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Husband home from round one of IL-2

Forums General Melanoma Community Husband home from round one of IL-2

  • Post
    mimi0201
    Participant

    My husband has returned home from 7 days in the hospital after receiving 8 bags of IL-2.  We could use some reassurance that the numerous side effects will ease.  He's experienced most of the anticipated effects, with some extras.     He's pretty unresponsive, so it's had to judge what might be his biggest complication.  Kidney function is impaired, but lasix is helping with that.  I'm feeling kind of cast adrift, and could use some encouragement from IL-2 veterans.  Thanks.

    My husband has returned home from 7 days in the hospital after receiving 8 bags of IL-2.  We could use some reassurance that the numerous side effects will ease.  He's experienced most of the anticipated effects, with some extras.     He's pretty unresponsive, so it's had to judge what might be his biggest complication.  Kidney function is impaired, but lasix is helping with that.  I'm feeling kind of cast adrift, and could use some encouragement from IL-2 veterans.  Thanks.

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  • Replies
      ValinMtl
      Participant

      Hello…I have not done IL-2 but it was an option at one point and somebody (I wish I could remember who!!) on the bulletin board wrote an extremely well-informed sheet as to how to cope.  I cut and pasted into my folder, I'm hoping this can give you some support on caring for your husband. It's a rough treatment that's for sure.  All the best, Val (currently on compassionate ipilimumab trial)

      IL-2 Tip Sheet

      PLEASE KEEP IN MIND I AM NOT A DOCTOR, BUT I WANTED TO SHARE WITH OTHERS MY EXPERIENCE WITH IL-2 AND THINGS THAT HELPED ME AND COULD POSSIBLY HELP YOU.

      The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down your entire room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. My husband and daughter would go in and do a clean sweep; all too often patients get infections in hospitals.

      Things to bring

      ■Your own sheets, pillow, and blanket

      ■Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)

      ■Soft toilet paper

      ■2 cases of bottled water

      ■2 bunches of bananas

      ■SARNA anti-itch lotion

      ■A good lip balm

      ■A I-pod or some music that has a headset- bring relaxing music

      ■Some sort of protein drink that is sugar free that can be mixed with water

      ■A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)

      ■A heating pad

      ■Slide on slippers

      ■A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin

      ■If someone is sleeping over with you every night (which I recommend if possible) go to the craft store and buy 4” foam padding the shape of a sleeping bag, to put under the sleeping bag.

      During and after Treatment

      Have them give you an Ativan an hour before they do the PICC line

      As soon as you feel the slightest sensation of cold feet, hands, chilly etc. ask for the warm heated blankets that the hospital should have on hand.

      Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet

      If the warm blankets don’t stop you from shaking, ask them to give you Morphine before it turns into the rigors. Provided the patient has no reactions to morphine.

      Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that the I.V. fluids you are getting are enough. It’s NOT.

      They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people.

      Make sure they give you get Lasix water pills before you leave the hospital. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off in just a few short days with the water pills.

      Try to eat 2 bananas a day so your potassium levels don’t get depleted.

      As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit (forgot the name) its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous

      Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.

      When your heart rate starts to go really high have someone massage your feet, this will help lower it for a while. normal

      When your blood pressure drops they will work with it to raise it, so this is normal.

      If you can’t sleep make sure they give you a sleep aid.

      You will also experience fevers, and they will keep you on Tylenol.

      Once you are home have easy things around to eat like Mac & Cheese, chicken noodle soup etc.

      Also take cool Oatmeal baths 2X a day and as soon as you get out lather the SARNA lotion all over.

