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ipi, does it make you tired?

Forums General Melanoma Community ipi, does it make you tired?

  • Post
    AndyD
    Participant

    I've had 4 ipi treatments now and I feel so tired like gravity is 10x stronger than it should be. =] Is it this the cancer, the ipi, or my glands out of whack making me tired? If you're on ipi, do you feel way more tired than normal? Will I have normal energy levels in the future?

    hope to hear your thoughts

    I've had 4 ipi treatments now and I feel so tired like gravity is 10x stronger than it should be. =] Is it this the cancer, the ipi, or my glands out of whack making me tired? If you're on ipi, do you feel way more tired than normal? Will I have normal energy levels in the future?

    hope to hear your thoughts

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  • Replies
      Linda/Kentucky
      Participant

      Hello,

      Yes, Ipi can make you feel like you are carrying a mac truck on your back….My husband is at week 19 and his began around his 3rd treatment.  I have researched EVERY website known available to find the cause- because his was so intense and nobody I spoke with had it to his degree.  Even our oncologist couldn't figure out why his was so intense.  I spoke with DR. Wolchok at Sloans Kettering, we had hormone levels checked pituitary gland re-checked, already had thyroid problems trying to get it adjusted, and I could go on.  We felt just as you do, is it the Ipi or cancer and still not sure?  He is just now starting to see some energy come back but very slowly.  Don't mean to scare you or discourage you but want you to know there is sombody out here who had extreme fatigue unlike we were able to find.  Do you have any aches,pains?  Where are your mets?  You will be going for your scans soon won't you?  Good luck with your 12 week scans.  Ours came back so-so no new mets but increased size of mets which is common.  Has been very hard waiting for the 3 months before we get our scans again.  We go Oct. 5th not really looking forward to that at all.  Guess because if he is not a responder we will have to have a back-up plan and not sure what that will be?  Anyway good luck with everything and I hope you gain energy back soon, I know how frustrating it is when you can't even take a shower without sitting down,  Keep in touch.

       

      Linda/Kentucky

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        AndyD
        Participant

        Hey Linda,

        Thank you kindly for all the information. IL2 wiped out my thyroid but my blood doctor corrected it just before ipi. I feel like I've been super tired for the last 6 months, gaining weight and being a big couch blob lol. I seem to get scanned constantly and like your hub I just had my 12 week scans which were like his…growth but not sure…re-scan in 4 more weeks on Oct 1. Even if the ipi fails I'm kind of hoping my energy returns before the cancer progresses further. When I get my ipi injections, the nurses have told me that "tired" is the number one complaint they hear. Maybe someone who is off ipi or just on maintenance can tell us how their energy levels feel. I'm tempted to up my thyroid meds for a month just to test.

        Ya after ipi there is not much offered. I'm not sure if I'll do another trial or just enjoy my remaining time. My clinical doctor has mentioned the following that you may want to research: Tasisulam and Mek inhibitors. Here are a couple of links. Meks are like B-RAF.

        http://bit.ly/9kGUbS

        http://bit.ly/cmDZFh

        Fingers crossed that the October scans bring positive info for both your husband and me. :)

         

        Andy

         

         

         

         

         

         

         

         

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        AndyD
        Participant

        Hey Linda,

        Thank you kindly for all the information. IL2 wiped out my thyroid but my blood doctor corrected it just before ipi. I feel like I've been super tired for the last 6 months, gaining weight and being a big couch blob lol. I seem to get scanned constantly and like your hub I just had my 12 week scans which were like his…growth but not sure…re-scan in 4 more weeks on Oct 1. Even if the ipi fails I'm kind of hoping my energy returns before the cancer progresses further. When I get my ipi injections, the nurses have told me that "tired" is the number one complaint they hear. Maybe someone who is off ipi or just on maintenance can tell us how their energy levels feel. I'm tempted to up my thyroid meds for a month just to test.

