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- This topic has 24 replies, 5 voices, and was last updated 9 years, 3 months ago by
Spl25.
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- January 3, 2017 at 1:42 am
Hey Everybody,
So my TIL ended after only 3 bags of IL-2, and the day after that I got discharged from the hospital. However, my white blood cells are still depleted from the chemo, as they say, neutropenic. So I was not allowed to go home since it's too far from the hospital, just in case something bad happened.
I managed to get in two days at a special cancer hotel, which was bliss. Last night I had some killer Thai green curry.
But I felt a little warm at one point and my temperature was 100.9. According to protocol, I called my team and next thing I'm back in the hospital because of febrile neutropenia. But this is a walk in the park – just lolligagging around – no chemo, no TIL, just antibiotics.
I'm a little impatient, because they would not let me sleep last night, and I am tired today. I know I need to be scoping out my next plan of action but it's just too much for me today. All these sub-q's on my head are really getting annoying as they grow.
Tomorrow is another day and hopefully I can get a better night's sleep tonight.
– Paul
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- January 3, 2017 at 1:53 am
Hey, Paulster!!! So good to hear from you!! Sorry your are back under the control of those hospital peeps who have an agenda….NO SLEEP FOR YOU BUDDY!!! It is probably silly but I am glad they are being cautious. Green Thai curry, huh???? We are going to have to meet up for some Thai food someday!!!! Love it! Hang in there. Get some rest if you can. We can make a game plan the minute you need it!!! You are awesome! love, c
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- January 3, 2017 at 7:20 am
Hey Paul!
sorry to hear about how Til went though it might still do some benefit! Your posts on here are inspiring and so helpful to the rest of us. It looks like you aren't generating a lot of immune fighters at the moment but there are surely some ways to keep fighting while letting your system just heal and recover.
have you looked at PV-10 for the subqs? A nice curry diet with lots of turmeric? Does fasting/dieting help you with energy ever? I know it's an incredibly hard decision to make, but sounds like you could use a few weeks of simple comfortable recovery time while your support team carries some of the load getting the next trial lined up. Have a beer or a nice scotch if you can handle it. Heck, even get out in the sunshine for a bit for some natural vitamin D. Get a light massage. Just figure out a way to let your body know you don't hate it 🙂 I had a close friend go through many many Lymphoma treatments, and he was at his best when he actively papmpered himself in between, even when it was a very cautious form of pampering. I know it's hard to think that way when you're in pain.
Im not sure if you've worked with NIH at all, but I know they have some antigen-targeting trials they recommend if TIL fails. Those actually create the tumor fighters instead of just amplifying their numbers the way til does. Some are more promising than MART-1
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- January 3, 2017 at 12:59 pm
Hi Anon, could you be more specific about the antigen-targeting trials you talked about above? I am curious about what they are. Thanks Ed
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- January 3, 2017 at 12:59 pm
Hi Anon, could you be more specific about the antigen-targeting trials you talked about above? I am curious about what they are. Thanks Ed
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- January 3, 2017 at 12:59 pm
Hi Anon, could you be more specific about the antigen-targeting trials you talked about above? I am curious about what they are. Thanks Ed
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- January 3, 2017 at 7:20 am
Hey Paul!
sorry to hear about how Til went though it might still do some benefit! Your posts on here are inspiring and so helpful to the rest of us. It looks like you aren't generating a lot of immune fighters at the moment but there are surely some ways to keep fighting while letting your system just heal and recover.
have you looked at PV-10 for the subqs? A nice curry diet with lots of turmeric? Does fasting/dieting help you with energy ever? I know it's an incredibly hard decision to make, but sounds like you could use a few weeks of simple comfortable recovery time while your support team carries some of the load getting the next trial lined up. Have a beer or a nice scotch if you can handle it. Heck, even get out in the sunshine for a bit for some natural vitamin D. Get a light massage. Just figure out a way to let your body know you don't hate it 🙂 I had a close friend go through many many Lymphoma treatments, and he was at his best when he actively papmpered himself in between, even when it was a very cautious form of pampering. I know it's hard to think that way when you're in pain.
