Talk to me about IL2

You can also do a search for KimK as she had some good tips as well. As the others have said-don't wait. As soon as you are able, start IL-2.

You can also do a search for KimK as she had some good tips as well. As the others have said-don't wait. As soon as you are able, start IL-2.

You can also do a search for KimK as she had some good tips as well. As the others have said-don't wait. As soon as you are able, start IL-2.

Well, for my husband, it was high fever (104ish controlled with advil/tylenol), rigors (controlled with demoral/morphine), body aches (hydrocodine and an anti-athritic med),  low blood pressure (dizziness), high heart rate, and general fatigue.  Once the side effects stopped, he was much better and seemed to bounce back quite quickly.  By Tuesday/Wednesday of the following week he was back to normal.  Sucks when you are going through it, but manageable.

He went in at 8 on a Monday and usually received his last dose on Thursday, so was released on Friday.  Most people stay until Saturday though.  His body could only handle so much.  And when he said he was "done", he was.

Best of luck to you, and let us know what you decide…

Maria

Well, for my husband, it was high fever (104ish controlled with advil/tylenol), rigors (controlled with demoral/morphine), body aches (hydrocodine and an anti-athritic med),  low blood pressure (dizziness), high heart rate, and general fatigue.  Once the side effects stopped, he was much better and seemed to bounce back quite quickly.  By Tuesday/Wednesday of the following week he was back to normal.  Sucks when you are going through it, but manageable.

He went in at 8 on a Monday and usually received his last dose on Thursday, so was released on Friday.  Most people stay until Saturday though.  His body could only handle so much.  And when he said he was "done", he was.

Best of luck to you, and let us know what you decide…

Maria

Well, for my husband, it was high fever (104ish controlled with advil/tylenol), rigors (controlled with demoral/morphine), body aches (hydrocodine and an anti-athritic med),  low blood pressure (dizziness), high heart rate, and general fatigue.  Once the side effects stopped, he was much better and seemed to bounce back quite quickly.  By Tuesday/Wednesday of the following week he was back to normal.  Sucks when you are going through it, but manageable.

He went in at 8 on a Monday and usually received his last dose on Thursday, so was released on Friday.  Most people stay until Saturday though.  His body could only handle so much.  And when he said he was "done", he was.

Best of luck to you, and let us know what you decide…

Maria

Dawn,

My husband did it almost 4 years ago. It really worked for him, he had extreme peeling of his skin everywhere – had to take oatmeal baths for the itching. He put on a lot of water weight but they give you lasik (sp?) for that. He did have hives at one point too. The other things he experienced were nausea and a bit of confusion, chills, rigors.

Have someone there to get you warm blankets and give you water (bring your own bottled water) Bananas also helped. Jane's tip sheet will really help.

He was fine after a few days of being out of the hospital and would actually go back to work. It's just hard when your in the hospital because you don't sleep an of course all of the symptoms listed above. I can't express enough to have someone with you to call the nurse when needed for nausea medicine and other needs.

Rebecca

Dawn,

My husband did it almost 4 years ago. It really worked for him, he had extreme peeling of his skin everywhere – had to take oatmeal baths for the itching. He put on a lot of water weight but they give you lasik (sp?) for that. He did have hives at one point too. The other things he experienced were nausea and a bit of confusion, chills, rigors.

Have someone there to get you warm blankets and give you water (bring your own bottled water) Bananas also helped. Jane's tip sheet will really help.

He was fine after a few days of being out of the hospital and would actually go back to work. It's just hard when your in the hospital because you don't sleep an of course all of the symptoms listed above. I can't express enough to have someone with you to call the nurse when needed for nausea medicine and other needs.

Rebecca

It's in hospital 5days/1 week, 1 week home to recuperate, repeat.  for me, I was able to recuperate after the first week in time to go back for the second…after the second it was after 2 full weeks that I was able to return to work, and even that was about 3-5 days too soon for me.  Every person/body responds differently…i didn't get so bad during the actual hospital stay (it's all relative, I was still miserable), but my recuperation was harder than some. 

As hard as it was, I just had my scans done, and I'm hoping for stable/improvement so I can go back for yet more!

DO NOT let life get in the way. 

hope this helps,

karen

It's in hospital 5days/1 week, 1 week home to recuperate, repeat.  for me, I was able to recuperate after the first week in time to go back for the second…after the second it was after 2 full weeks that I was able to return to work, and even that was about 3-5 days too soon for me.  Every person/body responds differently…i didn't get so bad during the actual hospital stay (it's all relative, I was still miserable), but my recuperation was harder than some. 

