I ever feel like this again? smiley

      Hope to hear your thoughts.

    Viewing 7 reply threads
    • Replies
        • November 14, 2010 at 3:52 pm
        W.
        Participant

          Andy,

          congrats on being an IPI-responder!

          I don't have experience with IPI myself and can't answer your questions. But I hope by bumping this thread back to the first page, other IPI warriors will see it and maybe answer…

          • November 14, 2010 at 3:52 pm
          W.
          Participant

            Andy,

            congrats on being an IPI-responder!

            I don't have experience with IPI myself and can't answer your questions. But I hope by bumping this thread back to the first page, other IPI warriors will see it and maybe answer…

            • November 16, 2010 at 6:34 pm
            Bruce in NH
            Participant

              Hi Andy,

              I completed the 10 week cycle of ipi infusions in August (stage 4 since December, 2008). Results were summarized as "nothing new, nothing grew". This is OK with me but hoping for remission. I found my physical and mental state fluctuated throughout the infusion process – some days were great, others I was fatigued and somewhat depressed. However, when compared to my experiences with Interferon, IL2 and bio-chemotherapies, the ipi side effects were minimal. I take 1 tablet (1 MG) of Lorazepam (aka Ativan) daily to help smooth over the rough edges. I'm not a fan of anti-depressants but I don't get as tired or edgy when taking it. I'm having a set of PET scans on Wednesday this week to see if my baseline has changed and whether I am a candidiate to continue the ipi trial. Will know more tomorrow.

              Hope you are doing OK and enjoying each day as a gift. Try not to dwell on the negative but plan for the future in a positive state of mind. Keep yourself busy too. I'm generally happier when I'm busy and spend less time thinking about where I've been than where I'm going next. I know the power of positive thinking is a cliche but with practice you can recover from most speed bumps in life. Good luck to you.

              Take care,

              Bruce in New Hampshire

              • November 16, 2010 at 6:34 pm
              Bruce in NH
              Participant

                Hi Andy,

                I completed the 10 week cycle of ipi infusions in August (stage 4 since December, 2008). Results were summarized as "nothing new, nothing grew". This is OK with me but hoping for remission. I found my physical and mental state fluctuated throughout the infusion process – some days were great, others I was fatigued and somewhat depressed. However, when compared to my experiences with Interferon, IL2 and bio-chemotherapies, the ipi side effects were minimal. I take 1 tablet (1 MG) of Lorazepam (aka Ativan) daily to help smooth over the rough edges. I'm not a fan of anti-depressants but I don't get as tired or edgy when taking it. I'm having a set of PET scans on Wednesday this week to see if my baseline has changed and whether I am a candidiate to continue the ipi trial. Will know more tomorrow.

                Hope you are doing OK and enjoying each day as a gift. Try not to dwell on the negative but plan for the future in a positive state of mind. Keep yourself busy too. I'm generally happier when I'm busy and spend less time thinking about where I've been than where I'm going next. I know the power of positive thinking is a cliche but with practice you can recover from most speed bumps in life. Good luck to you.

                Take care,

                Bruce in New Hampshire

                • November 16, 2010 at 8:48 pm
                Jim in Denver
                Participant

                  Hi Andy,

                  First, congratulations on your response – that sounds like a very strong and quick response to Ipi.  I have tried to learn as much about Ipi as possible the last several months, and one thing that is striking is how long the immune response can take to develop in some patients.  In fact, one study showed that as many of 25% of people who showed "progression" at 12 weeks later showed positive responses when measured later (at 6 months I believe).  So the stats on Ipi response are actually even better in some ways than the ones that have been widely quoted, and those who show progression or stable disease at 12 weeks need to know that that is not the end of the story by any means.

                  Amen to Bruce's comments.  I have completed 4 round of Ipi + Temador, and my 12 week scans showed (4 weeks ago) no progression with small reductions in size of small lung mets.  I am sure each of us who has received Ipi would give you different stories about side effects.  Mine is that I have had minimal side effects – rash and itch from Ipi after #4 infusion.  Temador give me headaches and mild fatigue.  What you call being "tired, cranky and confused" sound like me just getting older!  All joking aside, I guess you could say I have felt those things too, although to a very limited degree.  In my case it is difficult to say whether the effects were/are due to Ipi, Temador, or the combination.

                  I actually feel really good, and count myself very lucky.  I don't feel tired or crummy like you say you do.  I still have the rash and itch, though.  Are you feeling depressed?  Some patients seem to get mildly depressed, even if they are responding to treatment.  Will you go back to feeling the same way you did before you did Ipi?  If you did compassionate use, you may have been feeling some effects from prior treatments as well as disease progression.  You ask good questions, but I don't know if there are any good answers to be found here or from your Doc.

                  The strong immune response you are having, which is the reason why your tumors are shrinking, may also be causing other issues for you as well.  Maybe you should consult with your Doc and Study Nurse about your side effects and possible remedies.  My comments probably don't help much, but hopefully you will gradually feel better over time, although you may feel some down periods along the way.  Remember that your immune response will probably be long lived, which is generally a good thing, despite the side effects.

                  Best Wishes,

                  Jim

                  • November 16, 2010 at 8:48 pm
                  Jim in Denver
                  Participant

                    Hi Andy,

                    First, congratulations on your response – that sounds like a very strong and quick response to Ipi.  I have tried to learn as much about Ipi as possible the last several months, and one thing that is striking is how long the immune response can take to develop in some patients.  In fact, one study showed that as many of 25% of people who showed "progression" at 12 weeks later showed positive responses when measured later (at 6 months I believe).  So the stats on Ipi response are actually even better in some ways than the ones that have been widely quoted, and those who show progression or stable disease at 12 weeks need to know that that is not the end of the story by any means.

