› Forums › General Melanoma Community › 14 to Charlie
- This topic has 51 replies, 13 voices, and was last updated 8 years, 4 months ago by Charlie S.
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- May 6, 2016 at 12:08 am
Whew. I really had a great time when Janis Joplin and Joe Walsh came into my room in ICU and we had a super jam session.
The nurses are so kind " Well, Charlie if you saw them and played with them, they MUST have been here and just slipped out before anybody else saw them?"
Yeah, rightio; just be sure and leave some meat on a plate in the corner for when Bigfoot drops by later.
14 is enuf right now, so now comes the lasik push and probably an interesting mind warp.
Let's see here 14 bags @7 grand a copy is………………ah! 98 grand.
At those prices I REALLY need to get a good buzz.
Wowee, some major muffler burn going on here though.
I'm pretty sure I will lose my mind tonight because the wallpaper here looks like the inside of an infected colon and I have no prior visual of that so probably no more posts until I dry out.
Cheers,
Charlie
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- May 6, 2016 at 1:46 am
If it makes you feel any better.. 4 infusions of Ipi was almost $200,000… obviously I don't have to pay that, but it's pretty crazy to see on the pharmacy bill.
Say hi to Bigfoot ๐
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- May 6, 2016 at 1:46 am
If it makes you feel any better.. 4 infusions of Ipi was almost $200,000… obviously I don't have to pay that, but it's pretty crazy to see on the pharmacy bill.
Say hi to Bigfoot ๐
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- May 6, 2016 at 1:46 am
If it makes you feel any better.. 4 infusions of Ipi was almost $200,000… obviously I don't have to pay that, but it's pretty crazy to see on the pharmacy bill.
Say hi to Bigfoot ๐
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- May 6, 2016 at 7:37 am
Just wait until you peel. Think of it as insurance paying for a chemical laser peel and then you get to do it again! Yes, you can have peel on top of peel. It looked like it was snowing wherever I went, but this is during summer in Hawaii! I didn't know you can peel the inside of your eyelids and nostrils, but you can.
Yes, and my A– hole was so sore I would cry before I exploded. You would have thought something crawled up inside me and died. Poo-porrui or the One-drop helped to mitigate things a bit.
It was so cruel, they put my leash on just short of the commode so I was forced to use the stupid potty chair. Talk about humiliating. Then when finished, said I coldn't shower since I was no longer a patient. My doc said just use the one in ICU. I laughed because there isn't a shower in the ICU, I mean think about it?! Most are in a coma and could care less.
I took a shower in the cardiac ward instead. It was the bestest shower I have ever had.
I only "dreamed" about taking my dogs to the river for a swim. I was speaking to the ceiling tiles at the time.
14 – totally awesome!
Hope it works for you. At least the recovery is fairly quick.
KK
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- May 9, 2016 at 11:57 pm
You just HAD to remind me of the peel, didn;t you?????
Yes, it has started and will only get worse after my week off and then back on.
EVERY bit of my body is starting to flake up and peel.
My mind is coming back but still a bit fuzzy and spacy.
No more Joe Walsh though. Crap.
My doc asked me is anything was familiar from the last time I did this.
My response…………………..Yeah, it still sucks.
Always nice to hear from you Kim
Cheers,
Charlie
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- May 9, 2016 at 11:57 pm
You just HAD to remind me of the peel, didn;t you?????
Yes, it has started and will only get worse after my week off and then back on.
EVERY bit of my body is starting to flake up and peel.
My mind is coming back but still a bit fuzzy and spacy.
No more Joe Walsh though. Crap.
My doc asked me is anything was familiar from the last time I did this.
My response…………………..Yeah, it still sucks.
Always nice to hear from you Kim
Cheers,
Charlie
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- May 9, 2016 at 11:57 pm
You just HAD to remind me of the peel, didn;t you?????
Yes, it has started and will only get worse after my week off and then back on.
EVERY bit of my body is starting to flake up and peel.
My mind is coming back but still a bit fuzzy and spacy.
No more Joe Walsh though. Crap.
My doc asked me is anything was familiar from the last time I did this.
My response…………………..Yeah, it still sucks.
