Interleukin 2 at UVA

Sure can, I had 49 bags from Dr Weiss.  My experience is in my profile.  You are welcome to red it and we can talk as much as you like.  Tough but definitely do-able.  Dr Weiss has been doing this for 32 years.  He's very conciouencious.  Is he your onc or is Dr Grosh?

Sure can, I had 49 bags from Dr Weiss.  My experience is in my profile.  You are welcome to red it and we can talk as much as you like.  Tough but definitely do-able.  Dr Weiss has been doing this for 32 years.  He's very conciouencious.  Is he your onc or is Dr Grosh?

Sure can, I had 49 bags from Dr Weiss.  My experience is in my profile.  You are welcome to red it and we can talk as much as you like.  Tough but definitely do-able.  Dr Weiss has been doing this for 32 years.  He's very conciouencious.  Is he your onc or is Dr Grosh?

I had IL-2 from Dec 2012 through May 1013. I averaged 9 doses/week but please do not put any relevence on the number of doses you, or anyone else gets. We all keep count- for something to do, to compare to previous weeks, etc- but really it means nothing. What matters is your body's reaction to the drug. I was told "We are going to make you as sick as we can while still being safe, then keep you that sick for the week." That's a pretty acurate description of what happens- they give you a dose every 8 hours until you are sicker than you've ever been in your life, then they may ease up and skip a dose. I thought "I'm tough, it won't be THAT bad"… Trust me, it is. There really is no way to impress that on people until you go through it. 

I learned after the first week to be very careful what I ate once I got to the hospital. It usually took about 4 doses before I really started feeling bad, but I found out it comes on fast when it comes. It's better to go easy even when you feel good. I commonly had vomiting (sometimes with warning, sometimes without) and really severe diarrhea. Typically I would get a severe fever/chills after 1-3 doses/week and gained 10-15 lb of retained fluid each week (don't worry, it'll all come off really fast during the week off/following each week in the hospital. I also had to have my magnesium, bicarbonate and occasionally my potassium supplemented. My skin, as others have mentioned got red, itchy, and very dry. Benedryl can help with that after you get home (I was on it automatically when I checked in each week) but the hospital I was in also automatically gave us a jar of heavy duty moisturizer because skin issues are so common. It felt to me like a severe sunburn. It was always worse the second week of the cycle, and got worse quicker with each cycle. 

Biggest piece of advice: As soon as you think you're having a side effect tell a nurse. Don't try to tuff it out. I learned the hard way that that wasn't worth it either. Get out of bed and walk whenever you can- I tried to go for at least 3 walks per day and tried to walk for 20 min each time. Walking helps, but you'll have to learn when to time them in relation to your  doses so you don't pass out. I also found out that with respect to nausea for me it was more important to time my meals (or attempts at meals) for 1/2 hr after my anti-emetic (anti-nausea) medication rather than trying to time it shortly before the doses. Speaking of meals- bland and small is best- soup (or broth if it's offered) and plain rice or un-buttered noodles were my staple for lunch and dinner, when I was able I ate plain oatmeal or cream of wheat (no sugar) for breakfast. You may find that popsicles, especially all juice ones, may taste good every once in a while- we were able to keep a box in a freezer on the floor.  

Do your best to drink lots of water, even though you're going to puff up like the marshmallow man, you need the fluids. Bring some entertainment- computer, books, crosswords, ect- by the end of the week you may be mostly sleeping (even when I wasn't I couldn't focus or think well enough to really do much of anything) but early in the week you're going to want something to do. I had a small tote back that really didn't get unpacked from week to week- sometimes it got supplemented but never unpacked- it was my entertainment bag. It had puzzle books, reading books, DVD's, etc. I think the only other advice I have is wear the loosest most comfy clothes you've got. 

Mostly the first week is a learning experience and then once you get through that week and know how your body is going to react you'll feel much more prepared for the rest of the therapy. Definitely doable- you'll feel like heck while your there, but for me I recovered so fast I almost forgot how terrible I felt while I was there… almost. 

