› Forums › General Melanoma Community › IL-2 question
- This topic has 21 replies, 5 voices, and was last updated 9 years, 10 months ago by
_Paul_.
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- January 19, 2016 at 4:48 pm
Can anyone tell me if during your IL-2 treatment while receiving infusions the week in the hospital, if you needed someone there with you? My husband will be starting a new trial and while in the 5 days I wont be able to be with him. I worry that he will feel too sick at times to be able to either ask the staff for things he needs, or to get them himself….like a snack or something.
He doesnt want me there as he says he will be well taken care of and feels more at peace when I am home with our children. The hospital is 3 hours away and he doesnt really want either of parents there either. They are not a good support system for him. Instread of focusing on his needs, etc. they are torn and apart and so distraught (they are both in their late 70's) over this they upset him more.
Anyway, I would just like to know how feasible it is for him to do this without me? I dont want to be worried sick if I am not there, even though I can be there if need be at any moment.
thanks.
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- January 19, 2016 at 5:03 pm
My husband had IL-2 two years ago. The first few bags are no problem but as he took more bags the sicker he got. I'll be honest my husband was very strong and healthy but the IL-2 can really make a person sick. He vomited what seemed like stomach bile and also had diarrhea, being there to help him was important. I think if you can't be there the nurses should help him as much as possible. I pray he does well. What kind of trial is it? and where?
Emily
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- January 19, 2016 at 5:03 pm
My husband had IL-2 two years ago. The first few bags are no problem but as he took more bags the sicker he got. I'll be honest my husband was very strong and healthy but the IL-2 can really make a person sick. He vomited what seemed like stomach bile and also had diarrhea, being there to help him was important. I think if you can't be there the nurses should help him as much as possible. I pray he does well. What kind of trial is it? and where?
Emily
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- January 19, 2016 at 7:03 pm
Thanks for your response Emily. The trial is at Hillman Cancer Center in Pittsburgh, PA. It is trial with a combinatin of the high dose IL2 and Aflibercept. My husband has progressed on an Ippi combo trial and now a Keytruda/combo trial. He has had 2 major small intestine resesctions in the last 2 years, and has lymph node involvement in many areas that are giving him major issues as they are growing rapidly. Has mass on kidney and another in intestine. The worst in the nodes in his neck and tonsil….they are huge and causing quite a bit of pain.The one in bowel is also hurting. This trial as difficult as it is might be the only time he can try it before he becomes healthy enough not to. It seems the ipi and keytruda both showed some response in the beginning but after about 8-10 months things progressed.
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- January 19, 2016 at 7:03 pm
Thanks for your response Emily. The trial is at Hillman Cancer Center in Pittsburgh, PA. It is trial with a combinatin of the high dose IL2 and Aflibercept. My husband has progressed on an Ippi combo trial and now a Keytruda/combo trial. He has had 2 major small intestine resesctions in the last 2 years, and has lymph node involvement in many areas that are giving him major issues as they are growing rapidly. Has mass on kidney and another in intestine. The worst in the nodes in his neck and tonsil….they are huge and causing quite a bit of pain.The one in bowel is also hurting. This trial as difficult as it is might be the only time he can try it before he becomes healthy enough not to. It seems the ipi and keytruda both showed some response in the beginning but after about 8-10 months things progressed.
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- January 19, 2016 at 7:03 pm
Thanks for your response Emily. The trial is at Hillman Cancer Center in Pittsburgh, PA. It is trial with a combinatin of the high dose IL2 and Aflibercept. My husband has progressed on an Ippi combo trial and now a Keytruda/combo trial. He has had 2 major small intestine resesctions in the last 2 years, and has lymph node involvement in many areas that are giving him major issues as they are growing rapidly. Has mass on kidney and another in intestine. The worst in the nodes in his neck and tonsil….they are huge and causing quite a bit of pain.The one in bowel is also hurting. This trial as difficult as it is might be the only time he can try it before he becomes healthy enough not to. It seems the ipi and keytruda both showed some response in the beginning but after about 8-10 months things progressed.
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- January 19, 2016 at 5:03 pm
My husband had IL-2 two years ago. The first few bags are no problem but as he took more bags the sicker he got. I'll be honest my husband was very strong and healthy but the IL-2 can really make a person sick. He vomited what seemed like stomach bile and also had diarrhea, being there to help him was important. I think if you can't be there the nurses should help him as much as possible. I pray he does well. What kind of trial is it? and where?
Emily
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- January 19, 2016 at 9:23 pm
I did 4 cycles on my own. As I was flying 400 miles each time for treatment, someone accompanied me home the first two times. After I had 'proven' myself they didn't object to me discharging on my own the last 2 cycles.