Always nice to hear from you Kim
Cheers,
Charlie
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- May 6, 2016 at 7:37 am
Just wait until you peel. Think of it as insurance paying for a chemical laser peel and then you get to do it again! Yes, you can have peel on top of peel. It looked like it was snowing wherever I went, but this is during summer in Hawaii! I didn't know you can peel the inside of your eyelids and nostrils, but you can.
Yes, and my A– hole was so sore I would cry before I exploded. You would have thought something crawled up inside me and died. Poo-porrui or the One-drop helped to mitigate things a bit.
It was so cruel, they put my leash on just short of the commode so I was forced to use the stupid potty chair. Talk about humiliating. Then when finished, said I coldn't shower since I was no longer a patient. My doc said just use the one in ICU. I laughed because there isn't a shower in the ICU, I mean think about it?! Most are in a coma and could care less.
I took a shower in the cardiac ward instead. It was the bestest shower I have ever had.
I only "dreamed" about taking my dogs to the river for a swim. I was speaking to the ceiling tiles at the time.
14 – totally awesome!
Hope it works for you. At least the recovery is fairly quick.
KK
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- May 6, 2016 at 7:37 am
Just wait until you peel. Think of it as insurance paying for a chemical laser peel and then you get to do it again! Yes, you can have peel on top of peel. It looked like it was snowing wherever I went, but this is during summer in Hawaii! I didn't know you can peel the inside of your eyelids and nostrils, but you can.
Yes, and my A– hole was so sore I would cry before I exploded. You would have thought something crawled up inside me and died. Poo-porrui or the One-drop helped to mitigate things a bit.
It was so cruel, they put my leash on just short of the commode so I was forced to use the stupid potty chair. Talk about humiliating. Then when finished, said I coldn't shower since I was no longer a patient. My doc said just use the one in ICU. I laughed because there isn't a shower in the ICU, I mean think about it?! Most are in a coma and could care less.
I took a shower in the cardiac ward instead. It was the bestest shower I have ever had.
I only "dreamed" about taking my dogs to the river for a swim. I was speaking to the ceiling tiles at the time.
14 – totally awesome!
Hope it works for you. At least the recovery is fairly quick.
KK
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- May 6, 2016 at 12:30 pm
I am so jealous of your jam session!! You just had the two funkiest musicians making beautiful music with you. Keep jamming, Charlie! ๐ -
- May 6, 2016 at 12:30 pm
I am so jealous of your jam session!! You just had the two funkiest musicians making beautiful music with you. Keep jamming, Charlie! ๐ -
- May 6, 2016 at 12:30 pm
I am so jealous of your jam session!! You just had the two funkiest musicians making beautiful music with you. Keep jamming, Charlie! ๐ -
- May 6, 2016 at 2:39 pm
I just took a moment to catch up a bit on what's going on with you. In particular I like your explanation of why you chose IL-2 agin over some of the newer options. I identify with that quite a bit. I started with IL-2 when I hit stage 4 in 2011 and it also worked for me (unfortunately not for very long). I also haven't been particularly impressed with many of the newer options- particularly Ipi and now the combo of that and PD-1. I never liked Ipi, but ended up with it anyway, mostly based on insurance (and brain mets), failed that pretty spectacularly, then was basically forced onto the BRAF/MEK combo, which I didn't really want to do, but there were no other options as my brain mets kept me out of other trials and they were't willing to do IL-2 again (pesky brain mets). That failed pretty quickly as well. I ended up on PD-1, which did remarkably well for me for almost a year and a half, but then started to fail, leaving me where I am now. The option that all my docters were suggesting was to do the Ipi/PD-1 combo, but quite frankly, I see no point in trying a combination of drugs each of which have already failed, especially given that there is no data on people who have used the drugs in the past, but there is good evidence that the side effects are worse and there are more of them.
I remember well what it was like to go through IL-2. I didn't count the number of bags I got each time, but I remember well the experience, which, as they told me it would be, was not pleasant. I do remember though that recovery was relatively quick, so I'm hoping that this works for you and wishing a quick recovery for you as welll. I have spent a lot of time in the past arguing for the choice of IL-2 with those who would argue that it should never be used. It has value and it's always a personal choice, and like you say- what works for one does not always work for another.
Best of luck to you- hope it works again.