Im not sure if you've worked with NIH at all, but I know they have some antigen-targeting trials they recommend if TIL fails. Those actually create the tumor fighters instead of just amplifying their numbers the way til does. Some are more promising than MART-1
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- January 3, 2017 at 7:20 am
Hey Paul!
sorry to hear about how Til went though it might still do some benefit! Your posts on here are inspiring and so helpful to the rest of us. It looks like you aren't generating a lot of immune fighters at the moment but there are surely some ways to keep fighting while letting your system just heal and recover.
have you looked at PV-10 for the subqs? A nice curry diet with lots of turmeric? Does fasting/dieting help you with energy ever? I know it's an incredibly hard decision to make, but sounds like you could use a few weeks of simple comfortable recovery time while your support team carries some of the load getting the next trial lined up. Have a beer or a nice scotch if you can handle it. Heck, even get out in the sunshine for a bit for some natural vitamin D. Get a light massage. Just figure out a way to let your body know you don't hate it 🙂 I had a close friend go through many many Lymphoma treatments, and he was at his best when he actively papmpered himself in between, even when it was a very cautious form of pampering. I know it's hard to think that way when you're in pain.
Im not sure if you've worked with NIH at all, but I know they have some antigen-targeting trials they recommend if TIL fails. Those actually create the tumor fighters instead of just amplifying their numbers the way til does. Some are more promising than MART-1
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- January 3, 2017 at 1:53 am
Hey, Paulster!!! So good to hear from you!! Sorry your are back under the control of those hospital peeps who have an agenda….NO SLEEP FOR YOU BUDDY!!! It is probably silly but I am glad they are being cautious. Green Thai curry, huh???? We are going to have to meet up for some Thai food someday!!!! Love it! Hang in there. Get some rest if you can. We can make a game plan the minute you need it!!! You are awesome! love, c
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- January 3, 2017 at 1:53 am
Hey, Paulster!!! So good to hear from you!! Sorry your are back under the control of those hospital peeps who have an agenda….NO SLEEP FOR YOU BUDDY!!! It is probably silly but I am glad they are being cautious. Green Thai curry, huh???? We are going to have to meet up for some Thai food someday!!!! Love it! Hang in there. Get some rest if you can. We can make a game plan the minute you need it!!! You are awesome! love, c
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- January 3, 2017 at 2:38 am
Hey Paul,
Glad to see you are keeping up the good outlook despite the setbacks. I got out of the hospital two weeks ago. I swear it was the best day I can remember. I felt like I was in prison. We must assume TIL did not go as planned and we are disappointed. For you to endure so much, for so little. Join the limbo club. I too have no idea what to do next. After surgically removing my dastardly, stubborn tumors, I'm now off all treatments. Getting a break from doctors sounds pretty good, but soon I'll start to wonder what's going on inside? Will the beast be tamed, at least for a while, or will I be facing the next cycle of drug treatments? Trials are all that's left, and frankly I have been a non-responder to just about everything. We will await your next move. Seems like Epacadostat is the next big thing in checkpoint inhibitors. Maybe that will be the silver bullet? Keep posting as you remain an inspiration on how to handle adversity and may 2017 be the year you vanquish the beast.
Gary
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- January 3, 2017 at 2:38 am
Hey Paul,
Glad to see you are keeping up the good outlook despite the setbacks. I got out of the hospital two weeks ago. I swear it was the best day I can remember. I felt like I was in prison. We must assume TIL did not go as planned and we are disappointed. For you to endure so much, for so little. Join the limbo club. I too have no idea what to do next. After surgically removing my dastardly, stubborn tumors, I'm now off all treatments. Getting a break from doctors sounds pretty good, but soon I'll start to wonder what's going on inside? Will the beast be tamed, at least for a while, or will I be facing the next cycle of drug treatments? Trials are all that's left, and frankly I have been a non-responder to just about everything. We will await your next move. Seems like Epacadostat is the next big thing in checkpoint inhibitors. Maybe that will be the silver bullet? Keep posting as you remain an inspiration on how to handle adversity and may 2017 be the year you vanquish the beast.
