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Off ipi trial due to lymph node growth

Forums General Melanoma Community Off ipi trial due to lymph node growth

  • Post
    ipi in DC
    Participant

      Hey guys,

      Hey guys,

      Havent posted in a while but have kept up on things here. Today I met with the doctor at MD to go over scans from yesterday and today, very mixed results. Lungs stable (largest nodule 7mm out of a half dozen) brain and all other organs clear. One node (exterior iliac) has grown from 1.2 to 2.1 since last scans 8 weeks ago. Dr has looked at all the scans since last august and feels it is melanoma growth, so off the trial. He believes it is some resistant cells that the ipi could not take care of. As far as lungs they can not be sure if the cells are dead or alive that are showing in the scans but assume they may still be alive and have some resistant.

      We talked about a new drug they are trying in a stage 1 phase, but he is suggesting bio chemo IL-2,interferon,Vinblastin,Cistplastin, no dicarbazine due to I am on Temador now but will stop taking it for now anyways. The new drug has no history so he wants to use bio since my issues are lung and lymph.

      I know how nasty bio is but I want to hit it hard since its is basically localized for now.  

      Please fell free to put in your input good or bad, any help for the thought process helps, for sure anyone who has done this bio chemo and how you responded, how long you were taking it, where, and how are you know as far as side effects and any tips.

      By the way I was going to take cycle 11 today, so I have been on the trial about 8 months (can't complain no major growth and just a major rash and itching to deal with for side effects) I truly feel blessed to basically just be looking at a node (obviosly it way bigger than that)

      For those thinking of Ipi, i would do it all over again.

       

      Thanks,

      David

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    • Replies
        James from Sydney
        Participant

          Hi David

          Sounds like things have been working to some extent on Ippi. I have read some people with residual Tumors following treatment have had them Surgically removed. Have you considered this with the Illac node and maybe VATS for lung tumors.

          best wishes

          James

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          James from Sydney
          Participant

            Hi David

            Sounds like things have been working to some extent on Ippi. I have read some people with residual Tumors following treatment have had them Surgically removed. Have you considered this with the Illac node and maybe VATS for lung tumors.

            best wishes

            James

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            Jerry from Cape Cod
            Participant

              David,

              I'm a bit taken aback that the doctor is taking you off Ipi so quickly.  Unless the oncologist is absolutely positive that the lymph node is melanoma I'd ask to be put on hold for a cycle and set of scans.  I've had some that SOB's and the rate of reduction varied and occasionally there was a bit of growth. 

              Just had a lobectomy because one of the mets was blocking an airway and showed growth. The pathology showed that the tumor was regressing and there was a lot of necrosis and a lot of infection, including an infected lymph node between the upper and lower lobe.

              Unless there are other factors a wait for a scan cycle seems to make more sense for a known responder.  Also a factor would be the criteria of the trial

              I would rather have the lymph node removed surgically and watch the lung with regular CT scans. 

              Best regards,

              Jerry from Cape Cod

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                ipi in DC
                Participant
                  Hey jerry,
                  The node did grow a few months ago from nothing to the centimeter, he said he was 95% sure of melanoma growth. I also had a biopsy positvie nodule on lower back that did shrink to almost nothing, but I know temador has been known to help subq and not lungs. Just concerned with the growth amount in 8 weeks (almost 100%) of waiting around too long. He would like to leave the node for a control on anything else we do. Trial says any new growth or progression you are off trial.

                  Please continue to feel free to give your input, it helps me think it through.

                  Also thank you for being one of the main soldiers on the site, most people may not understand the time you guys dedicate

                  Thanks,
                  David

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                  swissie
                  Participant

                    Hi David,

                    So sorry to hear about your progression.
                    I just wanted to ask you something about your trial.
                    You say you are in cycle 11, do you mean that you were supposed to get your 11th shot of ipi???
                     

                    I thought that ipi is given every 3 weeks in the introduction phase and after that every 3 months.

