› Forums › General Melanoma Community › Having IL-2.
- This topic has 22 replies, 7 voices, and was last updated 12 years, 7 months ago by
carol b.
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- September 7, 2011 at 9:45 pm
Hi everyone,
came to Yale yesterday. they do 2 bags a day. had 1st last nite, second this a.m, 3rd in about 20 min.
everyone is great here. It' defintely NOT NEW YORK. (although there are some advantages to NY, epecially if you eat a kosher diet. LOL.) losing appetite anyway, always PB & bananas.
Hi everyone,
came to Yale yesterday. they do 2 bags a day. had 1st last nite, second this a.m, 3rd in about 20 min.
everyone is great here. It' defintely NOT NEW YORK. (although there are some advantages to NY, epecially if you eat a kosher diet. LOL.) losing appetite anyway, always PB & bananas.
no side efffects to speak of till this afternoon. Red rash on chest without itching, lower urine output (but I amazed them at how much I was putting out–lots of water, low fever & flu-like symptoms. Was shocked that I havenn't gotten the tremors, but we'll see what tonite brings.
I know I'll feel progressively worse, MIGHT post in coming days, will definately do so after return Sun. or Mon.
You guys are great.
take care,
karen
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- September 8, 2011 at 12:00 am
Young lady, Watch out about feeling too great. When I went in for my second week of IL-2 and told the nurses I felt great, I was told not to worry about it, that they would take care of that feeling! (They did!) On the first bag (first week), I only felt a mild coolness in my chest that my heating pad took care of. Be ready for the later ones, just don't wait too long after feeling coldness start in the feet or chest. The shaking is harder to stop if it gets a good start. (BEEN THERE.)
Do they attempt a bag every 12 hours? What is the max number of bags they will attempt during the week? Pulling for you, (I missed posting in later weeks after a few days.
You will make it!
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- September 8, 2011 at 12:00 am
Young lady, Watch out about feeling too great. When I went in for my second week of IL-2 and told the nurses I felt great, I was told not to worry about it, that they would take care of that feeling! (They did!) On the first bag (first week), I only felt a mild coolness in my chest that my heating pad took care of. Be ready for the later ones, just don't wait too long after feeling coldness start in the feet or chest. The shaking is harder to stop if it gets a good start. (BEEN THERE.)
Do they attempt a bag every 12 hours? What is the max number of bags they will attempt during the week? Pulling for you, (I missed posting in later weeks after a few days.
You will make it!
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- September 8, 2011 at 12:24 pm
Karen,
I looked back at your therapy this is what I found.
You had radiation
!st Ipi 5-26-11
2nd Ipi 6-16-11
3rd ipi 7-7-11
4th ipi 7-25-11
44 days of washout period
1st IL-2 9-07-11
Is this correct?
Based on my theory, the 4th infusion of Ipi would be the considered the time 0. With that considered, the addition of IL-2 was at day 44, (9-07-11) . So at time 90-100 days you should see shrinkage of and tumors. If you get a scan at the last week of October, you hopefully see shrinkage.
Warm regards
Jimmy B
P.S. I too am orginally from Babylon, Long, Island NY
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- September 8, 2011 at 1:28 pm
The immune response in the body can be measured by taking blood samples.
Research shows that it takes up to 4 months for an immune response to take place. If the Treatment works, the rate of growth of the melanoma will then begin to slow down. Then it may become stable (not growing any more) for a while. Eventually, the melanoma may start to shrink.
I wish you all the best.
Jimmy B.
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- September 8, 2011 at 7:59 pm
Thanks, everyone.
Yes, I know the side effects will get worse, if not this week then in 2 weeks when i come back. I've been warned and i expect to be worse either later this week or next time. They've had to give me something to bring up my BP,and despite all the bananas, had to get potassium. I did b ring a case of water, and they're very impressed by my urine output. Have had the rash, red face, weigh gain–today I got the itch & they're letting me take Doxipin for it, they don't usually use it but it's not contra and it worked for the ipi rash.i think it's woking for this one too.
They only give 2 infusions/day here, 720 mg. bag, for total goal of 8 bags.
I told the doc that I have the ipi mindset–that if i'm not getting the worst side effecs, it's not working. He said that's absolutely, positively untrue.
another update soon.
take care gang.
karen
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- September 8, 2011 at 8:27 pm
I'm so glad you posted about the relation of side effects to response. Although Dave got red all over his body (like a sunburn), he didn't get the bad peeling of the skin that I've heard of, although his ears did peel a little and he itches. I was nervous thinking that like with IPI, maybe he wasn't getting a response.
I hope the week flys by for you –
Maria
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- September 8, 2011 at 8:27 pm
I'm so glad you posted about the relation of side effects to response. Although Dave got red all over his body (like a sunburn), he didn't get the bad peeling of the skin that I've heard of, although his ears did peel a little and he itches. I was nervous thinking that like with IPI, maybe he wasn't getting a response.