Gary
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- January 3, 2017 at 2:38 am
Hey Paul,
Glad to see you are keeping up the good outlook despite the setbacks. I got out of the hospital two weeks ago. I swear it was the best day I can remember. I felt like I was in prison. We must assume TIL did not go as planned and we are disappointed. For you to endure so much, for so little. Join the limbo club. I too have no idea what to do next. After surgically removing my dastardly, stubborn tumors, I'm now off all treatments. Getting a break from doctors sounds pretty good, but soon I'll start to wonder what's going on inside? Will the beast be tamed, at least for a while, or will I be facing the next cycle of drug treatments? Trials are all that's left, and frankly I have been a non-responder to just about everything. We will await your next move. Seems like Epacadostat is the next big thing in checkpoint inhibitors. Maybe that will be the silver bullet? Keep posting as you remain an inspiration on how to handle adversity and may 2017 be the year you vanquish the beast.
Gary
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- January 3, 2017 at 5:11 am
Paul, Good to hear from you. Happy New Year. Hope your rooms have been facing the great sunsets and sunrises with the clear skies and a great view of the beautiful snow (funny none here in Monroe, go figure). Keep getting after it and some comfort in your own home when you get there. Let us know if you need anything. Adriana has scans on Thurs. and followup on Tuesday and hopefully eyeglasses at Harborview to correct that double vision on Wednesday so we will be down a bunch.
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- January 3, 2017 at 5:11 am
Paul, Good to hear from you. Happy New Year. Hope your rooms have been facing the great sunsets and sunrises with the clear skies and a great view of the beautiful snow (funny none here in Monroe, go figure). Keep getting after it and some comfort in your own home when you get there. Let us know if you need anything. Adriana has scans on Thurs. and followup on Tuesday and hopefully eyeglasses at Harborview to correct that double vision on Wednesday so we will be down a bunch.
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- January 3, 2017 at 5:11 am
Paul, Good to hear from you. Happy New Year. Hope your rooms have been facing the great sunsets and sunrises with the clear skies and a great view of the beautiful snow (funny none here in Monroe, go figure). Keep getting after it and some comfort in your own home when you get there. Let us know if you need anything. Adriana has scans on Thurs. and followup on Tuesday and hopefully eyeglasses at Harborview to correct that double vision on Wednesday so we will be down a bunch.
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- January 3, 2017 at 5:11 am
Paul, Good to hear from you. Happy New Year. Hope your rooms have been facing the great sunsets and sunrises with the clear skies and a great view of the beautiful snow (funny none here in Monroe, go figure). Keep getting after it and some comfort in your own home when you get there. Let us know if you need anything. Adriana has scans on Thurs. and followup on Tuesday and hopefully eyeglasses at Harborview to correct that double vision on Wednesday so we will be down a bunch.
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- January 3, 2017 at 5:11 am
Paul, Good to hear from you. Happy New Year. Hope your rooms have been facing the great sunsets and sunrises with the clear skies and a great view of the beautiful snow (funny none here in Monroe, go figure). Keep getting after it and some comfort in your own home when you get there. Let us know if you need anything. Adriana has scans on Thurs. and followup on Tuesday and hopefully eyeglasses at Harborview to correct that double vision on Wednesday so we will be down a bunch.
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- January 3, 2017 at 5:11 am
Paul, Good to hear from you. Happy New Year. Hope your rooms have been facing the great sunsets and sunrises with the clear skies and a great view of the beautiful snow (funny none here in Monroe, go figure). Keep getting after it and some comfort in your own home when you get there. Let us know if you need anything. Adriana has scans on Thurs. and followup on Tuesday and hopefully eyeglasses at Harborview to correct that double vision on Wednesday so we will be down a bunch.
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