As hard as it was, I just had my scans done, and I'm hoping for stable/improvement so I can go back for yet more!

DO NOT let life get in the way. 

hope this helps,

karen

It's in hospital 5days/1 week, 1 week home to recuperate, repeat.  for me, I was able to recuperate after the first week in time to go back for the second…after the second it was after 2 full weeks that I was able to return to work, and even that was about 3-5 days too soon for me.  Every person/body responds differently…i didn't get so bad during the actual hospital stay (it's all relative, I was still miserable), but my recuperation was harder than some. 

As hard as it was, I just had my scans done, and I'm hoping for stable/improvement so I can go back for yet more!

DO NOT let life get in the way. 

hope this helps,

karen

Dawn,

My husband did it almost 4 years ago. It really worked for him, he had extreme peeling of his skin everywhere – had to take oatmeal baths for the itching. He put on a lot of water weight but they give you lasik (sp?) for that. He did have hives at one point too. The other things he experienced were nausea and a bit of confusion, chills, rigors.

Have someone there to get you warm blankets and give you water (bring your own bottled water) Bananas also helped. Jane's tip sheet will really help.

He was fine after a few days of being out of the hospital and would actually go back to work. It's just hard when your in the hospital because you don't sleep an of course all of the symptoms listed above. I can't express enough to have someone with you to call the nurse when needed for nausea medicine and other needs.

Rebecca

Here is a rundown of the nuts of bolts of hi dose IL-2.

First you have to be deemed medically able to receive hi dose IL2..  

Pre-screening qualifications are:

1) Cardiac Stress test

2)Pulmonary lung function test

3)Blood gas test

4)Chest x-ray

Treatments typically begin on a Monday and are most often (as they should be) administered in an ICU unit.

First, interventional radiology will insert a catheter of some sort.  Mine was in my neck and had three lumens (ports) one to receive the drug, one for pulling blood and one spare.

Blood is drawn and you are hooked up to several monitors.  Then you wait and chill.  The nurses want to get a solid base line read on their monitors and your blood work pre-infusion.  Your pulse, respiration, bp, o2 will be constantly monitored and is your urine output.

Probably mid to late afternoon, the nurses will check you over again and then order up the IL2.  IL2 is around 8k a bag , has to be compounded in the lab and has a very short shelf life, so it's about an hour or so before it arrives to your iv pole, while you wait, a saline or some type of fluid drip will probably be started.

From this point, ALL of your urine output will be measured, so drink up.

The administration ideally is one bag every 8 hours if your body permits.  This will vary.

At first, the biggest sensation will be the onset of rigors which is fever and chills.  The chills will probably be dramatic and sudden.  While wretching with chills, nausea is not uncommon.  The nurses will counter act the chills with demorol, which is soooooooooooooo warm and soothing, maybe some compazine to cope with the nausea.

Body temp will be ginto spike and gradually, and increasingly the skin will begin to turn a cherry red and due to Capillary Leak Syndrome, the body will begin to swell with fluid buildup.  Slowly, as the infusions continue, the body will begin to reek  of a chemical odor, as the eyes tear, the fluid burns and itches.  Not to be gross, but your urine will smell dreadfull and turn increasing dark.  The rectum may begin to "weep" with the fluid causing burning and itching.  The lips begin to dry and crack at the edges as a skin crawling itch slowly builds.  The body sweats and that sweat feels land smells ike your body is becoming a toxic waste dump.

Blood pressure will drop, oxygen levels will tank, urine output slows or stops.  Appetite disappears.  The ability to focus and concentrate diminishes.

All this will compound and increase as the infusions continue.

If your urine output stops or slows too much, so will the infusions until you stabilize.

At maximum toxcisity, the brain loses touch with reality and one wil begin to hallucinate.  That is usually, if not before, the stopping point.

At cessation, fluids are pushed until your vitals stabilize and come to your senses.

Moving out of ICU, they will try to get you to eat, take fluids and make certain your vitals are stable………..usually a day or two before release.

You will be given lasik to sluff of the fluid buildup…………a water gain of 20 or more pounds is not unusual.  The skin will continually itch and peel in a dramatic way.  After all this, you go home and………….

Rest for a week, during which time most things other than the skin itch and peel will go away.

Then you do it again.  Chances are good the side effects will be more dramatic.

Then you go home and wait two weeks then scan.

So, in six weeks you know your response level.