                    You couldn't have 11 shots in 8 months time.

                    Good luck with everything,
                    Swissie

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                    ipi in DC
                    Participant
                      No, cycle 11of the trial which would have been 7 ipi and 11 temodar

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                      ipi in DC
                      Participant
                        No, cycle 11of the trial which would have been 7 ipi and 11 temodar

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                        swissie
                        Participant

                          Hi David,

                          So sorry to hear about your progression.
                          I just wanted to ask you something about your trial.
                          You say you are in cycle 11, do you mean that you were supposed to get your 11th shot of ipi???
                           

                          I thought that ipi is given every 3 weeks in the introduction phase and after that every 3 months.

                          You couldn't have 11 shots in 8 months time.

                          Good luck with everything,
                          Swissie

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                          ipi in DC
                          Participant
                            Hey jerry,
                            The node did grow a few months ago from nothing to the centimeter, he said he was 95% sure of melanoma growth. I also had a biopsy positvie nodule on lower back that did shrink to almost nothing, but I know temador has been known to help subq and not lungs. Just concerned with the growth amount in 8 weeks (almost 100%) of waiting around too long. He would like to leave the node for a control on anything else we do. Trial says any new growth or progression you are off trial.

                            Please continue to feel free to give your input, it helps me think it through.

                            Also thank you for being one of the main soldiers on the site, most people may not understand the time you guys dedicate

                            Thanks,
                            David

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                          Jerry from Cape Cod
                          Participant

                            David,

                            I'm a bit taken aback that the doctor is taking you off Ipi so quickly.  Unless the oncologist is absolutely positive that the lymph node is melanoma I'd ask to be put on hold for a cycle and set of scans.  I've had some that SOB's and the rate of reduction varied and occasionally there was a bit of growth. 

                            Just had a lobectomy because one of the mets was blocking an airway and showed growth. The pathology showed that the tumor was regressing and there was a lot of necrosis and a lot of infection, including an infected lymph node between the upper and lower lobe.

                            Unless there are other factors a wait for a scan cycle seems to make more sense for a known responder.  Also a factor would be the criteria of the trial

                            I would rather have the lymph node removed surgically and watch the lung with regular CT scans. 

                            Best regards,

                            Jerry from Cape Cod

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                            jag
                            Participant

                              David, I have been through biochemotherapy, and it is rough stuff, I kind of lean towards Jerry and James to be honest.  Sounds like your immune system is working pretty well, maybe going off of the Temodar itself will let the IPI finish up the job.  I would be pretty surprised if it were the effect of the Temodar getting rid of the subqs-actually haven't seen much success with people being treated with Temodar only on this board.  Odds are much higher that it is the IPI.

                              If anything, consider straight IL2.  Rough treatment, but less side effects in the long run.  If you are going for biochemo, or Interleukin 2, definitely look into sites that have treated many people before. If you are in DC, the NIH is pretty close by.  I have recieved Biochemo at Sloan Kettering, who I would highly reccomend.  MD Anderson is also a biochemo center, that has given lots of it(they may have invented it)

                               Any chance your doctor can get a piece of the lymphnode to see if your immune system is actually attacking the tumor?

                              Best wishes.

                              John

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                                ipi in DC
                                Participant
                                  Hey john, thanks for the input, I am a patient at MD with Dr Bedikian who was one of the original guys on bio. He seosnt want to cutbit out because we still have remainder of nodules in lungs and lower back. So he wants to see about all of them at the same time.