Each 5-day cycle is like a long journey, for sure. I wouldn't have minded someone to bring me some takeout food once in awhile but I was pretty out of it most of the time. As I never had anyone there I can't really compare to what ir would be like if someone had been with me. I was also in decent shape at the time which might affect my perspective.
For sure I would not have wanted someone there who could not be emotionally supportive or who otherwise I would not have good chemistry.
Good luck to him in his treatment.
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- January 19, 2016 at 9:23 pm
I did 4 cycles on my own. As I was flying 400 miles each time for treatment, someone accompanied me home the first two times. After I had 'proven' myself they didn't object to me discharging on my own the last 2 cycles.
Each 5-day cycle is like a long journey, for sure. I wouldn't have minded someone to bring me some takeout food once in awhile but I was pretty out of it most of the time. As I never had anyone there I can't really compare to what ir would be like if someone had been with me. I was also in decent shape at the time which might affect my perspective.
For sure I would not have wanted someone there who could not be emotionally supportive or who otherwise I would not have good chemistry.
Good luck to him in his treatment.
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- January 19, 2016 at 9:23 pm
I did 4 cycles on my own. As I was flying 400 miles each time for treatment, someone accompanied me home the first two times. After I had 'proven' myself they didn't object to me discharging on my own the last 2 cycles.
Each 5-day cycle is like a long journey, for sure. I wouldn't have minded someone to bring me some takeout food once in awhile but I was pretty out of it most of the time. As I never had anyone there I can't really compare to what ir would be like if someone had been with me. I was also in decent shape at the time which might affect my perspective.
For sure I would not have wanted someone there who could not be emotionally supportive or who otherwise I would not have good chemistry.
Good luck to him in his treatment.
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- January 20, 2016 at 12:28 am
I had IL-2 in 2014. The nurses are specially trained for administering the drug and they are very attentive. I was happy that my husband stayed but I know it was much worse for him than for me going through it. I had rigors and the intestinal issues (explosive diarrhea). The side effects go away within a few days of stopping. They also monitor you very closely to determine if they give the next dose of the drug (they often skip one here and there). I did not have an appetite after the first day or two. I was alone for a day or two at the end of one week and the nurses took excellent care of me.
Sending positive thoughts that it works!
betsy
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- January 20, 2016 at 12:28 am
I had IL-2 in 2014. The nurses are specially trained for administering the drug and they are very attentive. I was happy that my husband stayed but I know it was much worse for him than for me going through it. I had rigors and the intestinal issues (explosive diarrhea). The side effects go away within a few days of stopping. They also monitor you very closely to determine if they give the next dose of the drug (they often skip one here and there). I did not have an appetite after the first day or two. I was alone for a day or two at the end of one week and the nurses took excellent care of me.
Sending positive thoughts that it works!
betsy
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- January 21, 2016 at 8:05 pm
He is having MRI and stress test and some others this week. Will be starting IL2 & Aflibercept combo in trial week after next. Please pray this an help shiring some tumors causing him pain. The progession is happening so fast right now. CT scan in two weeks showed progression like crazy and the worst of it is a tumor on his kidney that is pushing on a nerve. Among others, he has two on front and back of esophagus and airway tube that is compressing….
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- January 21, 2016 at 8:05 pm
He is having MRI and stress test and some others this week. Will be starting IL2 & Aflibercept combo in trial week after next. Please pray this an help shiring some tumors causing him pain. The progession is happening so fast right now. CT scan in two weeks showed progression like crazy and the worst of it is a tumor on his kidney that is pushing on a nerve. Among others, he has two on front and back of esophagus and airway tube that is compressing….
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- January 21, 2016 at 8:05 pm
He is having MRI and stress test and some others this week. Will be starting IL2 & Aflibercept combo in trial week after next. Please pray this an help shiring some tumors causing him pain. The progession is happening so fast right now. CT scan in two weeks showed progression like crazy and the worst of it is a tumor on his kidney that is pushing on a nerve. Among others, he has two on front and back of esophagus and airway tube that is compressing….
-
- January 20, 2016 at 12:28 am
I had IL-2 in 2014. The nurses are specially trained for administering the drug and they are very attentive. I was happy that my husband stayed but I know it was much worse for him than for me going through it. I had rigors and the intestinal issues (explosive diarrhea). The side effects go away within a few days of stopping. They also monitor you very closely to determine if they give the next dose of the drug (they often skip one here and there). I did not have an appetite after the first day or two. I was alone for a day or two at the end of one week and the nurses took excellent care of me.
Sending positive thoughts that it works!
betsy
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