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4th treatment on ipi and a question

Forums Cutaneous Melanoma Community 4th treatment on ipi and a question

  • Post
    ValinMtl
    Participant

      Well, I did a beautiful wipeout in front of the hospital, tripping on my shawl…hitting my chest on a jutting out cement pillar, then landing on the knee, of course the monster leg with lymphedema. I certainly had loads of attentive people around me, embarrassing plus! As I was falling all I could think of was please don't cause any delays in treatment but I was able to make it to the oncology ward in a wheelchair!. So I sit here very sore today.

      Well, I did a beautiful wipeout in front of the hospital, tripping on my shawl…hitting my chest on a jutting out cement pillar, then landing on the knee, of course the monster leg with lymphedema. I certainly had loads of attentive people around me, embarrassing plus! As I was falling all I could think of was please don't cause any delays in treatment but I was able to make it to the oncology ward in a wheelchair!. So I sit here very sore today.

      Had my 4th treatment yesterday.  The good news, doctor is seeing a noticeable difference in the tumors, some are actually drying up and the purplish motling on the leg is diminishing, now I have to wait for a scan.  I almost didn't get the treatment as my platelets are very low but since it was my 4th treatment and not 3rd the doctor decided to go ahead with it (he warned me no falls, no aspirins)…will now have to visit CLSC about a mile from my house for blood tests each week until platelets improve (beats travelling to the hospital which is about a 1 1/2-hour drive).

      Now my question for the ipi warriiors: I have now had 4 treatments,and a scan in 2 weeks and another scan 12 weeks after that, at that point they decide whether there is a need to continue, or not (wouldn't that be nice) OR of course, if it doesn't work then on to another treatment.  There is a 3-month wait between ipi rounds, is this the norm?

      So, just to update those planning on ipilimumab..cutaneous tumors have certainly stopped spreading on my leg (I had 100s after waiting about 5 months for trial to come to Montreal), most are not raised but rather 'flat' now, and some are dried up (yehh!). Praying I get good results with my scans. I really haven't had any significant side effects, a few slight headaches in the beginning, a touch of fatique and inappropriate gas.

       

      Val

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        Jim in Denver
        Participant

          Hi Val,

          Thanks for posting – sorry to hear about your mishap, but at least you wiped out in front of the hospital!  Hope the bumps and bruises don't slow you down much, and hope that you feel better soon.

          I know first hand about waiting for scans, and want to offer you some positive feedback on your comments.  If your visible tumors have stopped growing or are shrinking, then the chances are good that your have developed an immune response from Ipi.  As you may know, it is not unusual for recipients to show an inflammatory response to Ipi initially (tumors appear to grow), although it is imposssible to distinguish between inflammation and progression.  In my case, the one visible tumor increase slightly in size until the 3rd treatment, and showed slight reduction after the 4th treatment, which was a hopeful sign for me before doing scans 3 weeks after my 4th infusion. My scans showed no progression with slight decrease in size of numerous very small lung tumors.

          The point here is that both your scans in 2 weeks and the ones in 12 weeks are important.  Like one of my Docs said, mel is like a speeding freight train – first you want to slow it down, then stop it, and finally reverse it.  Ipi can actually reverse the disease, but stopping it isn't a bad thing either!  The criteria for not showing progression in my trial is showing no increase in measurable aggregate tumor size of 25%, which allows for some lingering inflammation to be accomodated in determining efficacy. 

          Regarding a 3 month interval between rounds, I am now on that schedule myself, with scans every 8 weeks.  I receive Temador every 4 weeks as well.  The 12 week interval is apparently common for the "maintenence" phase, the first 4 cycles being the "induction" phase.  There is not enough data to conclude whether continued maintenence of Ipi improves either the response rate or response durablilty, although clearly that is being researched.  Some of the earliest trials had 4 cycles with no maintenence, while some more recent trials do include maintenence.  I guess the idea behind maintenence is pretty simple – if its working, keep doing it!

          There are other points to be made about Ipi, some of which appear below in the "Ipilimumab Success…." post.  One is that it can take time for an immune response to develop, but it is good when it develops sooner.  Some recipients actually show disease progression after 4 rounds, but a significant proportion of them (20-25%) later show a develpoed immune response.  It is important to realize that the immmune response develops at different rates in different patients, and when a response develops it should persist for a fairly long time, even without additional infusions.  Another point is that if a person has developed a response to Ipi and then later shows some progression (new tumors or growth in existing ones), then they should also respond positively to"reinduction", or another 4 courses of Ipi – if it worked once, it will probably also work again.