Then, in the spirit of a good party…………….you can do that same cycle all over again !

My doc and the ICU nurses still laugh about when I was "confused" as they like to call it when I was dancing naked on my bed , smoking a cigarette with a o2 canula in my nose.

So, that's some of what I remember and I've highlighted only the easy parts.

But it IS doable.

That's my story and I'm sticking to it.

oh,,,,,,,,,,,,,,,,,,,,,,,BIG P.S.  the number of bags is irrelevant

Cheers,

Charlie S

Poor Charlie, sounds like you had a worse time than I did.  The only hullucination I had in my 6 weeks of il-2 was after the first or second week when i got home.  That gal says she was not running around my house in only her panties!  Either way the memory is great!

    Some places like UVA have a ward with specially trained nurses for handling the IL-2 administration rather than using the ICU.. One advantage is that while some ICU's do  not allow overnight guests, UVA even has a nice place for your guest to sleep and they even provide pillows and blankets for them.

    My O2 stayed up ok, but my blood pressure sure tanked.  At below 90 is where they hold off bags until it comes back up.  (Licorace or licorace tea will help hold up the blood pressure.)

     I never did figure out if I lost my appetite or if it was just that after 2-3 days of IL-2 all food tasted like cardboard.  I never did develop a taste for cardboard.

    I took my laptop and managd to chat and post almost very day while I was in the treatments.  Loved that hospital high speed wi-fi.

    The two additional tests they did on me was to run an MRI to see if they could find anything in my head.(No comments?)

and the kidney test (blood test for creatinine).  The creatinine is run repeatedly to check for kidney function as well as their keeping tract of the urine output..

    I loved the quick turnaround in learning if the IL-2 was working as well as the returning to near normal the 5th day after release from the weeks treatment. (Except for the itch and thin skin.)

I considered it very doable and would be willing to do more again.  (Not FUn but doable!)

Good luck to all going this route.  i have read of trials whre they are trying diferent things with IL-2 that seem to be improviing the success rate over that of IL-2 alone.  Just get a pro that knows what he is doing for the administration of the IL-2 and knows how to watch for and treat the side-effects rapidily when they first occur.

Geez, I forgot about Dave's hallucinations.  He thought he was in a video game, and the nurses and I were shooting at him.  Looking back, we can laugh at that now.  I also told him he needed to take a brake from the Playstation.

Dave's oncologist mentioned that they are getting ready to do trials combining IL-2 /Yervoy and IL-2/Zelboraf.   

Geez, I forgot about Dave's hallucinations.  He thought he was in a video game, and the nurses and I were shooting at him.  Looking back, we can laugh at that now.  I also told him he needed to take a brake from the Playstation.

Dave's oncologist mentioned that they are getting ready to do trials combining IL-2 /Yervoy and IL-2/Zelboraf.   

Geez, I forgot about Dave's hallucinations.  He thought he was in a video game, and the nurses and I were shooting at him.  Looking back, we can laugh at that now.  I also told him he needed to take a brake from the Playstation.

Dave's oncologist mentioned that they are getting ready to do trials combining IL-2 /Yervoy and IL-2/Zelboraf.   

Poor Charlie, sounds like you had a worse time than I did.  The only hullucination I had in my 6 weeks of il-2 was after the first or second week when i got home.  That gal says she was not running around my house in only her panties!  Either way the memory is great!

    Some places like UVA have a ward with specially trained nurses for handling the IL-2 administration rather than using the ICU.. One advantage is that while some ICU's do  not allow overnight guests, UVA even has a nice place for your guest to sleep and they even provide pillows and blankets for them.

    My O2 stayed up ok, but my blood pressure sure tanked.  At below 90 is where they hold off bags until it comes back up.  (Licorace or licorace tea will help hold up the blood pressure.)

     I never did figure out if I lost my appetite or if it was just that after 2-3 days of IL-2 all food tasted like cardboard.  I never did develop a taste for cardboard.

    I took my laptop and managd to chat and post almost very day while I was in the treatments.  Loved that hospital high speed wi-fi.

    The two additional tests they did on me was to run an MRI to see if they could find anything in my head.(No comments?)

and the kidney test (blood test for creatinine).  The creatinine is run repeatedly to check for kidney function as well as their keeping tract of the urine output..

    I loved the quick turnaround in learning if the IL-2 was working as well as the returning to near normal the 5th day after release from the weeks treatment. (Except for the itch and thin skin.)

