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Ipi

  • Post
    Linda/Kentucky
    Participant

    Just wondering about those of you who have finished the Ipi treatments how has your LDH have been?  My husband is at week 17 and we received his lab work yesterday and it had been going up since taking IL-2 but after his 3rd Ipi infusion his LDH was 1054 and yesterday 5 weeks after final tx.it was 1304 I know this is very high.  Clinical trial nurse said not to worry she has seen this happen before.  Starting to feel really discouraged.  He also found out he was anemic HGB 8.8 so we will try to find out the source of the bleeding could be from taking alot of Ib

    Just wondering about those of you who have finished the Ipi treatments how has your LDH have been?  My husband is at week 17 and we received his lab work yesterday and it had been going up since taking IL-2 but after his 3rd Ipi infusion his LDH was 1054 and yesterday 5 weeks after final tx.it was 1304 I know this is very high.  Clinical trial nurse said not to worry she has seen this happen before.  Starting to feel really discouraged.  He also found out he was anemic HGB 8.8 so we will try to find out the source of the bleeding could be from taking alot of Ibuprofen but it's the only thing that gives relief from aches.  Again I'm afraid he is not going to be a responder, but……it does take longer sometimes.  His scans showed no new mets but increased size of mets following Ipi treatment. 

    P.S. He did get the hair depigmentation and vitiligo after 2nd tx.

     

    Linda/Kentucky

    husband stage IV

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      JenM
      Participant

      Hi Linda,

      I don't know enough about LDH except I have read on these boards from multiple posters that LDH can go up for a variety of reasons and it does not have to be melanoma related.  In regards to the scans showing increasing in size of mets:  I have read a theory that Dr. Hodi (I believe that is the right spelling) who was one of the authors on the ipi paper that was published in the New England Journal of Medicine this past year, who said it might be the mets are increasing in size because they are filling up with immune fighting T-cells.  So it's not really that the mets are getting bigger because they are filling up with melanoma cells but the increase in volume is being replaced with T-cells that are in the mets destroying the melanoma cells.  Does that make sense?  I like the theory….hope he is right!

      In regards to the hair depigmentation and vitiglio…it sounds like you know that is a positive thing so that is another plus!  At this past ASCO meeting in June a doctor from New York University–Dr. Anna Pavlick presented a poster on ipi which correlated hair depigmentation with survival.  Here is a link that I found to an article with some of her comments on the topic.  http://www.msnbc.msn.com/id/37540361/

      Hope this information helps.  Good luck to your husband with the rest of the ipi treatments.

      Regards,

      Jen

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        Linda/Kentucky
        Participant

        Thanks Jen it does certainly does make sense or at least I want to think so.  I think I will google search Dr. Hodi and New England Journal. 

         

        Thanks again

        Linda/Kentucky

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        Linda/Kentucky
        Participant

        Thanks Jen it does certainly does make sense or at least I want to think so.  I think I will google search Dr. Hodi and New England Journal. 

         

        Thanks again

        Linda/Kentucky

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      JenM
      Participant

      Hi Linda,

      I don't know enough about LDH except I have read on these boards from multiple posters that LDH can go up for a variety of reasons and it does not have to be melanoma related.  In regards to the scans showing increasing in size of mets:  I have read a theory that Dr. Hodi (I believe that is the right spelling) who was one of the authors on the ipi paper that was published in the New England Journal of Medicine this past year, who said it might be the mets are increasing in size because they are filling up with immune fighting T-cells.  So it's not really that the mets are getting bigger because they are filling up with melanoma cells but the increase in volume is being replaced with T-cells that are in the mets destroying the melanoma cells.  Does that make sense?  I like the theory….hope he is right!

      In regards to the hair depigmentation and vitiglio…it sounds like you know that is a positive thing so that is another plus!  At this past ASCO meeting in June a doctor from New York University–Dr. Anna Pavlick presented a poster on ipi which correlated hair depigmentation with survival.  Here is a link that I found to an article with some of her comments on the topic.  http://www.msnbc.msn.com/id/37540361/

      Hope this information helps.  Good luck to your husband with the rest of the ipi treatments.

      Regards,

      Jen

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      Jerry from Cape Cod
      Participant

      Hi Linda,

      I've been in an earlier ipi trial for 82 weeks. My hair turned white around week 24.  The majority of the change only took about 10 days.  The vitiligo started faintly around week 7 (3rd treatment) and still continues to spread slowly.  Mostly on my arms.