      Make sure they also send you home with itch pills called Hydroxyzine HCL. These help a lot

      If you have fluid in your ears take a benadryl, this helps a lot. (provided you are not allergic)

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      ValinMtl
      Participant

      Hello…I have not done IL-2 but it was an option at one point and somebody (I wish I could remember who!!) on the bulletin board wrote an extremely well-informed sheet as to how to cope.  I cut and pasted into my folder, I'm hoping this can give you some support on caring for your husband. It's a rough treatment that's for sure.  All the best, Val (currently on compassionate ipilimumab trial)

      IL-2 Tip Sheet

      PLEASE KEEP IN MIND I AM NOT A DOCTOR, BUT I WANTED TO SHARE WITH OTHERS MY EXPERIENCE WITH IL-2 AND THINGS THAT HELPED ME AND COULD POSSIBLY HELP YOU.

      The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down your entire room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. My husband and daughter would go in and do a clean sweep; all too often patients get infections in hospitals.

      Things to bring

      ■Your own sheets, pillow, and blanket

      ■Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)

      ■Soft toilet paper

      ■2 cases of bottled water

      ■2 bunches of bananas

      ■SARNA anti-itch lotion

      ■A good lip balm

      ■A I-pod or some music that has a headset- bring relaxing music

      ■Some sort of protein drink that is sugar free that can be mixed with water

      ■A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)

      ■A heating pad

      ■Slide on slippers

      ■A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin

      ■If someone is sleeping over with you every night (which I recommend if possible) go to the craft store and buy 4” foam padding the shape of a sleeping bag, to put under the sleeping bag.

      During and after Treatment

      Have them give you an Ativan an hour before they do the PICC line

      As soon as you feel the slightest sensation of cold feet, hands, chilly etc. ask for the warm heated blankets that the hospital should have on hand.

      Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet

      If the warm blankets don’t stop you from shaking, ask them to give you Morphine before it turns into the rigors. Provided the patient has no reactions to morphine.

      Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that the I.V. fluids you are getting are enough. It’s NOT.

      They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people.

      Make sure they give you get Lasix water pills before you leave the hospital. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off in just a few short days with the water pills.

      Try to eat 2 bananas a day so your potassium levels don’t get depleted.

      As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit (forgot the name) its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous

      Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.

      When your heart rate starts to go really high have someone massage your feet, this will help lower it for a while. normal

      When your blood pressure drops they will work with it to raise it, so this is normal.

      If you can’t sleep make sure they give you a sleep aid.

      You will also experience fevers, and they will keep you on Tylenol.

      Once you are home have easy things around to eat like Mac & Cheese, chicken noodle soup etc.

      Also take cool Oatmeal baths 2X a day and as soon as you get out lather the SARNA lotion all over.

      Make sure they also send you home with itch pills called Hydroxyzine HCL. These help a lot

      If you have fluid in your ears take a benadryl, this helps a lot. (provided you are not allergic)

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        JerryfromFauq
        Participant

        http://www.operationsunshield.org/  is the url of our il-2 guru, Jane from Maine. 

        Many people (about 20%) have had from partial success (me) to complete success with IL-2.  To date it has had by far the best record on the broad melanoma population.  Most of the sysmtpoms ease greately (about 80%) 5-7 days after the last bag of each week.  The itch will last longer.  I have met people that havae remained NED for 19 years since their last IL-2 treatment.  I was stable for 20 months after my 6 weekw of il-2 treatments.  This period extended me to the point that another treatment became available which has held me stable for another 18 months so far.  My taste came back after thye fifth day each time.

         

         I had at lesst a 2 week break between the two weeks of each il-2 round.

        Good luck to your husband

        JerryfromFauq stage 4 as of March 2007/

         

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        JerryfromFauq
        Participant

        http://www.operationsunshield.org/  is the url of our il-2 guru, Jane from Maine. 

        Many people (about 20%) have had from partial success (me) to complete success with IL-2.  To date it has had by far the best record on the broad melanoma population.  Most of the sysmtpoms ease greately (about 80%) 5-7 days after the last bag of each week.  The itch will last longer.  I have met people that havae remained NED for 19 years since their last IL-2 treatment.  I was stable for 20 months after my 6 weekw of il-2 treatments.  This period extended me to the point that another treatment became available which has held me stable for another 18 months so far.  My taste came back after thye fifth day each time.

