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- This topic has 36 replies, 12 voices, and was last updated 9 years, 3 months ago by
Mark_DC.
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- December 30, 2016 at 4:09 am
Today has not been dull. Two hours after my 4 AM infusion I had a reaction. It was intense shivering (rigors) similar to the ones from two days before but this time it was accompanied by what felt like an inability to breathe (Strider).
The trial lead investigator told me one more treatment could kill me. But I had only received 3 bags of IL-2, on top of low TIL yield.It was an agonizing decision to make, since I will die soon without treatment and this looked like my best shot.I asked the lead investigator what she would do if she were here in the bed not me and she said that she would go for another infusion.I finally said go for it, so long as all the countermeasures were in the room first: 50ml Demerol syringes, anaphylactic stuff and steroids.So then the lead investigator spoke to my regular oncologist. He reminded her that I already have had many immunotherapy treatments which could be causing all kinds of strange reactions. Also I respond very oddly sometimes to immunotherapy such as being one of the first patients to develop type one diabetes in response to ipi.They said there have been instances at MDA of people completing the first two portions of the treatment but for whatever reason not able to take any of the IL-2, and still have some form of response.They have to wait for six weeks for the next set of scans because the TIL works slowly and they cannot get any meaningful data until at least six weeks.Frankly I don't know if I'm going to last six weeks. So now I have to spend time and come up with my best Plan B. So I am going to go back to Celeste's post with the set of links, and Ed's link about with the De. Hamid interview. I need to really get wheels in motion now, not 6 weeks from now.I will be honest. That breathing thing was the worst experience of my life. And it is a response nobody has seen before. I honestly thought I might die.But, as you can see that was not the case.But now I have to recalibrate my personal 1 – 10 pain scale.When they told me no more bags of IL-2, it was both the best news and the worst news.Even though things are a bit more dire, I'm not giving up. Life is just too damn awesome to let go easily (although that was not my thinking during the Strider/Rigors combo).I feel compelled to say this last thing. I am not religious at all. But I believe deeply in God. When asked if I wanted another bag of potentially terminal IL-2 I prayed to God for an answer. Shorty after that was when I received the news that there would be no more IL-2. The need to make a decision was removed, that was his answer.Sorry for the typos–it's my accursed autocorrect.
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- December 30, 2016 at 4:25 am
Oh, sweetie! I am so sorry for how difficult and scary your day has been. And there is always my eternal question in relation to my own experience…. "Why in the H@!! does everything have to start/take place at the butt crack of dawn!!!?????" I mean 0400!! Really???? I'm even in the profession and I don't get it!!! Anyhow….hang in there. Rest up. I am still betting on those awesome cells. Big things can come in small packages. But…we got other plans, too! If need be! Take that, melanoma! Love, c
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- December 30, 2016 at 4:25 am
Oh, sweetie! I am so sorry for how difficult and scary your day has been. And there is always my eternal question in relation to my own experience…. "Why in the H@!! does everything have to start/take place at the butt crack of dawn!!!?????" I mean 0400!! Really???? I'm even in the profession and I don't get it!!! Anyhow….hang in there. Rest up. I am still betting on those awesome cells. Big things can come in small packages. But…we got other plans, too! If need be! Take that, melanoma! Love, c
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- December 30, 2016 at 4:25 am
Oh, sweetie! I am so sorry for how difficult and scary your day has been. And there is always my eternal question in relation to my own experience…. "Why in the H@!! does everything have to start/take place at the butt crack of dawn!!!?????" I mean 0400!! Really???? I'm even in the profession and I don't get it!!! Anyhow….hang in there. Rest up. I am still betting on those awesome cells. Big things can come in small packages. But…we got other plans, too! If need be! Take that, melanoma! Love, c
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- December 30, 2016 at 4:29 am
Wow, what a friggin day! It's hard to stay positive and have energy to move forward after a day like that, which just shows you're a pretty awesome guy and I am putting tons of positive energy out to you and your cells to kick some serious melanoma @ss!
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- December 30, 2016 at 4:29 am
Wow, what a friggin day! It's hard to stay positive and have energy to move forward after a day like that, which just shows you're a pretty awesome guy and I am putting tons of positive energy out to you and your cells to kick some serious melanoma @ss!