Oh, and one last note to this very long reply- if you have lympedema expect that to really blow up like never before. If you know you have or have had lympedema, tell the nurses and be prepared to wrap limbs yourself, or have them set up appointments for you with a physical therapist to help you wrap and keep it somewhat under control. If, like me, you have lympedema in an arm, have them put your blood pressure cuff on the other arm- I made the mistake of using my lympedema arm the first week and after that it was left arm only. The cuff makes lymphedema worse, faster.

Best of luck and hoping you get the holy grail of long term control

I had IL-2 from Dec 2012 through May 1013. I averaged 9 doses/week but please do not put any relevence on the number of doses you, or anyone else gets. We all keep count- for something to do, to compare to previous weeks, etc- but really it means nothing. What matters is your body's reaction to the drug. I was told "We are going to make you as sick as we can while still being safe, then keep you that sick for the week." That's a pretty acurate description of what happens- they give you a dose every 8 hours until you are sicker than you've ever been in your life, then they may ease up and skip a dose. I thought "I'm tough, it won't be THAT bad"… Trust me, it is. There really is no way to impress that on people until you go through it. 

I learned after the first week to be very careful what I ate once I got to the hospital. It usually took about 4 doses before I really started feeling bad, but I found out it comes on fast when it comes. It's better to go easy even when you feel good. I commonly had vomiting (sometimes with warning, sometimes without) and really severe diarrhea. Typically I would get a severe fever/chills after 1-3 doses/week and gained 10-15 lb of retained fluid each week (don't worry, it'll all come off really fast during the week off/following each week in the hospital. I also had to have my magnesium, bicarbonate and occasionally my potassium supplemented. My skin, as others have mentioned got red, itchy, and very dry. Benedryl can help with that after you get home (I was on it automatically when I checked in each week) but the hospital I was in also automatically gave us a jar of heavy duty moisturizer because skin issues are so common. It felt to me like a severe sunburn. It was always worse the second week of the cycle, and got worse quicker with each cycle. 

Biggest piece of advice: As soon as you think you're having a side effect tell a nurse. Don't try to tuff it out. I learned the hard way that that wasn't worth it either. Get out of bed and walk whenever you can- I tried to go for at least 3 walks per day and tried to walk for 20 min each time. Walking helps, but you'll have to learn when to time them in relation to your  doses so you don't pass out. I also found out that with respect to nausea for me it was more important to time my meals (or attempts at meals) for 1/2 hr after my anti-emetic (anti-nausea) medication rather than trying to time it shortly before the doses. Speaking of meals- bland and small is best- soup (or broth if it's offered) and plain rice or un-buttered noodles were my staple for lunch and dinner, when I was able I ate plain oatmeal or cream of wheat (no sugar) for breakfast. You may find that popsicles, especially all juice ones, may taste good every once in a while- we were able to keep a box in a freezer on the floor.  

Do your best to drink lots of water, even though you're going to puff up like the marshmallow man, you need the fluids. Bring some entertainment- computer, books, crosswords, ect- by the end of the week you may be mostly sleeping (even when I wasn't I couldn't focus or think well enough to really do much of anything) but early in the week you're going to want something to do. I had a small tote back that really didn't get unpacked from week to week- sometimes it got supplemented but never unpacked- it was my entertainment bag. It had puzzle books, reading books, DVD's, etc. I think the only other advice I have is wear the loosest most comfy clothes you've got. 

Mostly the first week is a learning experience and then once you get through that week and know how your body is going to react you'll feel much more prepared for the rest of the therapy. Definitely doable- you'll feel like heck while your there, but for me I recovered so fast I almost forgot how terrible I felt while I was there… almost. 