I considered it very doable and would be willing to do more again.  (Not FUn but doable!)

Good luck to all going this route.  i have read of trials whre they are trying diferent things with IL-2 that seem to be improviing the success rate over that of IL-2 alone.  Just get a pro that knows what he is doing for the administration of the IL-2 and knows how to watch for and treat the side-effects rapidily when they first occur.

Poor Charlie, sounds like you had a worse time than I did.  The only hullucination I had in my 6 weeks of il-2 was after the first or second week when i got home.  That gal says she was not running around my house in only her panties!  Either way the memory is great!

    Some places like UVA have a ward with specially trained nurses for handling the IL-2 administration rather than using the ICU.. One advantage is that while some ICU's do  not allow overnight guests, UVA even has a nice place for your guest to sleep and they even provide pillows and blankets for them.

    My O2 stayed up ok, but my blood pressure sure tanked.  At below 90 is where they hold off bags until it comes back up.  (Licorace or licorace tea will help hold up the blood pressure.)

     I never did figure out if I lost my appetite or if it was just that after 2-3 days of IL-2 all food tasted like cardboard.  I never did develop a taste for cardboard.

    I took my laptop and managd to chat and post almost very day while I was in the treatments.  Loved that hospital high speed wi-fi.

    The two additional tests they did on me was to run an MRI to see if they could find anything in my head.(No comments?)

and the kidney test (blood test for creatinine).  The creatinine is run repeatedly to check for kidney function as well as their keeping tract of the urine output..

    I loved the quick turnaround in learning if the IL-2 was working as well as the returning to near normal the 5th day after release from the weeks treatment. (Except for the itch and thin skin.)

I considered it very doable and would be willing to do more again.  (Not FUn but doable!)

Good luck to all going this route.  i have read of trials whre they are trying diferent things with IL-2 that seem to be improviing the success rate over that of IL-2 alone.  Just get a pro that knows what he is doing for the administration of the IL-2 and knows how to watch for and treat the side-effects rapidily when they first occur.

Here is a rundown of the nuts of bolts of hi dose IL-2.

First you have to be deemed medically able to receive hi dose IL2..  

Pre-screening qualifications are:

1) Cardiac Stress test

2)Pulmonary lung function test

3)Blood gas test

4)Chest x-ray

Treatments typically begin on a Monday and are most often (as they should be) administered in an ICU unit.

First, interventional radiology will insert a catheter of some sort.  Mine was in my neck and had three lumens (ports) one to receive the drug, one for pulling blood and one spare.

Blood is drawn and you are hooked up to several monitors.  Then you wait and chill.  The nurses want to get a solid base line read on their monitors and your blood work pre-infusion.  Your pulse, respiration, bp, o2 will be constantly monitored and is your urine output.

Probably mid to late afternoon, the nurses will check you over again and then order up the IL2.  IL2 is around 8k a bag , has to be compounded in the lab and has a very short shelf life, so it's about an hour or so before it arrives to your iv pole, while you wait, a saline or some type of fluid drip will probably be started.

From this point, ALL of your urine output will be measured, so drink up.

The administration ideally is one bag every 8 hours if your body permits.  This will vary.

At first, the biggest sensation will be the onset of rigors which is fever and chills.  The chills will probably be dramatic and sudden.  While wretching with chills, nausea is not uncommon.  The nurses will counter act the chills with demorol, which is soooooooooooooo warm and soothing, maybe some compazine to cope with the nausea.

Body temp will be ginto spike and gradually, and increasingly the skin will begin to turn a cherry red and due to Capillary Leak Syndrome, the body will begin to swell with fluid buildup.  Slowly, as the infusions continue, the body will begin to reek  of a chemical odor, as the eyes tear, the fluid burns and itches.  Not to be gross, but your urine will smell dreadfull and turn increasing dark.  The rectum may begin to "weep" with the fluid causing burning and itching.  The lips begin to dry and crack at the edges as a skin crawling itch slowly builds.  The body sweats and that sweat feels land smells ike your body is becoming a toxic waste dump.

Blood pressure will drop, oxygen levels will tank, urine output slows or stops.  Appetite disappears.  The ability to focus and concentrate diminishes.

All this will compound and increase as the infusions continue.

If your urine output stops or slows too much, so will the infusions until you stabilize.

At maximum toxcisity, the brain loses touch with reality and one wil begin to hallucinate.  That is usually, if not before, the stopping point.

At cessation, fluids are pushed until your vitals stabilize and come to your senses.