         

         I had at lesst a 2 week break between the two weeks of each il-2 round.

        Good luck to your husband

        JerryfromFauq stage 4 as of March 2007/

         

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        BethA in VA
        Participant

        Love the list.  This covered everything.  I just copied it, because I may some day need it.  Good Luck to anyone doing this.  I wish you well.  Beth 3/B

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        BethA in VA
        Participant

        Love the list.  This covered everything.  I just copied it, because I may some day need it.  Good Luck to anyone doing this.  I wish you well.  Beth 3/B

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      KatyWI
      Participant

      I'm just here to offer reassurance that he'll feel better within a couple of days.  The lasix is a wonder drug – he'll be peeing his brains out while he loses the water, but he'll feel so much better.  Jerry is right – sense of taste is going to be off for the better part of a week.  One bizarre thing I found was that diet soda tasted AWFUL for more than a week.  Avoid anything with aspartame (NutraSweet)!  What did taste good was relatively bland stuff – rice, my mom's pork chops and gravy, chicken soup.  See what he can find that tastes good. 

      I did not have much itch my very first round, but  if he does, try benadryl, try Sarna, try Vaseline Sheer Infusion (my favorite), try keeping showers short and tepid, and try Dove unscented body wash instead of soap. 

      I'm a little worried that you use the word "unresponsive."  Is he just zonked out and tired?  I certainly was, but I had awful insomnia the first two nights at home even though I couldn't sleep in the hospital.  But if he's more than just tired and truly not responsive, that might merit a call to the nurse.  That could be indicative of more serious complications.

      This was the first round, you say?  I expect things will feel better relatively fast.  The side effects tend to drag on a little longer in the later rounds, but at least by then you'll both have confidence that he'll feel normal agiain soon.

      Good luck to you both!

      KatyWI

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      KatyWI
      Participant

      I'm just here to offer reassurance that he'll feel better within a couple of days.  The lasix is a wonder drug – he'll be peeing his brains out while he loses the water, but he'll feel so much better.  Jerry is right – sense of taste is going to be off for the better part of a week.  One bizarre thing I found was that diet soda tasted AWFUL for more than a week.  Avoid anything with aspartame (NutraSweet)!  What did taste good was relatively bland stuff – rice, my mom's pork chops and gravy, chicken soup.  See what he can find that tastes good. 

      I did not have much itch my very first round, but  if he does, try benadryl, try Sarna, try Vaseline Sheer Infusion (my favorite), try keeping showers short and tepid, and try Dove unscented body wash instead of soap. 

      I'm a little worried that you use the word "unresponsive."  Is he just zonked out and tired?  I certainly was, but I had awful insomnia the first two nights at home even though I couldn't sleep in the hospital.  But if he's more than just tired and truly not responsive, that might merit a call to the nurse.  That could be indicative of more serious complications.

      This was the first round, you say?  I expect things will feel better relatively fast.  The side effects tend to drag on a little longer in the later rounds, but at least by then you'll both have confidence that he'll feel normal agiain soon.

      Good luck to you both!

      KatyWI

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      chrisS
      Participant

      My wife completed her second cycle of high dose IL-2 last month.  Each time she goes in for a week, out for a week, in for a week out for 5 weeks then scan. That first week was so bad because we had done no research and it was sprung on us so fast do to the quick spread she was encountering.  The following times we had this same exact list and it helped so much! She showed a partial response which is what is keeping us in it.  I know it can be tough to get through without knowing exactly what its doing.  It seems that the second week is has been worse both times.  The effects seem to linger longer.  She is almost always better after a week.   The doc will not let her take the lasik so the worse part for her is the weight gain, she gains 30-40 pounds each time and moving around can be tough along with the peeling and itching.

      Some things i didn't see on the list that she really likes were oatmeal baths for the itching, but not to hot because that makes her itch more, and some special eye lid stuff she uses,  i cant remember what its called but her eyes seem to peel really bad.

