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interluekin-2

Forums General Melanoma Community interluekin-2

  • Post
    carol b
    Participant

    I start Interluekin-2 next tuesday at the Baptist Memorial Hosp in Memhpis Tn..I dont qualify for surgery because the tumor and lymphodes are matted and to close to the nerves and blood vessels under my arm and in my neck.. Can anyone tell me about what my first day will be like with the interluekin-2? thanks in advancesad

    I start Interluekin-2 next tuesday at the Baptist Memorial Hosp in Memhpis Tn..I dont qualify for surgery because the tumor and lymphodes are matted and to close to the nerves and blood vessels under my arm and in my neck.. Can anyone tell me about what my first day will be like with the interluekin-2? thanks in advancesad

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  • Replies
      KellieSue
      Participant

      Jane From Maine made a great info sheet. Good luck with IL-2. I'm thinking about starting on Monday, Jan. 10.

      http://melanomaresources.info/jane.html#homenotes

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      KellieSue
      Participant

      Jane From Maine made a great info sheet. Good luck with IL-2. I'm thinking about starting on Monday, Jan. 10.

      http://melanomaresources.info/jane.html#homenotes

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      mimi0201
      Participant

      My husband received 8 bags of IL-2 the first week of Dec.  He did not experience any side effects for the first few days.  After bag 6 he developed many of the predicted side effects, and is now almost back to normal.  We are now back in the hospital  for round 2.  His biggest complaint has been the skin peeling and itching.  Aquaphor lotion and Benadryl are helping.  Feel free to contact us if we can help.  Mary  [email protected]

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      mimi0201
      Participant

      My husband received 8 bags of IL-2 the first week of Dec.  He did not experience any side effects for the first few days.  After bag 6 he developed many of the predicted side effects, and is now almost back to normal.  We are now back in the hospital  for round 2.  His biggest complaint has been the skin peeling and itching.  Aquaphor lotion and Benadryl are helping.  Feel free to contact us if we can help.  Mary  [email protected]

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      kylez
      Participant

      Hi Carol,

      Good luck with the IL2 treatment. Apparently everybody reacts a little differently. I had 4 cycles/2 courses this summer.

      During each cycle I was tired and nauseous. I would get cold, and then hot, after each bag. Not to mention that the hospital food was bland and awful! If I'm in hospital again I'm thinking I should bring some tabasco sauce or something. Getting friends to bring in take-out is definitely recommended — at least maybe it will still be hot instead of sitting for 2 hrs before brought to you.

      Not to be sound scary, it wasn't really, but there were some mental effects — especially on cycles 3/4, I would cycle between awake and asleep fairly frequiently every 15-30 minutes.

      If you can force yourself depsite how you're feeling to walk around some with the IV pole, that may help combat constipation, which got kind of bad for me. I didn't get the expected diahrrea side effect — diarrhea or involuntary bowel movement in my case — till the 4th cycle.

      After each cycle, my main side effects were being tired, and psoriasis/eczema on my calves and occasionally other places. The tiredness gradually decreased for me over a few weeks till normal again. As for the psoriasis/eczema, I take it as a good sign that I still have them today(my most recent/4th cycle was in August), makes me think the IL2 effects are ongoing.

      – Kyle

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      kylez
      Participant

      Hi Carol,

      Good luck with the IL2 treatment. Apparently everybody reacts a little differently. I had 4 cycles/2 courses this summer.

      During each cycle I was tired and nauseous. I would get cold, and then hot, after each bag. Not to mention that the hospital food was bland and awful! If I'm in hospital again I'm thinking I should bring some tabasco sauce or something. Getting friends to bring in take-out is definitely recommended — at least maybe it will still be hot instead of sitting for 2 hrs before brought to you.

      Not to be sound scary, it wasn't really, but there were some mental effects — especially on cycles 3/4, I would cycle between awake and asleep fairly frequiently every 15-30 minutes.

      If you can force yourself depsite how you're feeling to walk around some with the IV pole, that may help combat constipation, which got kind of bad for me. I didn't get the expected diahrrea side effect — diarrhea or involuntary bowel movement in my case — till the 4th cycle.

      After each cycle, my main side effects were being tired, and psoriasis/eczema on my calves and occasionally other places. The tiredness gradually decreased for me over a few weeks till normal again. As for the psoriasis/eczema, I take it as a good sign that I still have them today(my most recent/4th cycle was in August), makes me think the IL2 effects are ongoing.

      – Kyle

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      dian in spokane
      Participant

      Hi Carol,

      I'm glad to hear you'll be starting IL-2 soon, and getting a jump on some treatment. We've known a lot of people here who have had fantastic success with IL-2, even though it's a tough treatment. Jane, who was mentioned, plus Stan, and David, and DebbieVA.. You can find Debbie's profile here under DebbieVA and might be able to reach her there.

      She doesn't often get over to this board, but she's here sometimes, so maybe she'll see your post. You might have even met her in the chatroom, as she does come in there once in a while.

      I know she'd be happy to talk with you about IL2

       

      good luck!

      dian

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      dian in spokane
      Participant

      Hi Carol,

      I'm glad to hear you'll be starting IL-2 soon, and getting a jump on some treatment. We've known a lot of people here who have had fantastic success with IL-2, even though it's a tough treatment. Jane, who was mentioned, plus Stan, and David, and DebbieVA.. You can find Debbie's profile here under DebbieVA and might be able to reach her there.