Oh, and one last note to this very long reply- if you have lympedema expect that to really blow up like never before. If you know you have or have had lympedema, tell the nurses and be prepared to wrap limbs yourself, or have them set up appointments for you with a physical therapist to help you wrap and keep it somewhat under control. If, like me, you have lympedema in an arm, have them put your blood pressure cuff on the other arm- I made the mistake of using my lympedema arm the first week and after that it was left arm only. The cuff makes lymphedema worse, faster.

Best of luck and hoping you get the holy grail of long term control

I had IL-2 from Dec 2012 through May 1013. I averaged 9 doses/week but please do not put any relevence on the number of doses you, or anyone else gets. We all keep count- for something to do, to compare to previous weeks, etc- but really it means nothing. What matters is your body's reaction to the drug. I was told "We are going to make you as sick as we can while still being safe, then keep you that sick for the week." That's a pretty acurate description of what happens- they give you a dose every 8 hours until you are sicker than you've ever been in your life, then they may ease up and skip a dose. I thought "I'm tough, it won't be THAT bad"… Trust me, it is. There really is no way to impress that on people until you go through it. 

I learned after the first week to be very careful what I ate once I got to the hospital. It usually took about 4 doses before I really started feeling bad, but I found out it comes on fast when it comes. It's better to go easy even when you feel good. I commonly had vomiting (sometimes with warning, sometimes without) and really severe diarrhea. Typically I would get a severe fever/chills after 1-3 doses/week and gained 10-15 lb of retained fluid each week (don't worry, it'll all come off really fast during the week off/following each week in the hospital. I also had to have my magnesium, bicarbonate and occasionally my potassium supplemented. My skin, as others have mentioned got red, itchy, and very dry. Benedryl can help with that after you get home (I was on it automatically when I checked in each week) but the hospital I was in also automatically gave us a jar of heavy duty moisturizer because skin issues are so common. It felt to me like a severe sunburn. It was always worse the second week of the cycle, and got worse quicker with each cycle. 

Biggest piece of advice: As soon as you think you're having a side effect tell a nurse. Don't try to tuff it out. I learned the hard way that that wasn't worth it either. Get out of bed and walk whenever you can- I tried to go for at least 3 walks per day and tried to walk for 20 min each time. Walking helps, but you'll have to learn when to time them in relation to your  doses so you don't pass out. I also found out that with respect to nausea for me it was more important to time my meals (or attempts at meals) for 1/2 hr after my anti-emetic (anti-nausea) medication rather than trying to time it shortly before the doses. Speaking of meals- bland and small is best- soup (or broth if it's offered) and plain rice or un-buttered noodles were my staple for lunch and dinner, when I was able I ate plain oatmeal or cream of wheat (no sugar) for breakfast. You may find that popsicles, especially all juice ones, may taste good every once in a while- we were able to keep a box in a freezer on the floor.  

Do your best to drink lots of water, even though you're going to puff up like the marshmallow man, you need the fluids. Bring some entertainment- computer, books, crosswords, ect- by the end of the week you may be mostly sleeping (even when I wasn't I couldn't focus or think well enough to really do much of anything) but early in the week you're going to want something to do. I had a small tote back that really didn't get unpacked from week to week- sometimes it got supplemented but never unpacked- it was my entertainment bag. It had puzzle books, reading books, DVD's, etc. I think the only other advice I have is wear the loosest most comfy clothes you've got. 

Mostly the first week is a learning experience and then once you get through that week and know how your body is going to react you'll feel much more prepared for the rest of the therapy. Definitely doable- you'll feel like heck while your there, but for me I recovered so fast I almost forgot how terrible I felt while I was there… almost. 

Oh, and one last note to this very long reply- if you have lympedema expect that to really blow up like never before. If you know you have or have had lympedema, tell the nurses and be prepared to wrap limbs yourself, or have them set up appointments for you with a physical therapist to help you wrap and keep it somewhat under control. If, like me, you have lympedema in an arm, have them put your blood pressure cuff on the other arm- I made the mistake of using my lympedema arm the first week and after that it was left arm only. The cuff makes lymphedema worse, faster.

Best of luck and hoping you get the holy grail of long term control