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- December 30, 2016 at 4:29 am
Wow, what a friggin day! It's hard to stay positive and have energy to move forward after a day like that, which just shows you're a pretty awesome guy and I am putting tons of positive energy out to you and your cells to kick some serious melanoma @ss!
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- December 30, 2016 at 5:22 am
What a scary ordeal. You are such a strong person, keep living, keep fighting!!!! We are here with you. You can beast this out, I know you can!!!!!!
xo Jen
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- December 30, 2016 at 5:22 am
What a scary ordeal. You are such a strong person, keep living, keep fighting!!!! We are here with you. You can beast this out, I know you can!!!!!!
xo Jen
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- December 30, 2016 at 5:22 am
What a scary ordeal. You are such a strong person, keep living, keep fighting!!!! We are here with you. You can beast this out, I know you can!!!!!!
xo Jen
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- December 30, 2016 at 8:01 am
Paul, I am truly so sorry that you are having to go through this. This was so hard to read because it was so intense and I really don't know what anyone would do if they were put in the position to make that kind of choice. Stay strong. I feel really hopeful for you.
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- December 30, 2016 at 8:01 am
Paul, I am truly so sorry that you are having to go through this. This was so hard to read because it was so intense and I really don't know what anyone would do if they were put in the position to make that kind of choice. Stay strong. I feel really hopeful for you.
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- December 30, 2016 at 8:01 am
Paul, I am truly so sorry that you are having to go through this. This was so hard to read because it was so intense and I really don't know what anyone would do if they were put in the position to make that kind of choice. Stay strong. I feel really hopeful for you.
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- December 30, 2016 at 8:28 am
You keep positive and keep kicking Mel Arse . You are a strong person and am praying for good response for you. These treatments do make it hard to cope with but like you said you love life and will not give up. Hope you feel better soon Hun.
scooby X.
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- December 30, 2016 at 8:28 am
You keep positive and keep kicking Mel Arse . You are a strong person and am praying for good response for you. These treatments do make it hard to cope with but like you said you love life and will not give up. Hope you feel better soon Hun.
scooby X.
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- December 30, 2016 at 8:28 am
You keep positive and keep kicking Mel Arse . You are a strong person and am praying for good response for you. These treatments do make it hard to cope with but like you said you love life and will not give up. Hope you feel better soon Hun.
scooby X.
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- December 30, 2016 at 9:05 am
Hi Paul,
Sorry for the tough time. Don't worry about either the amount of T-cells (more important is how efficient they are and am sure yours are ninja warriors), secondly don't worry about amount of IL-2. You have had such a strong reaction as your immune system is fighting so hard, that's a good thing.
Now, your body needs to rest and recuperate and even though it may take a while to see results from scans, there is a big battle going on inside you and your positive mental energy will help!!!
Stay positive, keep believing. Hope you can get out of the hospital as soon as possible.
Maria
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- December 30, 2016 at 9:05 am
Hi Paul,
Sorry for the tough time. Don't worry about either the amount of T-cells (more important is how efficient they are and am sure yours are ninja warriors), secondly don't worry about amount of IL-2. You have had such a strong reaction as your immune system is fighting so hard, that's a good thing.
Now, your body needs to rest and recuperate and even though it may take a while to see results from scans, there is a big battle going on inside you and your positive mental energy will help!!!
Stay positive, keep believing. Hope you can get out of the hospital as soon as possible.
Maria
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- December 30, 2016 at 9:05 am
Hi Paul,
Sorry for the tough time. Don't worry about either the amount of T-cells (more important is how efficient they are and am sure yours are ninja warriors), secondly don't worry about amount of IL-2. You have had such a strong reaction as your immune system is fighting so hard, that's a good thing.
Now, your body needs to rest and recuperate and even though it may take a while to see results from scans, there is a big battle going on inside you and your positive mental energy will help!!!
Stay positive, keep believing. Hope you can get out of the hospital as soon as possible.
Maria
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- December 30, 2016 at 1:46 pm
Crap Paul, didn´t foresee this happening… I˙m sure that it´s scary for anybody, even for a tough guy like you…
I have no knowledge to lead you towards a smart choice, but can and will be thinking of you, hoping that someting works…. I would put my faith in TIL, this thing has to work for somebody…. But no harm in looking into some other stuff, just to be prepared….