          Hope my comments are helpful and best wishes to you on your upcoming scans.

          Best,

          Jim

           

          Click on this link for a presentation this week by one of the developers of Ipilimumab, Dr. Jedd Wolchock from Memorial Sloan Kettering in NYC (it runs about 45 minutes):

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          Jim in Denver
          Participant

            Hi Val,

            Thanks for posting – sorry to hear about your mishap, but at least you wiped out in front of the hospital!  Hope the bumps and bruises don't slow you down much, and hope that you feel better soon.

            I know first hand about waiting for scans, and want to offer you some positive feedback on your comments.  If your visible tumors have stopped growing or are shrinking, then the chances are good that your have developed an immune response from Ipi.  As you may know, it is not unusual for recipients to show an inflammatory response to Ipi initially (tumors appear to grow), although it is imposssible to distinguish between inflammation and progression.  In my case, the one visible tumor increase slightly in size until the 3rd treatment, and showed slight reduction after the 4th treatment, which was a hopeful sign for me before doing scans 3 weeks after my 4th infusion. My scans showed no progression with slight decrease in size of numerous very small lung tumors.

            The point here is that both your scans in 2 weeks and the ones in 12 weeks are important.  Like one of my Docs said, mel is like a speeding freight train – first you want to slow it down, then stop it, and finally reverse it.  Ipi can actually reverse the disease, but stopping it isn't a bad thing either!  The criteria for not showing progression in my trial is showing no increase in measurable aggregate tumor size of 25%, which allows for some lingering inflammation to be accomodated in determining efficacy. 

            Regarding a 3 month interval between rounds, I am now on that schedule myself, with scans every 8 weeks.  I receive Temador every 4 weeks as well.  The 12 week interval is apparently common for the "maintenence" phase, the first 4 cycles being the "induction" phase.  There is not enough data to conclude whether continued maintenence of Ipi improves either the response rate or response durablilty, although clearly that is being researched.  Some of the earliest trials had 4 cycles with no maintenence, while some more recent trials do include maintenence.  I guess the idea behind maintenence is pretty simple – if its working, keep doing it!

            There are other points to be made about Ipi, some of which appear below in the "Ipilimumab Success…." post.  One is that it can take time for an immune response to develop, but it is good when it develops sooner.  Some recipients actually show disease progression after 4 rounds, but a significant proportion of them (20-25%) later show a develpoed immune response.  It is important to realize that the immmune response develops at different rates in different patients, and when a response develops it should persist for a fairly long time, even without additional infusions.  Another point is that if a person has developed a response to Ipi and then later shows some progression (new tumors or growth in existing ones), then they should also respond positively to"reinduction", or another 4 courses of Ipi – if it worked once, it will probably also work again.

            Hope my comments are helpful and best wishes to you on your upcoming scans.

            Best,

            Jim

             

            Click on this link for a presentation this week by one of the developers of Ipilimumab, Dr. Jedd Wolchock from Memorial Sloan Kettering in NYC (it runs about 45 minutes):

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              ValinMtl
              Participant

                Thanks for the input Jim, you've put any concerns I have to rest.  Will definitely look at the presentation tomorrow morning when I'm feeling better.  Val

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                ValinMtl
                Participant

                  Thanks for the input Jim, you've put any concerns I have to rest.  Will definitely look at the presentation tomorrow morning when I'm feeling better.  Val

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                lhaley
                Participant

                  Val,

                  Ouch!!  I hope you aren't bruised tomorrow!

                  Sounds like your having a response! Can't wait to hear good news after your scans!   Did the Doctor say why he thought your platelet counts were down?

                  Linda

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                    ValinMtl
                    Participant

                      Thanks Linda.  I'm really aching so rested all day today.  The strangest sharp pain in my chest but I really think I fell on a corner of the cement right there.

                      Doctor didn't mention why my platelets were so low but I did look at my blood results for the last 4 treatments…each time they dropped significantly.  I had started out near the top of the high end range now I'm down way below low end.  From what I just saw on the internet, it can be related to treatment. So, I plan to rest a lot in the next few days and eat very well. They are keeping an eye on me with the first blood test booked at the CLSC on Tuesday.  Me too, I'm anxious to get the scan results..hopefully that small lesion in lung will have disappeared or lessened..but as Jim advises sometimes the response can be slow getting started.

