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I am getting the IL-2 treatment…wondering how well it did for others???

Forums General Melanoma Community I am getting the IL-2 treatment…wondering how well it did for others???

  • Post
    peacefrog521
    Participant

    I was diagnosed with stage IV melanoma that spread to my lungs and my uterus. On October 5th I was hospitalized for one week and got 9 doses of the IL-2. Then i got out for a week and went back the week after and only got 5 more doses. I couldnt urinate no more and they said my body had enough. Im out of the hospital one week tomorrow and my PET scan isnt scheduled for at least 5 weeks. I was wondering what symptoms anyone had and when will I feel myself again. Im having spouts of hives…constantly going to the bathroom and cant sleep right…also did this work for anyone.

    I was diagnosed with stage IV melanoma that spread to my lungs and my uterus. On October 5th I was hospitalized for one week and got 9 doses of the IL-2. Then i got out for a week and went back the week after and only got 5 more doses. I couldnt urinate no more and they said my body had enough. Im out of the hospital one week tomorrow and my PET scan isnt scheduled for at least 5 weeks. I was wondering what symptoms anyone had and when will I feel myself again. Im having spouts of hives…constantly going to the bathroom and cant sleep right…also did this work for anyone. Im 35, mother of two and afraid this might not work. If it doesnt does anyone recomend another option.???? Please help…Im scared as hell !!!!!!!!!

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      glewis923
      Participant

      Dear PeaceFrog-

      I havn't done IL-2 yet.  Wish I had done more (including IL-2) sooner than I did.   Now I have multiple tumors in my lungs.  Don't beat yourself up too bad- i find myself way too often regreting what i did or didn't do.  I even question what i'm doing now!

      ….anyway, i would suspect after being on IL-2 for "2 rounds"? that your sleep cycle would not surprizingly be outta whack.  I hope the IL-2 will work with you.  What hospital / Drs. are you seeing?  Waiting 5 wks. seems like a long time, but may be a normal wait after IL-2.

       

      Hang in there,  Love from Shady-Grady.

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      glewis923
      Participant

      Dear PeaceFrog-

      I havn't done IL-2 yet.  Wish I had done more (including IL-2) sooner than I did.   Now I have multiple tumors in my lungs.  Don't beat yourself up too bad- i find myself way too often regreting what i did or didn't do.  I even question what i'm doing now!

      ….anyway, i would suspect after being on IL-2 for "2 rounds"? that your sleep cycle would not surprizingly be outta whack.  I hope the IL-2 will work with you.  What hospital / Drs. are you seeing?  Waiting 5 wks. seems like a long time, but may be a normal wait after IL-2.

       

      Hang in there,  Love from Shady-Grady.

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      Rick from NC
      Participant

      Hang in there, be patient, and see what response you get.  IL-2 is not easy; I had those symptoms, and more, but it gave me a complete response in 1992, and I'm still here now in 2010 NED.  Take it a step at a time.  Best wishes, Rick

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        himynameiskevin
        Participant

        I just finished IL-2 6 weeks ago. 14 bags the first round and 9 the second. Unfortunetly I just found out today that my scans from monday show no significant repsonse from the IL-2, just a possible minimal response. All the side effecst are normal, I started feeling well again, about a week out of the hospital, but my skin didn't stop peeling for another week after that. Sleep got better as my side effects faded. I've heard that people with more side effects seem to be more repsonsive to the treatment, so maybe try and think of those effects as a little blessings in disguise. There's a lot of info on here nad people stories of IL-2 that might be informative and encouraging. Just search "IL-2" or "Interleukin". Good luck and I hope you feel better soon. -Kevin

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        himynameiskevin
        Participant