Hang in there Paul….
Love,
Patrisa
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- December 30, 2016 at 1:46 pm
Crap Paul, didn´t foresee this happening… I˙m sure that it´s scary for anybody, even for a tough guy like you…
I have no knowledge to lead you towards a smart choice, but can and will be thinking of you, hoping that someting works…. I would put my faith in TIL, this thing has to work for somebody…. But no harm in looking into some other stuff, just to be prepared….
Hang in there Paul….
Love,
Patrisa
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- December 30, 2016 at 1:46 pm
Crap Paul, didn´t foresee this happening… I˙m sure that it´s scary for anybody, even for a tough guy like you…
I have no knowledge to lead you towards a smart choice, but can and will be thinking of you, hoping that someting works…. I would put my faith in TIL, this thing has to work for somebody…. But no harm in looking into some other stuff, just to be prepared….
Hang in there Paul….
Love,
Patrisa
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- December 30, 2016 at 3:37 pm
Paul,
What a day Paul. Glad you got through the breathing thing. Don't even want to imagine what that must have been like.
I like to imagine what it's going to be like in a few years from now you telling your story. It is going to be one hell of a memoir.
I figured with your not so dull day the nurses have gotten a break from your jokes so here's one for them just for you to let them know you still mean business. What did the nurse say when she found a rectal thermometer in her pocket? "Some asshole has my pen!"
Brian
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- December 30, 2016 at 3:37 pm
Paul,
What a day Paul. Glad you got through the breathing thing. Don't even want to imagine what that must have been like.
I like to imagine what it's going to be like in a few years from now you telling your story. It is going to be one hell of a memoir.
I figured with your not so dull day the nurses have gotten a break from your jokes so here's one for them just for you to let them know you still mean business. What did the nurse say when she found a rectal thermometer in her pocket? "Some asshole has my pen!"
Brian
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- December 30, 2016 at 3:37 pm
Paul,
What a day Paul. Glad you got through the breathing thing. Don't even want to imagine what that must have been like.
I like to imagine what it's going to be like in a few years from now you telling your story. It is going to be one hell of a memoir.
I figured with your not so dull day the nurses have gotten a break from your jokes so here's one for them just for you to let them know you still mean business. What did the nurse say when she found a rectal thermometer in her pocket? "Some asshole has my pen!"
Brian
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- December 30, 2016 at 7:48 pm
Holy moly, Intense might be an understatement Paul, but glad to see that you are now on the other side of that experience, can't even begin to imagine….. I think many of us are like you in that we aren't religious but very aware of some sort of higher power. I always like George Carlin's imagery of The Big Electron. So I'm going to be praying to the Big Electron to pull you through this, I'll be praying hard. many many many prayers Paul. I agree, Life is too damn awesome.
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- December 30, 2016 at 7:48 pm
Holy moly, Intense might be an understatement Paul, but glad to see that you are now on the other side of that experience, can't even begin to imagine….. I think many of us are like you in that we aren't religious but very aware of some sort of higher power. I always like George Carlin's imagery of The Big Electron. So I'm going to be praying to the Big Electron to pull you through this, I'll be praying hard. many many many prayers Paul. I agree, Life is too damn awesome.
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- December 30, 2016 at 7:48 pm
Holy moly, Intense might be an understatement Paul, but glad to see that you are now on the other side of that experience, can't even begin to imagine….. I think many of us are like you in that we aren't religious but very aware of some sort of higher power. I always like George Carlin's imagery of The Big Electron. So I'm going to be praying to the Big Electron to pull you through this, I'll be praying hard. many many many prayers Paul. I agree, Life is too damn awesome.
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- December 31, 2016 at 2:54 pm
Thinking of you Paul. You are one heck of an inspiration! Keep it comimg!Annie
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- December 31, 2016 at 2:54 pm
Thinking of you Paul. You are one heck of an inspiration! Keep it comimg!Annie
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- December 31, 2016 at 2:54 pm
Thinking of you Paul. You are one heck of an inspiration! Keep it comimg!Annie
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