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                      ValinMtl
                      Participant

                        Thanks Linda.  I'm really aching so rested all day today.  The strangest sharp pain in my chest but I really think I fell on a corner of the cement right there.

                        Doctor didn't mention why my platelets were so low but I did look at my blood results for the last 4 treatments…each time they dropped significantly.  I had started out near the top of the high end range now I'm down way below low end.  From what I just saw on the internet, it can be related to treatment. So, I plan to rest a lot in the next few days and eat very well. They are keeping an eye on me with the first blood test booked at the CLSC on Tuesday.  Me too, I'm anxious to get the scan results..hopefully that small lesion in lung will have disappeared or lessened..but as Jim advises sometimes the response can be slow getting started.

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                      lhaley
                      Participant

                        Val,

                        Ouch!!  I hope you aren't bruised tomorrow!

                        Sounds like your having a response! Can't wait to hear good news after your scans!   Did the Doctor say why he thought your platelet counts were down?

                        Linda

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                        Sharyn
                        Participant

                          Oh Val, you poor thing! Tripping up like that! The construction at the front entrance has been going on for months and months! When do they expect to have it finished? It is a real obstacle for the patients, especially those who have limited mobility! Anyway, I hope you didn't get too bruised up.

                          I don't think there is necessarily a 3-mo wait after the first 12 weeks. My understanding is that once the resuts of the 12 week scan are in, then they would decide if you'd go right back on it again. That's the re-induction phase, and Dr. M has to recommend it and BMS has to approve it. If you're not responding, or if you have NED, then you go into the Maintenance Phase, which is wait 12 weeks and scan again.

                          I'll be back in Mtl next Wed night, staying at Opus again (where else?), but we're not leaving until Sat morning — to go to Las Vegas for 4 days, then to Florida for a week, then back to Mtl on Dec 7th, scan on the 8th, and then fly home that night. Are you still doing Bridge on Thursdays? If so, drop up and see me, If not, I'll call. Jim will be with me this time.

                          Hope to see you next week!

                          Hugs

                          Sharyn

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                          Sharyn
                          Participant

                            Oh Val, you poor thing! Tripping up like that! The construction at the front entrance has been going on for months and months! When do they expect to have it finished? It is a real obstacle for the patients, especially those who have limited mobility! Anyway, I hope you didn't get too bruised up.

                            I don't think there is necessarily a 3-mo wait after the first 12 weeks. My understanding is that once the resuts of the 12 week scan are in, then they would decide if you'd go right back on it again. That's the re-induction phase, and Dr. M has to recommend it and BMS has to approve it. If you're not responding, or if you have NED, then you go into the Maintenance Phase, which is wait 12 weeks and scan again.

                            I'll be back in Mtl next Wed night, staying at Opus again (where else?), but we're not leaving until Sat morning — to go to Las Vegas for 4 days, then to Florida for a week, then back to Mtl on Dec 7th, scan on the 8th, and then fly home that night. Are you still doing Bridge on Thursdays? If so, drop up and see me, If not, I'll call. Jim will be with me this time.

                            Hope to see you next week!

                            Hugs

                            Sharyn

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                              ValinMtl
                              Participant

                                Hi Sharyn

                                It will be rather nice to be on sabbatical for a while (as long as the ipi is working for both of us…and let's just say a prayer on that one!)  Really sore today and a touch dizzy (might be the platelet situation)..so hubby read the riot act and told me I couldn't drive into Montreal today for bridge..I didn't argue, I'm taking it easy.  BUT I will be back there next week and will do my utmost to drop by for a little visit, always nice to see you.

                                I'm so jealous about Vegas but I'm married to a non-traveller..the only reason he goes to Florida is for the bluegrass! Thank goodness, he's a passionate musician unlike his tone deaf wife, it gets him there!  Val

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                                ValinMtl
                                Participant

                                  Hi Sharyn

                                  It will be rather nice to be on sabbatical for a while (as long as the ipi is working for both of us…and let's just say a prayer on that one!)  Really sore today and a touch dizzy (might be the platelet situation)..so hubby read the riot act and told me I couldn't drive into Montreal today for bridge..I didn't argue, I'm taking it easy.  BUT I will be back there next week and will do my utmost to drop by for a little visit, always nice to see you.

                                  I'm so jealous about Vegas but I'm married to a non-traveller..the only reason he goes to Florida is for the bluegrass! Thank goodness, he's a passionate musician unlike his tone deaf wife, it gets him there!  Val

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