      I know it can be challenging but I try to either be at the hospital or have a good friend be there at all times especial near the end of the week.  When the insomnia sets in and lack of sleep can make you sad it really helps her to have a person their to make her laugh that she is comfortable seeing her in a venerable state.  She also has trouble sleeping the first few days back but we would give her some Tylonal PMs to help and we just try to keep her mind off it.  After her heart rate slows she conks out for like a full day.

      Hang in there!

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      chrisS
      Participant

      My wife completed her second cycle of high dose IL-2 last month.  Each time she goes in for a week, out for a week, in for a week out for 5 weeks then scan. That first week was so bad because we had done no research and it was sprung on us so fast do to the quick spread she was encountering.  The following times we had this same exact list and it helped so much! She showed a partial response which is what is keeping us in it.  I know it can be tough to get through without knowing exactly what its doing.  It seems that the second week is has been worse both times.  The effects seem to linger longer.  She is almost always better after a week.   The doc will not let her take the lasik so the worse part for her is the weight gain, she gains 30-40 pounds each time and moving around can be tough along with the peeling and itching.

      Some things i didn't see on the list that she really likes were oatmeal baths for the itching, but not to hot because that makes her itch more, and some special eye lid stuff she uses,  i cant remember what its called but her eyes seem to peel really bad.

      I know it can be challenging but I try to either be at the hospital or have a good friend be there at all times especial near the end of the week.  When the insomnia sets in and lack of sleep can make you sad it really helps her to have a person their to make her laugh that she is comfortable seeing her in a venerable state.  She also has trouble sleeping the first few days back but we would give her some Tylonal PMs to help and we just try to keep her mind off it.  After her heart rate slows she conks out for like a full day.

      Hang in there!

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      himynameiskevin
      Participant

      Hi, I did IL-2. 14 bags first round, 9-11 the second round and just finished 7 as part of another therapy.

      I see a lot of people have already replied with a lot of helpful information. So I'll just say what I think is the best part and that is that the effects are temporary and go away very quickly, usually within a couple days after the treatment. I had the usual liquid weight gain, vivid dreams, fatigue and my legs got all bloodshot from the low platelets. But all went away in a couple days. The only thing that lingered with me was peeling, the worst was about 5 days after. I was using a pretty good non-oily lotion and taking oatmeal baths. It only itched the first couple days but by about 2 weeks all dryness/peeling was gone/ just a little flakiness on fingers and feet. 

      The IL-2 I just finished.. the only one side effect I had was liquid in my lungs, and it went away in a couple days with breathing exercises, lasix and keeping my torso upright as much as possible.

      Hope this was helpful and informative, any other questions feel free to let me know.

      Just remember the effects are very temporary. Something a lot of treaments can't claim. And althogh it's rough, it might be a cure (finger crossed for you) and I'm sure that would be worth every little unpleasant feeling. :) Wishing you the best. -Kevin

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      himynameiskevin
      Participant

      Hi, I did IL-2. 14 bags first round, 9-11 the second round and just finished 7 as part of another therapy.

      I see a lot of people have already replied with a lot of helpful information. So I'll just say what I think is the best part and that is that the effects are temporary and go away very quickly, usually within a couple days after the treatment. I had the usual liquid weight gain, vivid dreams, fatigue and my legs got all bloodshot from the low platelets. But all went away in a couple days. The only thing that lingered with me was peeling, the worst was about 5 days after. I was using a pretty good non-oily lotion and taking oatmeal baths. It only itched the first couple days but by about 2 weeks all dryness/peeling was gone/ just a little flakiness on fingers and feet. 

      The IL-2 I just finished.. the only one side effect I had was liquid in my lungs, and it went away in a couple days with breathing exercises, lasix and keeping my torso upright as much as possible.

      Hope this was helpful and informative, any other questions feel free to let me know.

      Just remember the effects are very temporary. Something a lot of treaments can't claim. And althogh it's rough, it might be a cure (finger crossed for you) and I'm sure that would be worth every little unpleasant feeling. :) Wishing you the best. -Kevin

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