                                  As far as the bio please tell me more of yours, how long, side effect long and short term and the results you had

                                  David

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                                  jag
                                  Participant

                                    Well, Bio seems like a distant memory to me at this point.  Basically this, First they put an IV port in you, and you need one of these for each cycle-just like IL2.  You are hospitalized for a week and at least for me, I was sedated to the point of not remembering much, the first round.  Anyway, the first round was no big deal, It isn't until round 3 or 4 that the cumulative effects kick in.  By then, I was vomiting nearly everyday through treatments, and had lost a lot of weight by the end of the treatment I had lost 40lbs and was anemic as hell, between rounds 4-5 and 5-6, I got a septic fever with hemolytic anemia and needed to be readmitted for transfusions.  Needless to say, I had 90% shrinkage after the first 2 rounds and they wanted me to keep going to see if I would get rid of it completely. Long term side effects-at this point virtually nil.  I actually hiked up the cable trail to the top of Half Dome in Yosemite Park in a day nearly 1 month after round 6.  Unfortunately all of the tumor material didn't resolve and I had to continue with further treatment (it is all noted in my profile)  That said, if you do go the biochemo route, I have seen people on this board resolve 100%, the chances of long term remission can be lower than IL2, but the response rate is much higher.  Basically, it bought me some quality time besides the nasty side effects.  Oh yeah, it can definitely render you sterile.  My wife just underwent embryo transfer from the sperm I originally stored-so far so good.

                                    Good luck with whatever you choose, and God Bless

                                    John.

                                     

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                                    jag
                                    Participant

                                      Well, Bio seems like a distant memory to me at this point.  Basically this, First they put an IV port in you, and you need one of these for each cycle-just like IL2.  You are hospitalized for a week and at least for me, I was sedated to the point of not remembering much, the first round.  Anyway, the first round was no big deal, It isn't until round 3 or 4 that the cumulative effects kick in.  By then, I was vomiting nearly everyday through treatments, and had lost a lot of weight by the end of the treatment I had lost 40lbs and was anemic as hell, between rounds 4-5 and 5-6, I got a septic fever with hemolytic anemia and needed to be readmitted for transfusions.  Needless to say, I had 90% shrinkage after the first 2 rounds and they wanted me to keep going to see if I would get rid of it completely. Long term side effects-at this point virtually nil.  I actually hiked up the cable trail to the top of Half Dome in Yosemite Park in a day nearly 1 month after round 6.  Unfortunately all of the tumor material didn't resolve and I had to continue with further treatment (it is all noted in my profile)  That said, if you do go the biochemo route, I have seen people on this board resolve 100%, the chances of long term remission can be lower than IL2, but the response rate is much higher.  Basically, it bought me some quality time besides the nasty side effects.  Oh yeah, it can definitely render you sterile.  My wife just underwent embryo transfer from the sperm I originally stored-so far so good.

                                      Good luck with whatever you choose, and God Bless

                                      John.

                                       

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                                      ipi in DC
                                      Participant
                                        Hey john, thanks for the input, I am a patient at MD with Dr Bedikian who was one of the original guys on bio. He seosnt want to cutbit out because we still have remainder of nodules in lungs and lower back. So he wants to see about all of them at the same time.

                                        As far as the bio please tell me more of yours, how long, side effect long and short term and the results you had

                                        David

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                                      jag
                                      Participant

                                        David, I have been through biochemotherapy, and it is rough stuff, I kind of lean towards Jerry and James to be honest.  Sounds like your immune system is working pretty well, maybe going off of the Temodar itself will let the IPI finish up the job.  I would be pretty surprised if it were the effect of the Temodar getting rid of the subqs-actually haven't seen much success with people being treated with Temodar only on this board.  Odds are much higher that it is the IPI.

                                        If anything, consider straight IL2.  Rough treatment, but less side effects in the long run.  If you are going for biochemo, or Interleukin 2, definitely look into sites that have treated many people before. If you are in DC, the NIH is pretty close by.  I have recieved Biochemo at Sloan Kettering, who I would highly reccomend.  MD Anderson is also a biochemo center, that has given lots of it(they may have invented it)

                                         Any chance your doctor can get a piece of the lymphnode to see if your immune system is actually attacking the tumor?

                                        Best wishes.

                                        John

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