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Done W/ First Week of IL-2

Forums General Melanoma Community Done W/ First Week of IL-2

  • Post
    chet
    Participant

    So I just got done with my first week of high dose IL-2. It was pretty rough but I managed to pull through. I did 9 bags total and wanted to get to 14 but my doctor said it was getting too toxic. She said it was not so much about the quantity but more so about my immune response. The worst part of the whole week were the rigors. The nurses would give me a shot of demerol right when I was starting to feel it coming on but it made me super nauseous to where I vomited a few times but they gave me a shot of phenergan right after to combat that. The third night was the worst for me.

    So I just got done with my first week of high dose IL-2. It was pretty rough but I managed to pull through. I did 9 bags total and wanted to get to 14 but my doctor said it was getting too toxic. She said it was not so much about the quantity but more so about my immune response. The worst part of the whole week were the rigors. The nurses would give me a shot of demerol right when I was starting to feel it coming on but it made me super nauseous to where I vomited a few times but they gave me a shot of phenergan right after to combat that. The third night was the worst for me. My allergies made it difficult for me to breathe that night so they had to give me oxygen. I don't really remember much from that night but the nurse told me I had a heart rate of 190 that night which was like me running a marathon. I'm at home recouping and I go back in on Feb. 7 for my next cycle. I'm not experiencing rashes like a lot of others but I'm peeling a lot along my ears and on my neck. My lips are super cracked and feel gross. I didn't sleep a wink last night. I heard that the IL-2 causes insomnia. Any truth to that? Anyway, how long until my skin goes back to normal? I don't like feeling crusty lol.

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  • Replies
      glewis923
      Participant

      Best of luck Chet.  I'm considering IL-2 for my multiple lung "nodules" (Tumors).  Now the biggest ones (11 mm- three or four) are hanging stable on 3-chemo mix, but IL-2 may be next as it could possibly be a long term fix.  Here's to hoping.

      Love ALL, Grady.

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      glewis923
      Participant

      Best of luck Chet.  I'm considering IL-2 for my multiple lung "nodules" (Tumors).  Now the biggest ones (11 mm- three or four) are hanging stable on 3-chemo mix, but IL-2 may be next as it could possibly be a long term fix.  Here's to hoping.

      Love ALL, Grady.

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      debbieVA
      Participant

      Hi Chet…

       

      Glad to hear you have week one in the bag.  9 infusions is very respectable.  You might notice the side effects intensify with each ensuing week of treatment.  

       

      Post treatment insomnia is very common.  See if you MD will write you a script for a sleeping pill.  I had trouble sitting still.  i'd lay down…then get up and walk…and cycle thru again.  Pretty much spent 4 days up and down.  

       

      Rest up…you deserve it….You've worked hard!

       

       Best to you….

       

      Debbie Stage 4 NED Complete Responder to IL-2 

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      debbieVA
      Participant

      Hi Chet…

       

      Glad to hear you have week one in the bag.  9 infusions is very respectable.  You might notice the side effects intensify with each ensuing week of treatment.  

       

      Post treatment insomnia is very common.  See if you MD will write you a script for a sleeping pill.  I had trouble sitting still.  i'd lay down…then get up and walk…and cycle thru again.  Pretty much spent 4 days up and down.  

       

      Rest up…you deserve it….You've worked hard!

       

       Best to you….

       

      Debbie Stage 4 NED Complete Responder to IL-2 

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        chet
        Participant

        Thanks, Debbie! I really hope and pray I'm a complete responder like you are. I wanted to push for more than 9 bags but the doctor wouldn't let me. Hopefully my body will be able to tolerate more the next go round. When you say the side effects intensify with each cycle, do you during or after you're discharged? This insomnia is driving me nuts. I'm going to get my Ambien tomorrow and knock out for a whole day lol.

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        chet
        Participant

        Thanks, Debbie! I really hope and pray I'm a complete responder like you are. I wanted to push for more than 9 bags but the doctor wouldn't let me. Hopefully my body will be able to tolerate more the next go round. When you say the side effects intensify with each cycle, do you during or after you're discharged? This insomnia is driving me nuts. I'm going to get my Ambien tomorrow and knock out for a whole day lol.