        Ya after ipi there is not much offered. I'm not sure if I'll do another trial or just enjoy my remaining time. My clinical doctor has mentioned the following that you may want to research: Tasisulam and Mek inhibitors. Here are a couple of links. Meks are like B-RAF.

        http://bit.ly/9kGUbS

        http://bit.ly/cmDZFh

        Fingers crossed that the October scans bring positive info for both your husband and me. :)

         

        Andy

         

         

         

         

         

         

         

         

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      Linda/Kentucky
      Participant

      Hello,

      Yes, Ipi can make you feel like you are carrying a mac truck on your back….My husband is at week 19 and his began around his 3rd treatment.  I have researched EVERY website known available to find the cause- because his was so intense and nobody I spoke with had it to his degree.  Even our oncologist couldn't figure out why his was so intense.  I spoke with DR. Wolchok at Sloans Kettering, we had hormone levels checked pituitary gland re-checked, already had thyroid problems trying to get it adjusted, and I could go on.  We felt just as you do, is it the Ipi or cancer and still not sure?  He is just now starting to see some energy come back but very slowly.  Don't mean to scare you or discourage you but want you to know there is sombody out here who had extreme fatigue unlike we were able to find.  Do you have any aches,pains?  Where are your mets?  You will be going for your scans soon won't you?  Good luck with your 12 week scans.  Ours came back so-so no new mets but increased size of mets which is common.  Has been very hard waiting for the 3 months before we get our scans again.  We go Oct. 5th not really looking forward to that at all.  Guess because if he is not a responder we will have to have a back-up plan and not sure what that will be?  Anyway good luck with everything and I hope you gain energy back soon, I know how frustrating it is when you can't even take a shower without sitting down,  Keep in touch.

       

      Linda/Kentucky

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      Jerry from Cape Cod
      Participant

      HI Andy,

      I've been on IPI for 83 weeks. I couldn't get out of my own way for the first 40 weeks or so.  We found that my thyroid level was very low. We are still adjusting the replacement therapy every 4 months or so. 

      In the summer of 2009 a fellow IPI patient and physician suggested that I have my testosterone checked.  Turned out that my testosterone level had dropped into the celler. I started on testosterone replacement therapy by late October I had improved tremendously.  My strength and endurance has improved dramatically in the past year.

      I still get tired for a few days after each quarterly treatment.  Wife says I'm a little grouchy also (more than normal) for about 5 or 6 days after treatment.

      Jerry from Cape Cod

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      Jerry from Cape Cod
      Participant

      HI Andy,

      I've been on IPI for 83 weeks. I couldn't get out of my own way for the first 40 weeks or so.  We found that my thyroid level was very low. We are still adjusting the replacement therapy every 4 months or so. 

      In the summer of 2009 a fellow IPI patient and physician suggested that I have my testosterone checked.  Turned out that my testosterone level had dropped into the celler. I started on testosterone replacement therapy by late October I had improved tremendously.  My strength and endurance has improved dramatically in the past year.

      I still get tired for a few days after each quarterly treatment.  Wife says I'm a little grouchy also (more than normal) for about 5 or 6 days after treatment.

      Jerry from Cape Cod

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      Kevin from Atlanta
      Participant

      I had extreme fatigue going into Ipi and I was sleeping 16 hours a day. I started Ritalin now only sleep 10 hours a day and feel like I have more energy but my pain stops me from using it most of the time. I had the pain before the Ipi treatments.

      I have finished all four Ipi treatments and get scanned on Wendsday.

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        Jerry from Cape Cod
        Participant

        Kevin,

        Good luck with the scans.

        Jerry from Cape Cod

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        Jerry from Cape Cod
        Participant

        Kevin,

        Good luck with the scans.

        Jerry from Cape Cod

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        Linda/Kentucky
        Participant

        Kevin good luck Wed. with your scans.  Remember things can and usually do look worse initally with Ipi .  Please do not get discouraged if you don't get the exact results you were waiting for.  Good things come to those who wait~~~~  Will say an extra prayer for your results.  Let us know how things turn out.

         

        Linda/Kentucky

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        Linda/Kentucky
        Participant

        Kevin good luck Wed. with your scans.  Remember things can and usually do look worse initally with Ipi .  Please do not get discouraged if you don't get the exact results you were waiting for.  Good things come to those who wait~~~~  Will say an extra prayer for your results.  Let us know how things turn out.

         

        Linda/Kentucky

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      Kevin from Atlanta
      Participant

      I had extreme fatigue going into Ipi and I was sleeping 16 hours a day. I started Ritalin now only sleep 10 hours a day and feel like I have more energy but my pain stops me from using it most of the time. I had the pain before the Ipi treatments.

      I have finished all four Ipi treatments and get scanned on Wendsday.

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      Jim M.
      Participant

      I had 4 doses of Ipi back in 2008. I still feel tired sometimes driving or when I'm sitting at my desk.

       

      Jim M.

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      Jim M.
      Participant

      I had 4 doses of Ipi back in 2008. I still feel tired sometimes driving or when I'm sitting at my desk.

       

      Jim M.

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