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After Ipi trial new tumors

Forums General Melanoma Community After Ipi trial new tumors

  • Post
    Karen wife of Phil
    Participant

    My husband and I have been lurking in this community for quite awhile gleaning much needed information and inspiration. He has actually posted a few times but has had trouble recently with passwords…not very technically savvy I'm afraid. Anyway, we need some input on what is happening with him right now.

    My husband and I have been lurking in this community for quite awhile gleaning much needed information and inspiration. He has actually posted a few times but has had trouble recently with passwords…not very technically savvy I'm afraid. Anyway, we need some input on what is happening with him right now.

    In Sept. of 2008 he was diagnosed stage IV with MUP. He had a lemon sized tumor in his right lung which has not changed since then. He has had tumors removed from near his lower spine and several from his intestines. On Nov. 4 he finished his final dose of compassionate trial of Ipi. The next day we ended up back at the cancer center for an emergency CT scan because of pain in his stomach. They found a new intussusception  (folding over of the intestine) which in him usually indicates new tumors. The surgeon who also read the CT saw some things on the other side of the abdomen. As is usual with surgeons he wants to cure with the scalpel. We feel this may be the progression of the tumors before the regression. We are thinking if he can deal with the pain, it might be prudent to take a watch and see attitude. Phil has had so many abdominal surgeries that this is the last thing he wants to do. Has anyone else had a pretty severe progression and then a regression? We really would like some input from anyone who has dealt with this. This board has been such a wealth of info…we so appreciate everyone here!

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  • Replies
      Cate
      Participant

      I'm so sorry for your loss.  What a beautiful tribute to Buddy.

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      Cate
      Participant

      I'm so sorry for your loss.  What a beautiful tribute to Buddy.

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        Cate
        Participant

        I am so sorry.  Some how my post was added to the wrong inquiry.

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        Cate
        Participant

        I am so sorry.  Some how my post was added to the wrong inquiry.

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      Fen
      Participant

      Karen – I don't have any experience with ipi, but what does your onc say?  Is he/she willing to do a trial?  I see Phil as done IL-2 and I think there are some trials combining the two.  Just a suggestion and a hope that when your message moves up more people will notice and respond.

      Fen

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      Fen
      Participant

      Karen – I don't have any experience with ipi, but what does your onc say?  Is he/she willing to do a trial?  I see Phil as done IL-2 and I think there are some trials combining the two.  Just a suggestion and a hope that when your message moves up more people will notice and respond.

      Fen

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      Jim in Denver
      Participant

      Hi Karen,

      Ipi treatment has a range of response rates, degree of response, as well as the timing of response.  It is important to know that sometimes the response to Ipi is very slow, and progression after 4 infusions does not mean that there will be no response.  As you point out, some tumors increase in size during the 4 cycles, which can be caused by inflammatory response to Ipi.  Doctors cannot easily distinguish between progression and inflammation.  So increasing tumor size during the first 4 cycles is not uncommon, but "severe" increase might indicate that your husband is progressing beyond the criteria the study uses to define progression. 

      In my case, the study defines progress as increase in aggregate tumor size (total of all measurable tumors) of 25% or more.  That figure is somewhat arbitrary, but I think the idea is to allow for some inflammation before determining that there is no immune response developing.  It is possible to develop an immune response after the first scans, and as many as 25% of patients who show prgression do so according to at least one study.  I suppose it does not help a lot to say that it may be too early to tell if your husband will respond to Ipi, but that may be the case.

      You probably have to reckon with more surgery, although it would make sense to involve your Oncologist in that decision in addition to your surgeon.  The Onc administering the Ipi would do his/her own scans as part of trial protocol – have those been done yet?  I have no experience with intestinal tumors or surgery – mine are all in my lungs and are "unresectable", although I also developed two small surface tumors (chest and leg) before begininng Ipi, one of which was removed.  The other one was not removed to use it an indicatior of whether Ipi is working or not.  I guess I would want more than one opinion if I were in your husband's situation regarding further surgery, and would involve the Oncologist.

      Don't know if this helps at all, but sending along best wishes to both of you.

      Best,

      Jim

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      Jim in Denver
      Participant

      Hi Karen,

      Ipi treatment has a range of response rates, degree of response, as well as the timing of response.  It is important to know that sometimes the response to Ipi is very slow, and progression after 4 infusions does not mean that there will be no response.  As you point out, some tumors increase in size during the 4 cycles, which can be caused by inflammatory response to Ipi.  Doctors cannot easily distinguish between progression and inflammation.  So increasing tumor size during the first 4 cycles is not uncommon, but "severe" increase might indicate that your husband is progressing beyond the criteria the study uses to define progression. 

      In my case, the study defines progress as increase in aggregate tumor size (total of all measurable tumors) of 25% or more.  That figure is somewhat arbitrary, but I think the idea is to allow for some inflammation before determining that there is no immune response developing.  It is possible to develop an immune response after the first scans, and as many as 25% of patients who show prgression do so according to at least one study.  I suppose it does not help a lot to say that it may be too early to tell if your husband will respond to Ipi, but that may be the case.

      You probably have to reckon with more surgery, although it would make sense to involve your Oncologist in that decision in addition to your surgeon.  The Onc administering the Ipi would do his/her own scans as part of trial protocol – have those been done yet?  I have no experience with intestinal tumors or surgery – mine are all in my lungs and are "unresectable", although I also developed two small surface tumors (chest and leg) before begininng Ipi, one of which was removed.  The other one was not removed to use it an indicatior of whether Ipi is working or not.  I guess I would want more than one opinion if I were in your husband's situation regarding further surgery, and would involve the Oncologist.

      Don't know if this helps at all, but sending along best wishes to both of you.

      Best,

      Jim

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        Karen wife of Phil
        Participant

        Thanks, Jim, for the input. Phil does have a tumor in his lung, the one used to diagnose the melanoma, that is also unresectable, and for the first time showed some enlarging, which the Onc thinks is due to the ipi. We do have an appointment with him on Tues. and he should be able to give us some more info. And since Phil is not in horrible pain and there doesn't appear to be any blockage, I am fairly confident we will take a "wait and see" stance.  I'm banking on Phil being a slow responder, and would like to give his body a chance to do its work.

        Thanks,

        Karen

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        Karen wife of Phil
        Participant

        Thanks, Jim, for the input. Phil does have a tumor in his lung, the one used to diagnose the melanoma, that is also unresectable, and for the first time showed some enlarging, which the Onc thinks is due to the ipi. We do have an appointment with him on Tues. and he should be able to give us some more info. And since Phil is not in horrible pain and there doesn't appear to be any blockage, I am fairly confident we will take a "wait and see" stance.  I'm banking on Phil being a slow responder, and would like to give his body a chance to do its work.

        Thanks,

        Karen

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