I hope the week flys by for you –
Maria
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- September 8, 2011 at 8:37 pm
Interesting aab out the different protocal. When I get back home I will talk with Dr Weiss about what results it has shown compared with the "standard protocol" I would eexpect there would be less effects on the kidneys and the blood pressure and possibly a little less water gain. I was aware of most if not all of the side effects, but did not expect to get them all. DON'T ASK for extra problems! I had less problems than many, but had enough! I do believe that if not for the IL-2 I would not be here today. (
Am busy today with new Grandson coming home from hospital and working on bicycles with other Grandsons.) -
- September 8, 2011 at 8:37 pm
Interesting aab out the different protocal. When I get back home I will talk with Dr Weiss about what results it has shown compared with the "standard protocol" I would eexpect there would be less effects on the kidneys and the blood pressure and possibly a little less water gain. I was aware of most if not all of the side effects, but did not expect to get them all. DON'T ASK for extra problems! I had less problems than many, but had enough! I do believe that if not for the IL-2 I would not be here today. (
Am busy today with new Grandson coming home from hospital and working on bicycles with other Grandsons.) -
- September 8, 2011 at 7:59 pm
Thanks, everyone.
Yes, I know the side effects will get worse, if not this week then in 2 weeks when i come back. I've been warned and i expect to be worse either later this week or next time. They've had to give me something to bring up my BP,and despite all the bananas, had to get potassium. I did b ring a case of water, and they're very impressed by my urine output. Have had the rash, red face, weigh gain–today I got the itch & they're letting me take Doxipin for it, they don't usually use it but it's not contra and it worked for the ipi rash.i think it's woking for this one too.
They only give 2 infusions/day here, 720 mg. bag, for total goal of 8 bags.
I told the doc that I have the ipi mindset–that if i'm not getting the worst side effecs, it's not working. He said that's absolutely, positively untrue.
another update soon.
take care gang.
karen
-
- September 8, 2011 at 1:28 pm
The immune response in the body can be measured by taking blood samples.
Research shows that it takes up to 4 months for an immune response to take place. If the Treatment works, the rate of growth of the melanoma will then begin to slow down. Then it may become stable (not growing any more) for a while. Eventually, the melanoma may start to shrink.
I wish you all the best.
Jimmy B.
-
- September 8, 2011 at 12:24 pm
Karen,
I looked back at your therapy this is what I found.
You had radiation
!st Ipi 5-26-11
2nd Ipi 6-16-11
3rd ipi 7-7-11
4th ipi 7-25-11
44 days of washout period
1st IL-2 9-07-11
Is this correct?
Based on my theory, the 4th infusion of Ipi would be the considered the time 0. With that considered, the addition of IL-2 was at day 44, (9-07-11) . So at time 90-100 days you should see shrinkage of and tumors. If you get a scan at the last week of October, you hopefully see shrinkage.
Warm regards
Jimmy B
P.S. I too am orginally from Babylon, Long, Island NY
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- September 14, 2011 at 1:32 am
Ive just now read your post.. i pray the IL2 works for you. I know i would not be here todat without it. I was a wonderful responder. I had every side effect imaginable. The worse was the itching and peeling. It last the longest for me. I havent read anything about you having halousinations. If you do notify them immediatly. Expect the low heart rate, i guess everyone gets that,, mine droped to 40/20 and had to be sent to ccu for 3 days. Im glad to hear your drinking your water. The more the better, DONT get dehydrated. It makes all the side effects worse. Never be afraid to ask the nurses for anything. If you feel some wierd thing coming on le them know to take care of it faster. If you start peelling its usually after u get home. i got a new face lift..lol.. Also i lost about half of my hair, no clumps but it got really thin. If that happens just baby your hair, keep as much as u can and like me it will start growing back, it took about 3 months for me to notice it. But this aint your first boat ride with a treatment so im sure you know what to do mostly. I got a bag every eight hours, the goal was 24 but i could only do 14. I did 3 rounds of it. They decided surgery to get out the huge stubborn one under my arm. Now starting Monday i start radiation for 3 weeks but im getting the high dose so i only have to go Mon and Fri for 3 weeks. i get my Pet in Nov. We are praying IL2 has worked its miracle on me as it has in the past and i would love to be NED this time.. I pray its your miracle too… i will be checking on you to see how you r doing but understand if its after you get back home.. Take care and may God hold you close to his heart.
Carol b
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- September 14, 2011 at 1:32 am
Ive just now read your post.. i pray the IL2 works for you. I know i would not be here todat without it. I was a wonderful responder. I had every side effect imaginable. The worse was the itching and peeling. It last the longest for me. I havent read anything about you having halousinations. If you do notify them immediatly. Expect the low heart rate, i guess everyone gets that,, mine droped to 40/20 and had to be sent to ccu for 3 days. Im glad to hear your drinking your water. The more the better, DONT get dehydrated. It makes all the side effects worse. Never be afraid to ask the nurses for anything. If you feel some wierd thing coming on le them know to take care of it faster. If you start peelling its usually after u get home. i got a new face lift..lol.. Also i lost about half of my hair, no clumps but it got really thin. If that happens just baby your hair, keep as much as u can and like me it will start growing back, it took about 3 months for me to notice it. But this aint your first boat ride with a treatment so im sure you know what to do mostly. I got a bag every eight hours, the goal was 24 but i could only do 14. I did 3 rounds of it. They decided surgery to get out the huge stubborn one under my arm. Now starting Monday i start radiation for 3 weeks but im getting the high dose so i only have to go Mon and Fri for 3 weeks. i get my Pet in Nov. We are praying IL2 has worked its miracle on me as it has in the past and i would love to be NED this time.. I pray its your miracle too… i will be checking on you to see how you r doing but understand if its after you get back home.. Take care and may God hold you close to his heart.
Carol b
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