        I just finished IL-2 6 weeks ago. 14 bags the first round and 9 the second. Unfortunetly I just found out today that my scans from monday show no significant repsonse from the IL-2, just a possible minimal response. All the side effecst are normal, I started feeling well again, about a week out of the hospital, but my skin didn't stop peeling for another week after that. Sleep got better as my side effects faded. I've heard that people with more side effects seem to be more repsonsive to the treatment, so maybe try and think of those effects as a little blessings in disguise. There's a lot of info on here nad people stories of IL-2 that might be informative and encouraging. Just search "IL-2" or "Interleukin". Good luck and I hope you feel better soon. -Kevin

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      Rick from NC
      Participant

      Hang in there, be patient, and see what response you get.  IL-2 is not easy; I had those symptoms, and more, but it gave me a complete response in 1992, and I'm still here now in 2010 NED.  Take it a step at a time.  Best wishes, Rick

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      JerryfromFauq
      Participant

      I went thru six weeks (three rounds) of Il-2 because it has the best chance of being successful of all the known treatments.  (I had two weeks between treatment weeks of each round and a couple of months for scans beteen rounds)  This stabilized me for 20 months until a targeted treatment was available.  Now stage IV for almost 4 years and still enjoying life.  Was about 80% of normal after a week out of the hospital for each of the six weeks..  (The anti-itch lotion was needed longer than that!)  Ambien might help for the sleep  .    

      I know many people that IL-2 has helped.  Rick had only IL-2 as his melanoma stage IV treatment.  He has been NED since 1992.  More recently check on Jane from Maine and DebbieVA.  They have been NED for 3-4 years thanks to IL-2.    If IL-2 is not successful in at least stabilizing the tumors growth (partial response), I would look at either a targeted treatment if your tumors are c-kit or BRAF positive.  If they are not Ipi is the next treatment I would be interested in. Where was yur primary location?   This can help point to the posible  treatments .     

      to the leg prblems, but do everything else! (Including playing with 10 grand kids)

      http://cancerguide.org/rcc_il2hd.html.

      http://www.carepages.com/carepages/JerryEllis

      CancerGuide: Classic High Dose Interleukin-2 
      CancerGuide: Classic High Dose Interleukin-2
      CancerGuide: Classic High Dose Interleukin-2 
      CancerGuide: Classic High Dose Interleukin-2
      CancerGuide: Classic High Dose Interleukin-2
      CancerGuide: Classic High Dose Interleukin-2
      CancerGuide: Classic High Dose Interleukin-2
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      JerryfromFauq
      Participant

      I went thru six weeks (three rounds) of Il-2 because it has the best chance of being successful of all the known treatments.  (I had two weeks between treatment weeks of each round and a couple of months for scans beteen rounds)  This stabilized me for 20 months until a targeted treatment was available.  Now stage IV for almost 4 years and still enjoying life.  Was about 80% of normal after a week out of the hospital for each of the six weeks..  (The anti-itch lotion was needed longer than that!)  Ambien might help for the sleep  .    

      I know many people that IL-2 has helped.  Rick had only IL-2 as his melanoma stage IV treatment.  He has been NED since 1992.  More recently check on Jane from Maine and DebbieVA.  They have been NED for 3-4 years thanks to IL-2.    If IL-2 is not successful in at least stabilizing the tumors growth (partial response), I would look at either a targeted treatment if your tumors are c-kit or BRAF positive.  If they are not Ipi is the next treatment I would be interested in. Where was yur primary location?   This can help point to the posible  treatments .     

      to the leg prblems, but do everything else! (Including playing with 10 grand kids)

      http://cancerguide.org/rcc_il2hd.html.

      http://www.carepages.com/carepages/JerryEllis

      CancerGuide: Classic High Dose Interleukin-2 
      CancerGuide: Classic High Dose Interleukin-2
      CancerGuide: Classic High Dose Interleukin-2 
      CancerGuide: Classic High Dose Interleukin-2
      CancerGuide: Classic High Dose Interleukin-2
      CancerGuide: Classic High Dose Interleukin-2
      CancerGuide: Classic High Dose Interleukin-2
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