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      KatyWI
      Participant

      Hi Chet, congrats on the first week!

      I took 59 bags or so of IL-2 over 6 cycles last year.  I found that the insomnia lasted a few days.  As for the skin, unfortunately I did find it got worse as the cycles wore on.  The first two cycles weren't bad…just peeled and it was done.  Try lotions…lots of people swear by Sarna or Gold Bond; for me Vaseline Sheer Infusion was the best.  It's a somewhat heavy moisturizer you can get at the drug or grocery store – about six bucks around here and would last me close to a week.  It comes in a few scents; the mineral one is probalby the least girly.  Also, bite the bullet and use a really moisturizing shower gel, like unscented Dove.  It helps too. 

      Now, in the mean time…GO T-CELLS GO!

      KatyWI

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      KatyWI
      Participant

      Hi Chet, congrats on the first week!

      I took 59 bags or so of IL-2 over 6 cycles last year.  I found that the insomnia lasted a few days.  As for the skin, unfortunately I did find it got worse as the cycles wore on.  The first two cycles weren't bad…just peeled and it was done.  Try lotions…lots of people swear by Sarna or Gold Bond; for me Vaseline Sheer Infusion was the best.  It's a somewhat heavy moisturizer you can get at the drug or grocery store – about six bucks around here and would last me close to a week.  It comes in a few scents; the mineral one is probalby the least girly.  Also, bite the bullet and use a really moisturizing shower gel, like unscented Dove.  It helps too. 

      Now, in the mean time…GO T-CELLS GO!

      KatyWI

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      lhaley
      Participant

      Glad to hear your home and got through the first week.  Hopefully in a day or two you'll be feeling much better.

      Linda

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      lhaley
      Participant

      Glad to hear your home and got through the first week.  Hopefully in a day or two you'll be feeling much better.

      Linda

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      kylez
      Participant

      Good job Chet!

      Kaiser gave me a prescription for Atarax aka Hycroxyzine after the 3rd or 4th cycle to help w/ sleeping. It reduces the itching too, overnight, if you have that side effect. It doesn't dry you out as much as benadryl either and its sleeping affect is stronger — really strong for me. Might be something to ask your doc/pharmacist about when you back for the second cycle.

      If you have benadryl you could try taking one overnight for the time being.

      You're doing great!

      – Kyle

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      kylez
      Participant

      Good job Chet!

      Kaiser gave me a prescription for Atarax aka Hycroxyzine after the 3rd or 4th cycle to help w/ sleeping. It reduces the itching too, overnight, if you have that side effect. It doesn't dry you out as much as benadryl either and its sleeping affect is stronger — really strong for me. Might be something to ask your doc/pharmacist about when you back for the second cycle.

      If you have benadryl you could try taking one overnight for the time being.

      You're doing great!

      – Kyle

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        chet
        Participant

        Thanks, Kyle! I've tried taking Benadryl these past couple of nights for the itching and to knock me out but it hasn't helped at all in the sleep department. I'm going to call my doc tomorrow to get a prescription of Ambien.

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        chet
        Participant

        Thanks, Kyle! I've tried taking Benadryl these past couple of nights for the itching and to knock me out but it hasn't helped at all in the sleep department. I'm going to call my doc tomorrow to get a prescription of Ambien.

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      Angela C
      Participant

      Hi Chet. I also just finished my first round of IL2. I had my first week January 10th and go back in the hospital tomorrow for round two. Congrats on getting through week one!!

      I had hallucinations, crazy dreams and then that was followed up with insomnia. I ended up getting a prescription for ativan, an anti-anxiety med. It helped me to sleep. I only took it for two days and then stopped, but haven't gotten rid of the medicine head feeling yet.

      I also have peeling skin. It's like peeling after a sunburn. My face and neck peeled a ton and my scalp is super dry and crusty. I also had problems with my mouth and tongue. It was like my tongue swelled up and dried out. Not fun! I have some prevention mouthwash that I'm going to try this time around.

