Well, what a deeply unpleasant week this has been.

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pjknibbs
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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Mon, 28. Mar 22, 11:36

Forgot to update! Basically, I'm sitting on a chair hooked up to a machine via needles in both arms. It's taking blood from one, separating out the white blood cells and then pumping the rest back in the other arm. These cells will be sent off to a company to be modified in such a way that when they put them back in they'll attack the cancer directly--this is CAR-T in a nutshell. Probably be middle of May before I have to come back to hospital and have that done.

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Re: Well, what a deeply unpleasant week this has been.

Post by Praefectus classis » Mon, 28. Mar 22, 12:08

Thanks for the update Paul. Let's hope this does the trick.

All the best!
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Gavrushka
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Re: Well, what a deeply unpleasant week this has been.

Post by Gavrushka » Mon, 28. Mar 22, 12:45

Medical science is pretty mind-blowing stuff, and here's to it working its magic on you, Paul. Really hope the remaining journey successfully through this is as smooth as it can be.
“Man, my poor head is battered,” Ed said.

“That explains its unusual shape,” Styanar said, grinning openly now. “Although it does little to illuminate just why your jowls are so flaccid or why you have quite so many chins.”

“I…” Had she just called him fat? “I am just a different species, that’s all.”

“Well nature sure does have a sense of humour then,” Styanar said. “Shall we go inside? It’d not be a good idea for me to be spotted by others.”

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Re: Well, what a deeply unpleasant week this has been.

Post by fiksal » Mon, 28. Mar 22, 15:15

pjknibbs wrote:
Mon, 28. Mar 22, 11:36
Forgot to update! Basically, I'm sitting on a chair hooked up to a machine via needles in both arms. It's taking blood from one, separating out the white blood cells and then pumping the rest back in the other arm. These cells will be sent off to a company to be modified in such a way that when they put them back in they'll attack the cancer directly--this is CAR-T in a nutshell. Probably be middle of May before I have to come back to hospital and have that done.
what a wild procedure, have never heard of it.

does this significantly weaken your immune system in the mean time, meaning you have to be extra careful?
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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Mon, 28. Mar 22, 15:30

Weakened immune system is par for the course with lymphoma, it *is* a cancer affecting the cells that fight infections, after all. Just taking a few white blood cells isn't going to be an issue, though.

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Re: Well, what a deeply unpleasant week this has been.

Post by Falcrack » Mon, 28. Mar 22, 23:02

pjknibbs wrote:
Mon, 28. Mar 22, 15:30
Weakened immune system is par for the course with lymphoma, it *is* a cancer affecting the cells that fight infections, after all. Just taking a few white blood cells isn't going to be an issue, though.
What is the antigen being targeted by the CAR-T therapy? I did some work in graduate school modifying T cells in a similar fashion, giving them T cell receptors specific for HIV. I also recently was a reviewer for a paper looking at how CD21 expression on B cell lymphomas negatively affects the efficacy of CD19 CAR-T cell therapy.

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Re: Well, what a deeply unpleasant week this has been.

Post by fiksal » Tue, 29. Mar 22, 01:41

pjknibbs wrote:
Mon, 28. Mar 22, 15:30
Weakened immune system is par for the course with lymphoma, it *is* a cancer affecting the cells that fight infections, after all. Just taking a few white blood cells isn't going to be an issue, though.
okay, understood.

does it take long for them to do such modification?
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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Tue, 29. Mar 22, 07:32

Falcrack, you're asking questions way beyond my knowledge there. The cells will be modified to attack the cancer, that's all I know. Since the cancer I have is B-cell lymphoma I would assume they'll be designed to attack those, but beyond that, couldn't say.

Fiksal, it should take around 5-6 weeks, from what I'm told.

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Re: Well, what a deeply unpleasant week this has been.

Post by Falcrack » Tue, 29. Mar 22, 14:34

pjknibbs wrote:
Tue, 29. Mar 22, 07:32
Falcrack, you're asking questions way beyond my knowledge there. The cells will be modified to attack the cancer, that's all I know. Since the cancer I have is B-cell lymphoma I would assume they'll be designed to attack those, but beyond that, couldn't say.

Fiksal, it should take around 5-6 weeks, from what I'm told.
The paper I reviewed indicated that some B cell lymphomas express higher levels of a protein called CD21 on the surface. CD21 expression on these particular B cell lymphomas can potentially cause CD19 CAR-T cell therapy to be less effective. Since you have a B cell lymphoma, I assume that the therapy you are receiving is CD19 CAR-T cell therapy. You might want to ask your doctor if the linked article is of interest and relevant to your situation. Unfortunately it is behind a paywall, so you or your doctor will have to decide whether it is worth paying a bit to access it. It is a very good paper with some very compelling data.

https://pubmed.ncbi.nlm.nih.gov/35338522/

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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Tue, 29. Mar 22, 16:47

The thing is...this is the last therapy available. There isn't a choice other than this one, no others have worked. So it doesn't really matter to me if it's less likely to work on me or not, because the alternative is death, and there ain't any cure for that.