Moving out of ICU, they will try to get you to eat, take fluids and make certain your vitals are stable………..usually a day or two before release.

You will be given lasik to sluff of the fluid buildup…………a water gain of 20 or more pounds is not unusual.  The skin will continually itch and peel in a dramatic way.  After all this, you go home and………….

Rest for a week, during which time most things other than the skin itch and peel will go away.

Then you do it again.  Chances are good the side effects will be more dramatic.

Then you go home and wait two weeks then scan.

So, in six weeks you know your response level.

Then, in the spirit of a good party…………….you can do that same cycle all over again !

My doc and the ICU nurses still laugh about when I was "confused" as they like to call it when I was dancing naked on my bed , smoking a cigarette with a o2 canula in my nose.

So, that's some of what I remember and I've highlighted only the easy parts.

But it IS doable.

That's my story and I'm sticking to it.

oh,,,,,,,,,,,,,,,,,,,,,,,BIG P.S.  the number of bags is irrelevant

Cheers,

Charlie S

Here is a rundown of the nuts of bolts of hi dose IL-2.

First you have to be deemed medically able to receive hi dose IL2..  

Pre-screening qualifications are:

1) Cardiac Stress test

2)Pulmonary lung function test

3)Blood gas test

4)Chest x-ray

Treatments typically begin on a Monday and are most often (as they should be) administered in an ICU unit.

First, interventional radiology will insert a catheter of some sort.  Mine was in my neck and had three lumens (ports) one to receive the drug, one for pulling blood and one spare.

Blood is drawn and you are hooked up to several monitors.  Then you wait and chill.  The nurses want to get a solid base line read on their monitors and your blood work pre-infusion.  Your pulse, respiration, bp, o2 will be constantly monitored and is your urine output.

Probably mid to late afternoon, the nurses will check you over again and then order up the IL2.  IL2 is around 8k a bag , has to be compounded in the lab and has a very short shelf life, so it's about an hour or so before it arrives to your iv pole, while you wait, a saline or some type of fluid drip will probably be started.

From this point, ALL of your urine output will be measured, so drink up.

The administration ideally is one bag every 8 hours if your body permits.  This will vary.

At first, the biggest sensation will be the onset of rigors which is fever and chills.  The chills will probably be dramatic and sudden.  While wretching with chills, nausea is not uncommon.  The nurses will counter act the chills with demorol, which is soooooooooooooo warm and soothing, maybe some compazine to cope with the nausea.

Body temp will be ginto spike and gradually, and increasingly the skin will begin to turn a cherry red and due to Capillary Leak Syndrome, the body will begin to swell with fluid buildup.  Slowly, as the infusions continue, the body will begin to reek  of a chemical odor, as the eyes tear, the fluid burns and itches.  Not to be gross, but your urine will smell dreadfull and turn increasing dark.  The rectum may begin to "weep" with the fluid causing burning and itching.  The lips begin to dry and crack at the edges as a skin crawling itch slowly builds.  The body sweats and that sweat feels land smells ike your body is becoming a toxic waste dump.

Blood pressure will drop, oxygen levels will tank, urine output slows or stops.  Appetite disappears.  The ability to focus and concentrate diminishes.

All this will compound and increase as the infusions continue.

If your urine output stops or slows too much, so will the infusions until you stabilize.

At maximum toxcisity, the brain loses touch with reality and one wil begin to hallucinate.  That is usually, if not before, the stopping point.

At cessation, fluids are pushed until your vitals stabilize and come to your senses.

Moving out of ICU, they will try to get you to eat, take fluids and make certain your vitals are stable………..usually a day or two before release.

You will be given lasik to sluff of the fluid buildup…………a water gain of 20 or more pounds is not unusual.  The skin will continually itch and peel in a dramatic way.  After all this, you go home and………….

Rest for a week, during which time most things other than the skin itch and peel will go away.

Then you do it again.  Chances are good the side effects will be more dramatic.

Then you go home and wait two weeks then scan.

So, in six weeks you know your response level.

Then, in the spirit of a good party…………….you can do that same cycle all over again !

My doc and the ICU nurses still laugh about when I was "confused" as they like to call it when I was dancing naked on my bed , smoking a cigarette with a o2 canula in my nose.

So, that's some of what I remember and I've highlighted only the easy parts.

But it IS doable.

That's my story and I'm sticking to it.

oh,,,,,,,,,,,,,,,,,,,,,,,BIG P.S.  the number of bags is irrelevant

Cheers,

Charlie S