      It's a little less scary going back in tomorrow since I know what to expect this time. Hopefully the side effects aren't too much worst for this second round. And then I know I only have about four days of feeling like crap at home and then recovery starts. I'm really happy that this next time I will go home without the PICC line and knowing I have two months of no drugs before the next round!!

      Did you put on a lot of water weight? I put on 18 pounds of water weight and now a week out, I have lost 22 pounds! It is crazy that you can gain and lose that much weight in such a short amount of time.

      Are you in the ICU? I am. My treatment is at Loyola in Chicago. How about yours?

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      Angela C
      Participant

      Hi Chet. I also just finished my first round of IL2. I had my first week January 10th and go back in the hospital tomorrow for round two. Congrats on getting through week one!!

      I had hallucinations, crazy dreams and then that was followed up with insomnia. I ended up getting a prescription for ativan, an anti-anxiety med. It helped me to sleep. I only took it for two days and then stopped, but haven't gotten rid of the medicine head feeling yet.

      I also have peeling skin. It's like peeling after a sunburn. My face and neck peeled a ton and my scalp is super dry and crusty. I also had problems with my mouth and tongue. It was like my tongue swelled up and dried out. Not fun! I have some prevention mouthwash that I'm going to try this time around.

      It's a little less scary going back in tomorrow since I know what to expect this time. Hopefully the side effects aren't too much worst for this second round. And then I know I only have about four days of feeling like crap at home and then recovery starts. I'm really happy that this next time I will go home without the PICC line and knowing I have two months of no drugs before the next round!!

      Did you put on a lot of water weight? I put on 18 pounds of water weight and now a week out, I have lost 22 pounds! It is crazy that you can gain and lose that much weight in such a short amount of time.

      Are you in the ICU? I am. My treatment is at Loyola in Chicago. How about yours?

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        chet
        Participant

        Great job on getting through your first week. Looks like we'll be taking this beast on about the same time. My hallucinations were so weird lol, I don't even wanna start. My doctor supposedly called in a prescription of Ambien when I was discharged on Friday but CVS never got it so I haven't slept a wink since Friday night. I'm going nuts.

        I didn't have an itch problem during my first cycle, it was moreso after I was released that I had a minor itch. It was only bad last night as I broke out in hives but it's gone as of right now, but I heard it gets worse as the cycles go on:/ The hospital gave me this lotion that feels like menthol on my skin which has helped with the itching. I only have a little peeling on my neck and ears, and around my nose. My face is starting to regain its moisture. Not peeling anywhere else. The edges of my mouth are starting to heal. They were dried and cracked which made it difficult to eat cause it would feel like I was re-opening the wound. My tongue also started to feel like it was cut up but that's gone now.

        I'm surprised they kept the PICC line in you. They took mine out when I left.

        Surprisingly I didn't put on much water weight because I urinated out my fluids a lot during the week, which the nurses were really happy about because it showed my kidneys were still functioning.

        And yes, I was in the ICU at Methodist Hospital in San Antonio, TX. I'm going back in Feb. 7 for cycle 2 so I'm using these 2 weeks to really build up my immune system. I already feel 85% better after being out the hospital for 3 days. Best of luck to you and I'll be praying for you. I know you can do it! Keep me posted!!!

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        chet
        Participant

        Great job on getting through your first week. Looks like we'll be taking this beast on about the same time. My hallucinations were so weird lol, I don't even wanna start. My doctor supposedly called in a prescription of Ambien when I was discharged on Friday but CVS never got it so I haven't slept a wink since Friday night. I'm going nuts.

        I didn't have an itch problem during my first cycle, it was moreso after I was released that I had a minor itch. It was only bad last night as I broke out in hives but it's gone as of right now, but I heard it gets worse as the cycles go on:/ The hospital gave me this lotion that feels like menthol on my skin which has helped with the itching. I only have a little peeling on my neck and ears, and around my nose. My face is starting to regain its moisture. Not peeling anywhere else. The edges of my mouth are starting to heal. They were dried and cracked which made it difficult to eat cause it would feel like I was re-opening the wound. My tongue also started to feel like it was cut up but that's gone now.

