› Forums › General Melanoma Community › First week of IL-2 done
- This topic has 12 replies, 6 voices, and was last updated 12 years, 7 months ago by
MariaH.
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- September 3, 2011 at 1:04 pm
Dave finished his first round of IL-2, taking his last dose at 2:00 pm on Thursday. If obtaining an immune response was the goal, he did it. Blood pressure dropped to 70/35, heart rate tached – 160, and a 104.2 fever on tylenol, respiration down to 89 and put on oxygen. It was the most brutal thing I have ever seen my husband (or any human being, for that matter) go through. However, by 6:00 am he was sitting up in bed, and by 9:00 taking a shower. We left the hospital at 2:00 pm on Friday, and other than feeling tired, the itch, and a slight headache he's
Dave finished his first round of IL-2, taking his last dose at 2:00 pm on Thursday. If obtaining an immune response was the goal, he did it. Blood pressure dropped to 70/35, heart rate tached – 160, and a 104.2 fever on tylenol, respiration down to 89 and put on oxygen. It was the most brutal thing I have ever seen my husband (or any human being, for that matter) go through. However, by 6:00 am he was sitting up in bed, and by 9:00 taking a shower. We left the hospital at 2:00 pm on Friday, and other than feeling tired, the itch, and a slight headache he's feeling OK.
He was only able to do 6 bags, since the side effects wouldn't hit for 2 hours after the infusion and lasted right through the next scheduled dose. That being said, we met a woman there who was only able to do 6 bags each week for her first round as well, and it worked on of her lungs mets (which Dave has) – and she was in for her second round.
I can't thank the people on this board enough for all the info regarding IL-2. Nothing was a shock to us, and Jane's list brought up every issue he had.
Hopefully his response means it's working – he'll be heading in for his second week on the 12th, and I already know the waiting for scans will be brutal. I pray this is working –
Best wishes to all the mel warriors out there,
Maria
- Replies
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- September 3, 2011 at 3:10 pm
I and say that I agree totally. That stuff is super nasty. I’m not sure where you guys are doing this but it’s horrible stuff anywhere. At NIH I did twelve at first but over four sessions in time I could do just six in the end. Worst stuff ever made by man if you ask me. However while there I was some thirty people over time do the same and some guys for not fazed by it a bit. Crazy. Wish you all the luck in your journey. Warren G -
- September 3, 2011 at 3:10 pm
I and say that I agree totally. That stuff is super nasty. I’m not sure where you guys are doing this but it’s horrible stuff anywhere. At NIH I did twelve at first but over four sessions in time I could do just six in the end. Worst stuff ever made by man if you ask me. However while there I was some thirty people over time do the same and some guys for not fazed by it a bit. Crazy. Wish you all the luck in your journey. Warren G -
- September 3, 2011 at 3:42 pm
You and Dave both hang in there. It is really a tough treatment. The Ativan kept me non chalant about treatment first week in the hospital and I made it through 12 bags.
Subsequent weeks the Ativan was useless. I won't talk about my *issues* brought on from treatment because everyone is different and in the end you muddle through it.Fast forward. Tuesday will be my 2nd scan since completing 2 rounds of IL2. All scans (after round 1 and round 2) showed significant improvement. Dr. feels he just may be able to tell me I am in complete remission so I am very hopeful! I get the results on Friday.
A key to whether is was working for me was the LDH levels in the hospital. I began at 3800. Within the first week I had dropped to the 800's. Last bloodwork showed me at 161. I had numerous liver mets though, so this may? only be used if it's the liver? I really don't know that answer. (just an fyi…I had mets in my lungs and lymph nodes also) My whole point for posting is to give you HOPE! The nicest part about this brutal treatment is you know quickly if it is working or not and can go from there. First scan may seem like forever away, but it really isn't. I had to be wheelchaired into treatment the 1st week and after the 2nd week in the hospital I walked out. (2 lesions around the spine)
My thoughts and prayers are with you both.
Karin
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- September 3, 2011 at 3:42 pm
You and Dave both hang in there. It is really a tough treatment. The Ativan kept me non chalant about treatment first week in the hospital and I made it through 12 bags.