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Re: Well, what a deeply unpleasant week this has been.

Post by felter » Wed, 30. Mar 22, 03:02

Full respect to you, PJ. I've been knocking at death's door before, but it was only for a few days with a high chance of survival, so there is no way I can even imagine what you are going through long term. I do hope from the bottom of my heart that everything is going to work out for you.
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Re: Well, what a deeply unpleasant week this has been.

Post by Falcrack » Wed, 30. Mar 22, 05:32

All of us will one day have our own personal date with death. I personally am convinced that this life is not the end, that death is simply the beginning of the next phase of our existence, though I realize not everyone shares this view. I try therefore, admittedly imperfectly, to live my life now in preparation for the life to come. I believe that the people we become, shaped by the experiences in this life and our responses to them, will help shape our characteristics in eternity.

As to the CD19 CAR-T cell therapy, I apologize if I was presenting it from a somewhat negative aspect of potential failure. I should stress that CAR-T cell therapy is a very good therapy which can have some great outcomes. If it were found that the B cell lymphoma was CD21 negative, then this would give me a lot more hope as to the potential success of the therapy. This paper is still very new data, and it was just a study done with mice and B cell tumor lines in a somewhat artificial setting, so it is not yet possible to make definitive statements for human subjects one way or the other.

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Re: Well, what a deeply unpleasant week this has been.

Post by fiksal » Thu, 31. Mar 22, 00:42

Falcrack wrote:
Wed, 30. Mar 22, 05:32
All of us will one day have our own personal date with death. I personally am convinced that this life is not the end, that death is simply the beginning of the next phase of our existence, though I realize not everyone shares this view.
you are welcome to my thread about Atheism where we can discuss that aspect further
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Re: Well, what a deeply unpleasant week this has been.

Post by Falcrack » Thu, 31. Mar 22, 01:41

fiksal wrote:
Thu, 31. Mar 22, 00:42
Falcrack wrote:
Wed, 30. Mar 22, 05:32
All of us will one day have our own personal date with death. I personally am convinced that this life is not the end, that death is simply the beginning of the next phase of our existence, though I realize not everyone shares this view.
you are welcome to my thread about Atheism where we can discuss that aspect further
I've sent a PM to you, if you would rather discuss it that way.

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Re: Well, what a deeply unpleasant week this has been.

Post by Ebonyfly » Sun, 3. Apr 22, 22:58

Good luck PJ. Rooting for you.

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Re: Well, what a deeply unpleasant week this has been.

Post by Vesa » Tue, 5. Apr 22, 20:43

Good luck PJ, I have been out of the forums for quite a while, I'm in those years where you have barely the time and energy to play sometimes between family time and work, not much time to discuss here. I did manage to play X4 and X3:FL when they came out, though. I remember you already from the X2 times, never played X1. So, let's hope those augmented turbo-cells will work.

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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Fri, 8. Apr 22, 08:06

Going to be a busy day next Tuesday! Have two appointments at the Christie, one for a lung function test and the other a general fitness evaluation, then I have to head over to Wigan for another PET scan.

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Re: Well, what a deeply unpleasant week this has been.

Post by Gavrushka » Fri, 8. Apr 22, 09:22

Will be watching for updates and hope all goes well.

I'm sure your tests will go better than your car's MOT did!
“Man, my poor head is battered,” Ed said.

“That explains its unusual shape,” Styanar said, grinning openly now. “Although it does little to illuminate just why your jowls are so flaccid or why you have quite so many chins.”

“I…” Had she just called him fat? “I am just a different species, that’s all.”

“Well nature sure does have a sense of humour then,” Styanar said. “Shall we go inside? It’d not be a good idea for me to be spotted by others.”

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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Tue, 12. Apr 22, 07:47

I completely forgot it was half term and so I set off for the hospital at my usual ridiculously early hour--barely saw another car on the way apart from on the M60! Got here so early the door wasn't open and so I had to buzz Security to let me in...

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Re: Well, what a deeply unpleasant week this has been.

Post by pjknibbs » Wed, 13. Apr 22, 11:41

I am absolutely knackered. Four hospital appointments across three different hospitals in 2 days...not fun at all. I now at least get to rest for a week and a half before i have to do five days of straight radiotherapy appointments at the Oldham branch of Christie.

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