-Eva
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- May 6, 2016 at 2:39 pm
I just took a moment to catch up a bit on what's going on with you. In particular I like your explanation of why you chose IL-2 agin over some of the newer options. I identify with that quite a bit. I started with IL-2 when I hit stage 4 in 2011 and it also worked for me (unfortunately not for very long). I also haven't been particularly impressed with many of the newer options- particularly Ipi and now the combo of that and PD-1. I never liked Ipi, but ended up with it anyway, mostly based on insurance (and brain mets), failed that pretty spectacularly, then was basically forced onto the BRAF/MEK combo, which I didn't really want to do, but there were no other options as my brain mets kept me out of other trials and they were't willing to do IL-2 again (pesky brain mets). That failed pretty quickly as well. I ended up on PD-1, which did remarkably well for me for almost a year and a half, but then started to fail, leaving me where I am now. The option that all my docters were suggesting was to do the Ipi/PD-1 combo, but quite frankly, I see no point in trying a combination of drugs each of which have already failed, especially given that there is no data on people who have used the drugs in the past, but there is good evidence that the side effects are worse and there are more of them.
I remember well what it was like to go through IL-2. I didn't count the number of bags I got each time, but I remember well the experience, which, as they told me it would be, was not pleasant. I do remember though that recovery was relatively quick, so I'm hoping that this works for you and wishing a quick recovery for you as welll. I have spent a lot of time in the past arguing for the choice of IL-2 with those who would argue that it should never be used. It has value and it's always a personal choice, and like you say- what works for one does not always work for another.
Best of luck to you- hope it works again.
-Eva
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- May 6, 2016 at 2:39 pm
I just took a moment to catch up a bit on what's going on with you. In particular I like your explanation of why you chose IL-2 agin over some of the newer options. I identify with that quite a bit. I started with IL-2 when I hit stage 4 in 2011 and it also worked for me (unfortunately not for very long). I also haven't been particularly impressed with many of the newer options- particularly Ipi and now the combo of that and PD-1. I never liked Ipi, but ended up with it anyway, mostly based on insurance (and brain mets), failed that pretty spectacularly, then was basically forced onto the BRAF/MEK combo, which I didn't really want to do, but there were no other options as my brain mets kept me out of other trials and they were't willing to do IL-2 again (pesky brain mets). That failed pretty quickly as well. I ended up on PD-1, which did remarkably well for me for almost a year and a half, but then started to fail, leaving me where I am now. The option that all my docters were suggesting was to do the Ipi/PD-1 combo, but quite frankly, I see no point in trying a combination of drugs each of which have already failed, especially given that there is no data on people who have used the drugs in the past, but there is good evidence that the side effects are worse and there are more of them.
I remember well what it was like to go through IL-2. I didn't count the number of bags I got each time, but I remember well the experience, which, as they told me it would be, was not pleasant. I do remember though that recovery was relatively quick, so I'm hoping that this works for you and wishing a quick recovery for you as welll. I have spent a lot of time in the past arguing for the choice of IL-2 with those who would argue that it should never be used. It has value and it's always a personal choice, and like you say- what works for one does not always work for another.
Best of luck to you- hope it works again.
-Eva
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- May 7, 2016 at 12:21 am
I only had surgery and a total of 23 bags of IL-2. I have been NED for 6 years in 2 more months! If it works and you are a complete responder, you have a better than average chance of a durable lifelong remission. The newer drugs haven't been around that long to have a track record like that. When it works, it can work really well. Too bad only a small percentage respond. Then again, the new drugs may be better, just not durable.
IL-2 should not be relagated to mothballs, it still has its place.
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- May 7, 2016 at 12:21 am
I only had surgery and a total of 23 bags of IL-2. I have been NED for 6 years in 2 more months! If it works and you are a complete responder, you have a better than average chance of a durable lifelong remission. The newer drugs haven't been around that long to have a track record like that. When it works, it can work really well. Too bad only a small percentage respond. Then again, the new drugs may be better, just not durable.
IL-2 should not be relagated to mothballs, it still has its place.
