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Ipi after Bio Chemo/IL2—Looking for insight

Forums General Melanoma Community Ipi after Bio Chemo/IL2—Looking for insight

  • Post
    Napa K
    Participant

    I visit often, and rarely post but would very much appreciate insight and feedback.  I am (as of later this morning) an 8 year survivor of stage IV melanoma.  Early on I was treated with bio chemo + 2 years of IL2 pulse maintenance and managed to remain disease free until 2009.  Since then I have been waging war against a relapse that has once again reared it's ugly head.  I have had surgeries and did 10 months of PLX and the question is "now what".

    I visit often, and rarely post but would very much appreciate insight and feedback.  I am (as of later this morning) an 8 year survivor of stage IV melanoma.  Early on I was treated with bio chemo + 2 years of IL2 pulse maintenance and managed to remain disease free until 2009.  Since then I have been waging war against a relapse that has once again reared it's ugly head.  I have had surgeries and did 10 months of PLX and the question is "now what".  My relapse is very localized at this point with one deep lesion, high in my axilla, nearly at my neck level and thus far, my disease has behaved in a fairly slow growing pattern.  The lesion is judged to be resectable but tricky and I recently had surgery in that area. Of course the other obvious option is Ipi. The only hiccup with this is that I have had a tremendously difficult time with every systemic treatment thus far (chemo, IL2, PLX).  If there is a side effect, it seems to manage to find me and in great proportions and the thought of going down this road again scares the —-out of me.  That said, if any of you out there have experiences that were rough with bio chemo/IL2 but have been easier with Ipi, I could REALLY stand to hear from you right now!  I am a mom of two (9/10) that has missed the last two summers and we are all in desperate need of a few months with strong mom back in action and able to participate in a long planned and much needed family  trip.  In my best guess, this will not be the case if Ipi is our choice.  Please share any good Ipi experiences you may have and any other insight. Thanks much and be well!

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  • Replies
      FormerCaregiver
      Participant

      Side effects of systemic treatments can certainly be a problem. I have read that surgery is
      the best option, as it reduces the tumour burden. If you decide against surgery there is the
      possibility of radiation treatment but of course, this has side effects of its own.

      I wonder if GM-CSF (Leukine) would be suitable for you? Not sure of the side effects of
      Leukine compared to Yervoy (ipi), but a number of people here have tried them.
      Perhaps they could give us their opinions?

      Hope this helps.

      Frank from Australia

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      FormerCaregiver
      Participant

      Side effects of systemic treatments can certainly be a problem. I have read that surgery is
      the best option, as it reduces the tumour burden. If you decide against surgery there is the
      possibility of radiation treatment but of course, this has side effects of its own.

      I wonder if GM-CSF (Leukine) would be suitable for you? Not sure of the side effects of
      Leukine compared to Yervoy (ipi), but a number of people here have tried them.
      Perhaps they could give us their opinions?

      Hope this helps.

      Frank from Australia

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      premedy
      Participant

      I say go for the vacation.  I just finished a cycle (1 infusion every 3 weeks for a total of 4 infusions).  For the first 2 infusions or so the only side effects I had were a little bit of fatigue and itchy skin.  Certaintly nothing that prevented me from working or would prevent me from having fun on a vacation.  After the 3rdth infusion I did get colitis but it steroids worked pretty well for that. 

      pat

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      premedy
      Participant

      I say go for the vacation.  I just finished a cycle (1 infusion every 3 weeks for a total of 4 infusions).  For the first 2 infusions or so the only side effects I had were a little bit of fatigue and itchy skin.  Certaintly nothing that prevented me from working or would prevent me from having fun on a vacation.  After the 3rdth infusion I did get colitis but it steroids worked pretty well for that. 

      pat

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      KatyWI
      Participant

      Here were my side effects with ipi:

       

       

      Long list, huh?  I'm exaggerating a little; I did have a few days of rash and am having a bit of hair shedding right now.

      I did not have as bad a time with IL-2 as some people, but IL-2 is horribly difficult for everyone.  Ipi can have some nasty side effects, but they are much less common and are more often readily managed.

      I would wager that you would be able to do ipi and still have a wonderful trip.  Of course, cutting the damn thing out is a good option too…one I chose after a round of Ipi.

      Good luck with whatever you decide!

      KatyWI

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      KatyWI
      Participant

      Here were my side effects with ipi:

       

       

      Long list, huh?  I'm exaggerating a little; I did have a few days of rash and am having a bit of hair shedding right now.

      I did not have as bad a time with IL-2 as some people, but IL-2 is horribly difficult for everyone.  Ipi can have some nasty side effects, but they are much less common and are more often readily managed.

      I would wager that you would be able to do ipi and still have a wonderful trip.  Of course, cutting the damn thing out is a good option too…one I chose after a round of Ipi.

      Good luck with whatever you decide!

      KatyWI

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      Kelley5474
      Participant
      I’am starting ipi next week. I was on BRAF which was shrinking my tumors with no side effects, but four brain mets showed up. So they took me off of it. They suggested ipi. Although I’m worried about the side effects, they are manageable. I’ll post my progress and if I have any problems with the treatment.

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      Kelley5474
      Participant
      I’am starting ipi next week. I was on BRAF which was shrinking my tumors with no side effects, but four brain mets showed up. So they took me off of it. They suggested ipi. Although I’m worried about the side effects, they are manageable. I’ll post my progress and if I have any problems with the treatment.

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        Vermont_Donna
        Participant

        Hi,

        I did 7 months of Leukine and worked through it….had itchy huge welts at the injection site ( a sign your body is reacting, so its good)…I took benedryl and tylenol, and iced the injection site before the injections.

        ( I also did Interferon for 11 months prior to Leukine and had intense fatigue, and didnt work. )

        I just completed four rounds of Ipi in February 2011. I had some fatigue, some nausea and a non itchy rash after dose 4. I chose not to work when I started Ipi as I didnt know what side effects I would have and I have poorly healing wounds (11 months of open wounds I apply medicine too and badage daily, and take narcotics for the pain).

        Good luck with your decision making and enjoy the summer with your family!! Congrats on 8 years of NED, and so sorry that melanoma has reared its ugly head again.

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Hi,

        I did 7 months of Leukine and worked through it….had itchy huge welts at the injection site ( a sign your body is reacting, so its good)…I took benedryl and tylenol, and iced the injection site before the injections.

        ( I also did Interferon for 11 months prior to Leukine and had intense fatigue, and didnt work. )

        I just completed four rounds of Ipi in February 2011. I had some fatigue, some nausea and a non itchy rash after dose 4. I chose not to work when I started Ipi as I didnt know what side effects I would have and I have poorly healing wounds (11 months of open wounds I apply medicine too and badage daily, and take narcotics for the pain).

        Good luck with your decision making and enjoy the summer with your family!! Congrats on 8 years of NED, and so sorry that melanoma has reared its ugly head again.

        Vermont_Donna, stage 3a

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      Kelley5474
      Participant
      One week after ipi and I’m still feeling good. I’ve had a few headaches and been a little tired, that may not even be from the drug. But I’m still going to let my dr. know about it.

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      Kelley5474
      Participant
      One week after ipi and I’m still feeling good. I’ve had a few headaches and been a little tired, that may not even be from the drug. But I’m still going to let my dr. know about it.

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