      She doesn't often get over to this board, but she's here sometimes, so maybe she'll see your post. You might have even met her in the chatroom, as she does come in there once in a while.

      I know she'd be happy to talk with you about IL2

       

      good luck!

      dian

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      Kim K
      Participant

      Best of luck to you.

      Read my archived posts, it will give you a bunch of detailed info.  Jane from Maine's website was a godsend for me.  I added to it.

      I made it through 23 bags this May-June and became NED this July.

      Tough but doable.  They will bring you to the brink of death, only to snatch you back again.  Once your treatment is over though it is a pretty fast recovery.  The peeling skin and itchiness takes the longest to get over.  My itichiness wasn't so bad, but I peeled.  Even my eyelids, ears, and the inside of my nose peeled.  I DID have baby bottom smooth glowing skin for a few months after though – and insurance paid for the most expensive skin peels!

      After the second day I slept most of the time so I was fine.  It was hardest on my mom to watch me.  The first cycle my kidneys shut down and I began to bleed from my kidneys.  The second time my lungs filled up with so much fluid and I had a cold.  I was afraid that if I took another bag I would die so I stopped at 10 bags and gained 33 pounds of fluid.  I couldn't lie down flat because I would start gasping for air.  Oh and I had heart arrythmias.   Every side effect I had and then some, but it was worth it…..

      Kim

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      Kim K
      Participant

      Best of luck to you.

      Read my archived posts, it will give you a bunch of detailed info.  Jane from Maine's website was a godsend for me.  I added to it.

      I made it through 23 bags this May-June and became NED this July.

      Tough but doable.  They will bring you to the brink of death, only to snatch you back again.  Once your treatment is over though it is a pretty fast recovery.  The peeling skin and itchiness takes the longest to get over.  My itichiness wasn't so bad, but I peeled.  Even my eyelids, ears, and the inside of my nose peeled.  I DID have baby bottom smooth glowing skin for a few months after though – and insurance paid for the most expensive skin peels!

      After the second day I slept most of the time so I was fine.  It was hardest on my mom to watch me.  The first cycle my kidneys shut down and I began to bleed from my kidneys.  The second time my lungs filled up with so much fluid and I had a cold.  I was afraid that if I took another bag I would die so I stopped at 10 bags and gained 33 pounds of fluid.  I couldn't lie down flat because I would start gasping for air.  Oh and I had heart arrythmias.   Every side effect I had and then some, but it was worth it…..

      Kim

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      jag
      Participant

      Carol, First whatever your decision is, I wish you the best of luck.  

      I would reccomend you get a second opinion if they tell you surgery is too complicated.  There are surgeons who specialize in oncological surgery.  I know that one at the University of Virginia, Craig Slingluff, is very qualified for this sort of thing.  Local hospitals may not offer you this option just because they don't have this sort of specialized training.

      If that is not an option, I wish you the best of luck with IL2.  

      If surgery is an option, it is 100% effective.

      God Bless

      John 

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        JerryfromFauq
        Participant

        I would want Craig to determine if he believes surgery is an option.  He is a wonderful person as well as an outstanding Melanoma researcher and surgeon.

        My Il-2 experiences are under JerryfromFauq.  One thing to watch for in the early days are the "Rigors' or chills.  for me they would start about 1 hour 45minutes to 2 hours after finishing a bag of Il-2.  DON'T try to brave them out!  when you fell a chill coming on, tell the nurses and get the meds for them.  Being brave is not worth the agony from the chills.  also don't delay asking for meds too long if nauseas.  About three days into each week I would lose my tasting ability.  (What does cardboard taste like?)

           Jane is our Il-2 guru and a great person. 

        My email is [email protected] if you would like more direct contact or telephonic contact.  I went thru 3 rounds (six weeks of receiving il-2 treatments at UVA.  It's rough, but likely the reason I'm still here.

         

        JerryfromFauq Staage IV since March 2007.

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        JerryfromFauq
        Participant

        I would want Craig to determine if he believes surgery is an option.  He is a wonderful person as well as an outstanding Melanoma researcher and surgeon.

        My Il-2 experiences are under JerryfromFauq.  One thing to watch for in the early days are the "Rigors' or chills.  for me they would start about 1 hour 45minutes to 2 hours after finishing a bag of Il-2.  DON'T try to brave them out!  when you fell a chill coming on, tell the nurses and get the meds for them.  Being brave is not worth the agony from the chills.  also don't delay asking for meds too long if nauseas.  About three days into each week I would lose my tasting ability.  (What does cardboard taste like?)

           Jane is our Il-2 guru and a great person. 

        My email is [email protected] if you would like more direct contact or telephonic contact.  I went thru 3 rounds (six weeks of receiving il-2 treatments at UVA.  It's rough, but likely the reason I'm still here.

         

        JerryfromFauq Staage IV since March 2007.

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      jag
      Participant

      Carol, First whatever your decision is, I wish you the best of luck.  

      I would reccomend you get a second opinion if they tell you surgery is too complicated.  There are surgeons who specialize in oncological surgery.  I know that one at the University of Virginia, Craig Slingluff, is very qualified for this sort of thing.  Local hospitals may not offer you this option just because they don't have this sort of specialized training.

      If that is not an option, I wish you the best of luck with IL2.  

      If surgery is an option, it is 100% effective.

      God Bless

      John 

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