        I'm surprised they kept the PICC line in you. They took mine out when I left.

        Surprisingly I didn't put on much water weight because I urinated out my fluids a lot during the week, which the nurses were really happy about because it showed my kidneys were still functioning.

        And yes, I was in the ICU at Methodist Hospital in San Antonio, TX. I'm going back in Feb. 7 for cycle 2 so I'm using these 2 weeks to really build up my immune system. I already feel 85% better after being out the hospital for 3 days. Best of luck to you and I'll be praying for you. I know you can do it! Keep me posted!!!

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        Angela C
        Participant

        Hey there.

        I am back in the hospital. Just had my first bag about thirty minutes ago. =)

        I hear you about the hallucinations/crazy dreams and not sleeping. Not fun at all! I'm really dreading that here again in a few days. But, it's nice that the recovery is pretty quick and I know that there will be an end in sight. I'm hoping that the ativan will help me to sleep this time. If not, then I'll get the ambien prescription filled.

        It seems like you are in better shape that I was right after getting out of the hospital. It took me a few days before I could get on the computer. I had really blurry vision and couldn't look at my cell phone or computer for a few days. That part is pretty frustrating as well! I'm still dealing with this strange medicine head feeling. I was really hoping that I would feel 100% myself before starting up again, but that didn't happen.

        So, it sounds like you have two weeks off between cycles? I only have one. Maybe that is why my PICC line stayed in. I wonder why it is different for us. Hmm.

        There is another guy in here getting IL2, but his is for Renal Cell Carcinoma. I got to meet him today and talk to him a little bit. This is his first round. So, I got to give him some encouraging words and I think he and his wife were happy to get to talk to me. That was pretty cool to get to talk with him.

        Enjoy your time away from the hospital. I'll try and let you know how I'm doing after round 2.

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        Angela C
        Participant

        Hey there.

        I am back in the hospital. Just had my first bag about thirty minutes ago. =)

        I hear you about the hallucinations/crazy dreams and not sleeping. Not fun at all! I'm really dreading that here again in a few days. But, it's nice that the recovery is pretty quick and I know that there will be an end in sight. I'm hoping that the ativan will help me to sleep this time. If not, then I'll get the ambien prescription filled.

        It seems like you are in better shape that I was right after getting out of the hospital. It took me a few days before I could get on the computer. I had really blurry vision and couldn't look at my cell phone or computer for a few days. That part is pretty frustrating as well! I'm still dealing with this strange medicine head feeling. I was really hoping that I would feel 100% myself before starting up again, but that didn't happen.

        So, it sounds like you have two weeks off between cycles? I only have one. Maybe that is why my PICC line stayed in. I wonder why it is different for us. Hmm.

        There is another guy in here getting IL2, but his is for Renal Cell Carcinoma. I got to meet him today and talk to him a little bit. This is his first round. So, I got to give him some encouraging words and I think he and his wife were happy to get to talk to me. That was pretty cool to get to talk with him.

        Enjoy your time away from the hospital. I'll try and let you know how I'm doing after round 2.

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      Tracy Chicago
      Participant

      Hi Chet! Just wanted to say congrats on completing the first round! I haven't done IL2 and think  you're very brave (and everyone else who has done it too).

      A great moisturizer is vanicream. I can only find it online through drugstore.com but it is the best moisturizer I have ever used and it has no scent. Mabye if you used it every day before your next round, you wouldn't peel as bad?

       

      Good luck with your journey!

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      Tracy Chicago
      Participant

      Hi Chet! Just wanted to say congrats on completing the first round! I haven't done IL2 and think  you're very brave (and everyone else who has done it too).

      A great moisturizer is vanicream. I can only find it online through drugstore.com but it is the best moisturizer I have ever used and it has no scent. Mabye if you used it every day before your next round, you wouldn't peel as bad?

       

      Good luck with your journey!

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