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- May 7, 2016 at 12:21 am
I only had surgery and a total of 23 bags of IL-2. I have been NED for 6 years in 2 more months! If it works and you are a complete responder, you have a better than average chance of a durable lifelong remission. The newer drugs haven't been around that long to have a track record like that. When it works, it can work really well. Too bad only a small percentage respond. Then again, the new drugs may be better, just not durable.
IL-2 should not be relagated to mothballs, it still has its place.
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- May 6, 2016 at 5:04 pm
You are a trooper. Hang in there and enjoy the buzz!
Kevin
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- May 6, 2016 at 5:04 pm
You are a trooper. Hang in there and enjoy the buzz!
Kevin
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- May 6, 2016 at 5:04 pm
You are a trooper. Hang in there and enjoy the buzz!
Kevin
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- May 7, 2016 at 4:09 pm
Joe Walsh! I've come late in life into appreciating his solo albums.
Anyhow, freedom/walking papers right around the corner for you now!!!
I think of IL2 now as a kind of "extreme sport". For me, each time was like facing jumping into a tunnel of unknown length. Kind of like the "tunnels" in the movie 2001 or Contact but not as fun, more like descending into a kind of Hades. Until 'emergence' it would feel like a blanket party, without end.
I got to 10, 7, 9 and 4 bags. After the first or second bag I would not be in any kind shape to type into a computer.
My current oncologist does IL-2. He mentioned it as a possibility if the treatment I've been getting (Opdivo plus another drug) didn't work. He still treats with it. It stopped 8 lung mets in 2010 that have still not come back.
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- May 7, 2016 at 4:09 pm
Joe Walsh! I've come late in life into appreciating his solo albums.
Anyhow, freedom/walking papers right around the corner for you now!!!
I think of IL2 now as a kind of "extreme sport". For me, each time was like facing jumping into a tunnel of unknown length. Kind of like the "tunnels" in the movie 2001 or Contact but not as fun, more like descending into a kind of Hades. Until 'emergence' it would feel like a blanket party, without end.
I got to 10, 7, 9 and 4 bags. After the first or second bag I would not be in any kind shape to type into a computer.
My current oncologist does IL-2. He mentioned it as a possibility if the treatment I've been getting (Opdivo plus another drug) didn't work. He still treats with it. It stopped 8 lung mets in 2010 that have still not come back.
-
- May 7, 2016 at 4:09 pm
Joe Walsh! I've come late in life into appreciating his solo albums.
Anyhow, freedom/walking papers right around the corner for you now!!!
I think of IL2 now as a kind of "extreme sport". For me, each time was like facing jumping into a tunnel of unknown length. Kind of like the "tunnels" in the movie 2001 or Contact but not as fun, more like descending into a kind of Hades. Until 'emergence' it would feel like a blanket party, without end.
I got to 10, 7, 9 and 4 bags. After the first or second bag I would not be in any kind shape to type into a computer.
My current oncologist does IL-2. He mentioned it as a possibility if the treatment I've been getting (Opdivo plus another drug) didn't work. He still treats with it. It stopped 8 lung mets in 2010 that have still not come back.
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- May 8, 2016 at 5:20 am
Damnit Charlie!!! I hadn't seen you around here much though I honestly only check in periodically. I had hope that after your war, you retired and were living the good life. You we're one of the first people to respond to me 5 years ago….I remember clearly, "chewing bubble gum and kicking ass" is what you did and you were all out of bubble gum. Why do I have this feeling your out of bubble gum again? Hang in there brother…
Josh
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- May 8, 2016 at 5:20 am
Damnit Charlie!!! I hadn't seen you around here much though I honestly only check in periodically. I had hope that after your war, you retired and were living the good life. You we're one of the first people to respond to me 5 years ago….I remember clearly, "chewing bubble gum and kicking ass" is what you did and you were all out of bubble gum. Why do I have this feeling your out of bubble gum again? Hang in there brother…
Josh
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- May 8, 2016 at 5:20 am
Damnit Charlie!!! I hadn't seen you around here much though I honestly only check in periodically. I had hope that after your war, you retired and were living the good life. You we're one of the first people to respond to me 5 years ago….I remember clearly, "chewing bubble gum and kicking ass" is what you did and you were all out of bubble gum. Why do I have this feeling your out of bubble gum again? Hang in there brother…
Josh
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- May 8, 2016 at 7:28 pm
Charlie,
I hardly ever reply to posts any more unless I have experience in the area but you hold a special spot in my heart. You have always been so great with helping everyone and passing on wonderful information. Keep posting and keep sharing you vivid experiences, you never know…they might help someone else. In any case they are entertaining.