Subsequent weeks the Ativan was useless. I won't talk about my *issues* brought on from treatment because everyone is different and in the end you muddle through it.Fast forward. Tuesday will be my 2nd scan since completing 2 rounds of IL2. All scans (after round 1 and round 2) showed significant improvement. Dr. feels he just may be able to tell me I am in complete remission so I am very hopeful! I get the results on Friday.
A key to whether is was working for me was the LDH levels in the hospital. I began at 3800. Within the first week I had dropped to the 800's. Last bloodwork showed me at 161. I had numerous liver mets though, so this may? only be used if it's the liver? I really don't know that answer. (just an fyi…I had mets in my lungs and lymph nodes also) My whole point for posting is to give you HOPE! The nicest part about this brutal treatment is you know quickly if it is working or not and can go from there. First scan may seem like forever away, but it really isn't. I had to be wheelchaired into treatment the 1st week and after the 2nd week in the hospital I walked out. (2 lesions around the spine)
My thoughts and prayers are with you both.
Karin
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- September 4, 2011 at 2:58 am
I liked the fairly fast knowledge as to the response and the short time to recover. Sure helps when one has the Onc and staff that knows what they are doing. Very glad that the brutality is such a short time. I still thiink it is worth tryiig on more people and wish more Onc's knew how to handle this treatment, rather than being too scared to try it. (Some Onc's scare people away from it.) I had that low a blood pressure drop once to. I was told that often 7 bags is an average for the week. I had a high of 12 and a low of 4. Number of bags is not the main thing. Way to go, Man. (Food will tast better in a couple of days!)
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- September 4, 2011 at 4:00 pm
Hi Maria,
I'm so glad Dave bounced back so quickly. Your post was very comforting to me–I'm starting on Tuesday. (monday, all the pick-line staff is off for labor day)
Dave's so lucky to have you as his support. My husband's wonderful but he's useless on the computer!
Be well,
karen
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- September 4, 2011 at 4:00 pm
Hi Maria,
I'm so glad Dave bounced back so quickly. Your post was very comforting to me–I'm starting on Tuesday. (monday, all the pick-line staff is off for labor day)
Dave's so lucky to have you as his support. My husband's wonderful but he's useless on the computer!
Be well,
karen
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- September 4, 2011 at 2:58 am
I liked the fairly fast knowledge as to the response and the short time to recover. Sure helps when one has the Onc and staff that knows what they are doing. Very glad that the brutality is such a short time. I still thiink it is worth tryiig on more people and wish more Onc's knew how to handle this treatment, rather than being too scared to try it. (Some Onc's scare people away from it.) I had that low a blood pressure drop once to. I was told that often 7 bags is an average for the week. I had a high of 12 and a low of 4. Number of bags is not the main thing. Way to go, Man. (Food will tast better in a couple of days!)
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- September 14, 2011 at 2:11 am
hi Mariah and Dave
im Rick and my wife Carol has stage 4 melanoma, I have been with her threw it all. i want to give yas a few pointers if i may. first of all try to make Dave drink as much water threw the IL2 treatments (Just as much as you can force him too) it helps with dehydration. 2nd: try to take notes of every time the nurse comes in to take his vitals. 3rd: write down every time they bring him his pain meds. we were at Vanderbuilt in nashville and thats an awsome hospital but the night nurses didnt give my wife all hers. she said she did but my notes told different.
also take notes of what Dave says while on IL2. and things he sees. because it can make him hulucinate. my wife saw things move that really didnt. and the week she came home from round 1 she saw a bunch of ferrys coming out of the laptop and twirled around to make a pretty butterfly lol. and every room in the house was so pretty and pink too lol
there were a few incidences like this that happened but it didnt last long.
i wish yas the best going threw this. just keep a positive attitude, pray alot, get everyone else to pray also. i believe prayer helped my wife. shes back to around 90% recovered thank God.
she had a big tummer removed from under her arm about 5 weeks ago and has some PT, my wifes a fighter and thats for sure. she broke her back in 2000 and the drs said she wouldnt ever walk again. 3 months later she was back to work. in 2008 she got breast cancer. she went for 45 treatments of radiation and came to work with me after every treatment. we do elect and plumbing and she was the best. in nov. we went to pennsylvania to see her youngest daughter have her baby, thats when she noticed a lump under her arm. it went from a small lump to a huge tummer and then spread into her lymphnodes. went from nothing to stage 4 in 3 months. the drs gave her 4 and a half months to 9 months to live. its been over 9 months now and shes on her way to recovery.
