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NCI in Bethesda following Ipi

Forums General Melanoma Community NCI in Bethesda following Ipi

  • Post
    Linda/Kentucky
    Participant

      Anybody have an opinion on NCI in Bethesda for stage IV?  This was the first place mentioned to us with initial diagnosis.  Just trying to line up a plan "C" following scans due to be done in 2 weeks.

      Anybody have an opinion on NCI in Bethesda for stage IV?  This was the first place mentioned to us with initial diagnosis.  Just trying to line up a plan "C" following scans due to be done in 2 weeks.

      Judging by the way my husband is feeling at this point at almost week 21 in the Ipi trial  I'm afraid there is going to be a plan "C".  Very strange how he has roller coastered from feeling fairly decent during the last several weeks to feeling this bad again.  I'm not going to give up on Ipi just yet but I am beginning to have some doubts about responding to it.

      Any information or guidance on next plan would be greatly appreciated.  He has done IL-2 and finished with Ipi.  He does have bone mets and having alot of pain from that.  Maybe some radiation for pain relief?  Also what pain med's has worked for others?  He has been lucky and only taken Ibuprofen 800mg. and an occasional Hydrocodone (doesn't like) but it's time for stronger now.  Thanks for any info. 

       

      Linda/Kentucky

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        emilypen
        Participant

          HI Linda,

          My husband has bone mets as well, he takes 60mg slow release morphine every 12hrs plus Advil, definitely helps. He also had a course of chemo ( did not work at all) and 5 sessions of radiation and that made a huge difference on the pain. He feels 80% less pain now that some of the bone mets have been radiated.

          Have you looked into this trial? http://clinicaltrials.gov/ct2/show/NCT01155453

          Our oncologist wanted him to do this before Ipi, as he thought it had a better chance for sustained outcome. If it doesn't work than Ipi would be our next option. He started last week and so far so good.

           

          Stay strong,

          Em

           

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          emilypen
          Participant

            HI Linda,

            My husband has bone mets as well, he takes 60mg slow release morphine every 12hrs plus Advil, definitely helps. He also had a course of chemo ( did not work at all) and 5 sessions of radiation and that made a huge difference on the pain. He feels 80% less pain now that some of the bone mets have been radiated.

            Have you looked into this trial? http://clinicaltrials.gov/ct2/show/NCT01155453

            Our oncologist wanted him to do this before Ipi, as he thought it had a better chance for sustained outcome. If it doesn't work than Ipi would be our next option. He started last week and so far so good.

             

            Stay strong,

            Em

             

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            Kevin from Atlanta
            Participant

              Hello Linda,

              I have tried a few pain meds.

              Lortox- Only when I had a big day, aka going to play Pokemon the card game. Friday nights with my son.

              Morphine and Hydro-cotin(sp)- really screwed my stomach up

              I have been on the fentayl patch for the past week, results are finally showing up. My stomach is doing fine so far but it feels like living in a fog. Hopefully that will work itself out. I also take 800 mgs of Ibprofen in the morning.

               

              I am on a wait and see on the Ipi. I recieved the 20th weeks scans last week. They were horrible. So in four more weeks I will get scans again and take it from there. There is a 10 to 20% of being a late responder. If I do any others treatments, I will not be able to continue Ipi. You need to throw that into your  into your timeline.

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              Kevin from Atlanta
              Participant

                Hello Linda,

                I have tried a few pain meds.

                Lortox- Only when I had a big day, aka going to play Pokemon the card game. Friday nights with my son.

                Morphine and Hydro-cotin(sp)- really screwed my stomach up

                I have been on the fentayl patch for the past week, results are finally showing up. My stomach is doing fine so far but it feels like living in a fog. Hopefully that will work itself out. I also take 800 mgs of Ibprofen in the morning.

                 

                I am on a wait and see on the Ipi. I recieved the 20th weeks scans last week. They were horrible. So in four more weeks I will get scans again and take it from there. There is a 10 to 20% of being a late responder. If I do any others treatments, I will not be able to continue Ipi. You need to throw that into your  into your timeline.

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