I just wanted to let you know how much to mean to all of us. Hang in there and keep counting those flowers on the wall (or in your case colon twists).
Mary
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- May 8, 2016 at 7:28 pm
Charlie,
I hardly ever reply to posts any more unless I have experience in the area but you hold a special spot in my heart. You have always been so great with helping everyone and passing on wonderful information. Keep posting and keep sharing you vivid experiences, you never know…they might help someone else. In any case they are entertaining.
I just wanted to let you know how much to mean to all of us. Hang in there and keep counting those flowers on the wall (or in your case colon twists).
Mary
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- May 8, 2016 at 7:28 pm
Charlie,
I hardly ever reply to posts any more unless I have experience in the area but you hold a special spot in my heart. You have always been so great with helping everyone and passing on wonderful information. Keep posting and keep sharing you vivid experiences, you never know…they might help someone else. In any case they are entertaining.
I just wanted to let you know how much to mean to all of us. Hang in there and keep counting those flowers on the wall (or in your case colon twists).
Mary
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- May 9, 2016 at 12:08 am
Hi Charlie
Gave Laura and Amber and Diane and Andrew the update of the IL2 treatment
Good luck next round and we all hope to see you this summer either down there or up here in NJ for a get together
Going to Vancouver in Washington State as I mentioned.for work but not in the mood but there are worse places for our factories
If you want some bad electric guitar in your room, I will come and play but that would ruin any sleep for you!.
See you
Mike K
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- May 9, 2016 at 12:08 am
Hi Charlie
Gave Laura and Amber and Diane and Andrew the update of the IL2 treatment
Good luck next round and we all hope to see you this summer either down there or up here in NJ for a get together
Going to Vancouver in Washington State as I mentioned.for work but not in the mood but there are worse places for our factories
If you want some bad electric guitar in your room, I will come and play but that would ruin any sleep for you!.
See you
Mike K
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- May 9, 2016 at 12:08 am
Hi Charlie
Gave Laura and Amber and Diane and Andrew the update of the IL2 treatment
Good luck next round and we all hope to see you this summer either down there or up here in NJ for a get together
Going to Vancouver in Washington State as I mentioned.for work but not in the mood but there are worse places for our factories
If you want some bad electric guitar in your room, I will come and play but that would ruin any sleep for you!.
See you
Mike K
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- May 10, 2016 at 1:51 am
You are a true warrior !!! Keep on fighting and do whatever you can to outmanueur the beast!!! Our thoughts are with you! You truly are an inspiration for so many of us!!!
Maureen
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- May 10, 2016 at 1:51 am
You are a true warrior !!! Keep on fighting and do whatever you can to outmanueur the beast!!! Our thoughts are with you! You truly are an inspiration for so many of us!!!
Maureen
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- May 10, 2016 at 1:51 am
You are a true warrior !!! Keep on fighting and do whatever you can to outmanueur the beast!!! Our thoughts are with you! You truly are an inspiration for so many of us!!!
Maureen
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- May 16, 2016 at 12:57 am
Update. After getting copies of my medical reports, I only did twelve bags.
One bag every eight hours for four days.
Monday through Thursday.
I think I can legitimally claim I was under the influence of drugs when I made that post.
Once agan, that is my story and I am sticking to it. ๐
Cheers,
Charlie S
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- May 16, 2016 at 12:57 am
Update. After getting copies of my medical reports, I only did twelve bags.
One bag every eight hours for four days.
Monday through Thursday.
I think I can legitimally claim I was under the influence of drugs when I made that post.
Once agan, that is my story and I am sticking to it. ๐
Cheers,
Charlie S
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- May 16, 2016 at 12:57 am
Update. After getting copies of my medical reports, I only did twelve bags.
One bag every eight hours for four days.
Monday through Thursday.
I think I can legitimally claim I was under the influence of drugs when I made that post.
Once agan, that is my story and I am sticking to it. ๐
Cheers,
Charlie S
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