just hang in there Maria, and tell your husband he can beat this, with God any thing is possible. Faith can move a mountain
God bless yas both
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- September 18, 2011 at 2:48 am
Thank you so much for replying Rick. Dave finished his first course this past Friday (last infusion was actually on Thursday) and I wish I had caught your reply before then. Thursday's infusion was the first one with hallucinations – he thought we were all shooting at him. Since he is an avid hunter, I guess I could see where he may get that from. I also agree with documenting the meds – several times I had to ask for pain meds for Dave when they had claimed he already received them. After checking their records, as I asked, they found they hadn't – not at the fault of the nurses, but Dave knew that he need Tylenol 5 hours after his infusion, not during it. And after the fevers started, the morphine helped – but not during the rigors – he did demoral for that.
He was able to do 11 bags over the two weeks. Now we wait for scans to see if his immune system is responding. I pray – ALOT- that it's doing it's job.
On a side note, my husband also does plumbing and excavation – he worked during his radiation (prior to IL-2) as well. You just can't keep a fighting man down.
Best wishes to you and wife,
Maria
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- September 18, 2011 at 2:48 am
Thank you so much for replying Rick. Dave finished his first course this past Friday (last infusion was actually on Thursday) and I wish I had caught your reply before then. Thursday's infusion was the first one with hallucinations – he thought we were all shooting at him. Since he is an avid hunter, I guess I could see where he may get that from. I also agree with documenting the meds – several times I had to ask for pain meds for Dave when they had claimed he already received them. After checking their records, as I asked, they found they hadn't – not at the fault of the nurses, but Dave knew that he need Tylenol 5 hours after his infusion, not during it. And after the fevers started, the morphine helped – but not during the rigors – he did demoral for that.
He was able to do 11 bags over the two weeks. Now we wait for scans to see if his immune system is responding. I pray – ALOT- that it's doing it's job.
On a side note, my husband also does plumbing and excavation – he worked during his radiation (prior to IL-2) as well. You just can't keep a fighting man down.
Best wishes to you and wife,
Maria
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- September 14, 2011 at 2:11 am
hi Mariah and Dave
im Rick and my wife Carol has stage 4 melanoma, I have been with her threw it all. i want to give yas a few pointers if i may. first of all try to make Dave drink as much water threw the IL2 treatments (Just as much as you can force him too) it helps with dehydration. 2nd: try to take notes of every time the nurse comes in to take his vitals. 3rd: write down every time they bring him his pain meds. we were at Vanderbuilt in nashville and thats an awsome hospital but the night nurses didnt give my wife all hers. she said she did but my notes told different.
also take notes of what Dave says while on IL2. and things he sees. because it can make him hulucinate. my wife saw things move that really didnt. and the week she came home from round 1 she saw a bunch of ferrys coming out of the laptop and twirled around to make a pretty butterfly lol. and every room in the house was so pretty and pink too lol
there were a few incidences like this that happened but it didnt last long.
i wish yas the best going threw this. just keep a positive attitude, pray alot, get everyone else to pray also. i believe prayer helped my wife. shes back to around 90% recovered thank God.
she had a big tummer removed from under her arm about 5 weeks ago and has some PT, my wifes a fighter and thats for sure. she broke her back in 2000 and the drs said she wouldnt ever walk again. 3 months later she was back to work. in 2008 she got breast cancer. she went for 45 treatments of radiation and came to work with me after every treatment. we do elect and plumbing and she was the best. in nov. we went to pennsylvania to see her youngest daughter have her baby, thats when she noticed a lump under her arm. it went from a small lump to a huge tummer and then spread into her lymphnodes. went from nothing to stage 4 in 3 months. the drs gave her 4 and a half months to 9 months to live. its been over 9 months now and shes on her way to recovery.
just hang in there Maria, and tell your husband he can beat this, with God any thing is possible. Faith can move a mountain
God bless yas both
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