                    Amen to Bruce's comments.  I have completed 4 round of Ipi + Temador, and my 12 week scans showed (4 weeks ago) no progression with small reductions in size of small lung mets.  I am sure each of us who has received Ipi would give you different stories about side effects.  Mine is that I have had minimal side effects – rash and itch from Ipi after #4 infusion.  Temador give me headaches and mild fatigue.  What you call being "tired, cranky and confused" sound like me just getting older!  All joking aside, I guess you could say I have felt those things too, although to a very limited degree.  In my case it is difficult to say whether the effects were/are due to Ipi, Temador, or the combination.

                    I actually feel really good, and count myself very lucky.  I don't feel tired or crummy like you say you do.  I still have the rash and itch, though.  Are you feeling depressed?  Some patients seem to get mildly depressed, even if they are responding to treatment.  Will you go back to feeling the same way you did before you did Ipi?  If you did compassionate use, you may have been feeling some effects from prior treatments as well as disease progression.  You ask good questions, but I don't know if there are any good answers to be found here or from your Doc.

                    The strong immune response you are having, which is the reason why your tumors are shrinking, may also be causing other issues for you as well.  Maybe you should consult with your Doc and Study Nurse about your side effects and possible remedies.  My comments probably don't help much, but hopefully you will gradually feel better over time, although you may feel some down periods along the way.  Remember that your immune response will probably be long lived, which is generally a good thing, despite the side effects.

                    Best Wishes,

                    Jim

                    • November 16, 2010 at 10:57 pm
                    AndyD
                    Participant

                      Thank you for the responses W., Bruce and Jim., it makes me feel less alone in all this. I will echo your comments and say that ipi is slow acting…I didn't respond until after the treatment was over and then had a follow up scan 6 weeks later. During the treatment my tumors seemed to continue to grow, maybe less slowly. I was lucky and missed the rash and itch (I was crazy itchy on bio chemo to the point I checked myself into emergency one night at 3am for fear of ripping my flesh off lol). The side effects of ipi are certainly less than bio and IL2, but I'm still surprised how poorly I've felt some days (mainly near the end of the treatment). I'm generally OCD and busily doing 100 projects at once so when I find myself watching WW2 documentaries on netflix for 12 hours straight, I know something is up. hahaha.

                      I just wanted to add for other ipi trial people out there…I did not respond to bio-chemo or ILs…but did respond to ipi. Fingers are crossed that the response is durable.

                      Andy

                        • November 17, 2010 at 12:09 am
                        Jim in Denver
                        Participant

                          Andy, 

                          Here is a link to a webinar done last night by "the other" melanoma foundation.  It takes about 45 minutes, and is worth a listen.  It is by Dr. Jedd Wolchock from Memorial Sloan Kettering in NYC, who has worked with Ipilimumab since its very beginning in development, and knows as much as, if not more, than anyone about Ipi

                          Durability is discussed, and it seems like two years is a measuring point for durable response.  One other thing that struck me that Dr. Wolchock said is how if a person reponds the first time to Ipi, then it is almost certain that they will also respond to "reinduction" (another 4 rounds of treatment) if they later develop other tumors.  This is a long battle, my friend, and we need to know that there are options for treatment down the line.  Another one to watch is MDX1106, along with the T-cell Vaccine approach, both of which he mentions.

                          I am amazed you can stay up for 12 hours straight watching WWII documentaries – mus be another of those nasty side effects 🙂

                          Best,

                          Jim

                          • November 17, 2010 at 12:09 am
                          Jim in Denver
                          Participant

                            Andy, 

                            Here is a link to a webinar done last night by "the other" melanoma foundation.  It takes about 45 minutes, and is worth a listen.  It is by Dr. Jedd Wolchock from Memorial Sloan Kettering in NYC, who has worked with Ipilimumab since its very beginning in development, and knows as much as, if not more, than anyone about Ipi

                            Durability is discussed, and it seems like two years is a measuring point for durable response.  One other thing that struck me that Dr. Wolchock said is how if a person reponds the first time to Ipi, then it is almost certain that they will also respond to "reinduction" (another 4 rounds of treatment) if they later develop other tumors.  This is a long battle, my friend, and we need to know that there are options for treatment down the line.  Another one to watch is MDX1106, along with the T-cell Vaccine approach, both of which he mentions.

                            I am amazed you can stay up for 12 hours straight watching WWII documentaries – mus be another of those nasty side effects 🙂

                            Best,

                            Jim

                          • November 16, 2010 at 10:57 pm
                          AndyD
                          Participant

                            Thank you for the responses W., Bruce and Jim., it makes me feel less alone in all this. I will echo your comments and say that ipi is slow acting…I didn't respond until after the treatment was over and then had a follow up scan 6 weeks later. During the treatment my tumors seemed to continue to grow, maybe less slowly. I was lucky and missed the rash and itch (I was crazy itchy on bio chemo to the point I checked myself into emergency one night at 3am for fear of ripping my flesh off lol). The side effects of ipi are certainly less than bio and IL2, but I'm still surprised how poorly I've felt some days (mainly near the end of the treatment). I'm generally OCD and busily doing 100 projects at once so when I find myself watching WW2 documentaries on netflix for 12 hours straight, I know something is up. hahaha.

                            I just wanted to add for other ipi trial people out there…I did not respond to bio-chemo or ILs…but did respond to ipi. Fingers are crossed that the response is durable.

                            Andy

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