      I went through a period of anemia in the early stages, but then improved slowly without need of transfusion.  I was heavy on ibuprofen for awhile due to joint and muscle ache.

      Give your husband my best.  It sounds like he's a responder, hopefully the scans will prove it.

      Jerry from Cape Cod

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      Jerry from Cape Cod
      Participant

      Hi Linda,

      I've been in an earlier ipi trial for 82 weeks. My hair turned white around week 24.  The majority of the change only took about 10 days.  The vitiligo started faintly around week 7 (3rd treatment) and still continues to spread slowly.  Mostly on my arms.

      I went through a period of anemia in the early stages, but then improved slowly without need of transfusion.  I was heavy on ibuprofen for awhile due to joint and muscle ache.

      Give your husband my best.  It sounds like he's a responder, hopefully the scans will prove it.

      Jerry from Cape Cod

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      Kevin from Atlanta
      Participant

      I remember when I met Dr Grossman he asked how did I find him, I stated Linda from Kentucky, he laughed since my oncologist wrote to check SC and FL for Ipi. I just finished the fourth treatment on Monday. There are sn many factors that can influence LDH. Mine has gone down from 350 to 135 in the past couple of weeks. I am on the Ibuprofen regimine and it does concern me.Try taking some B-12 low levels can raise LDH levels. It just seems like there are no definate rules or timeline on who is going to be a responder or not. I just figure after the first scan I will still not have an answer.

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        Linda/Kentucky
        Participant

        Thanks for the encouragment.  This thing is like a rollar coaster ride up and down sideways and across.  Kevin sounds like your LDH is in great shape really glad to hear that.  I'm glad you found Knoxville we have been very pleased with our treatment there especially Cheryl our clinical trial nurse.  Is that who you have too.  Seems like I e-mail her on a regular basis asking questions.  I'm a R.N. so sometimes too much knowledge is scary.  You are so right about Ipi sort of like melanoma no rhyme or reason WHY it does what it does and people respond so differently.  My husband did not get any of the usual s/e like diarrhea or rash he just was extremely fatigued much more than what they expected.  I told him one day his aches and pains was from the Ipi kicking Mel's butt and he said " that must be one heck of a fight going on in there" glad to see he hasn't lost his sense of humor. 

        Jerry thank you also for your encougagement some days it just feels good to hear what others have or are going through.  This MRF has been a Godsend to me for information, support, and encouragement. 

        Thanks again to all who post.  I pray for each of you every day and hope there will be a CURE for this ugly disease someday

         

        Linda/Kentucky husband stage IV liver/lungs/bone

        P.S. Kevin I am going to ask Dr. Grossman for a finders fee….. haha

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        Linda/Kentucky
        Participant

        Thanks for the encouragment.  This thing is like a rollar coaster ride up and down sideways and across.  Kevin sounds like your LDH is in great shape really glad to hear that.  I'm glad you found Knoxville we have been very pleased with our treatment there especially Cheryl our clinical trial nurse.  Is that who you have too.  Seems like I e-mail her on a regular basis asking questions.  I'm a R.N. so sometimes too much knowledge is scary.  You are so right about Ipi sort of like melanoma no rhyme or reason WHY it does what it does and people respond so differently.  My husband did not get any of the usual s/e like diarrhea or rash he just was extremely fatigued much more than what they expected.  I told him one day his aches and pains was from the Ipi kicking Mel's butt and he said " that must be one heck of a fight going on in there" glad to see he hasn't lost his sense of humor. 

        Jerry thank you also for your encougagement some days it just feels good to hear what others have or are going through.  This MRF has been a Godsend to me for information, support, and encouragement. 

        Thanks again to all who post.  I pray for each of you every day and hope there will be a CURE for this ugly disease someday

         

        Linda/Kentucky husband stage IV liver/lungs/bone

        P.S. Kevin I am going to ask Dr. Grossman for a finders fee….. haha

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      Kevin from Atlanta
      Participant

      I remember when I met Dr Grossman he asked how did I find him, I stated Linda from Kentucky, he laughed since my oncologist wrote to check SC and FL for Ipi. I just finished the fourth treatment on Monday. There are sn many factors that can influence LDH. Mine has gone down from 350 to 135 in the past couple of weeks. I am on the Ibuprofen regimine and it does concern me.Try taking some B-12 low levels can raise LDH levels. It just seems like there are no definate rules or timeline on who is going to be a responder or not. I just figure after the first scan I will still not have an answer.

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