Well, what a deeply unpleasant week this has been.

[Warenwolf]

On an unrelated issue, it's lovely how my mother always asks "Can't they just operate to remove the cancer?" when I mention the next treatment, without apparently realising that lymphoma doesn't always provide a nice, clean tumour to operate on like her breast cancer did (especially since it had already spread to my spleen before we even started treatment).

Well, without knowing your mother, this is of course purely speculative from my side - that may very well be her (albeit from your perspective an irrational) coping mechanism. I have been told that my mother was just like that when I was in a coma* some years ago - having hard to time to accept that the situation was outside anyone's control, finding always an argument that it was not so.

[Steel]

1 in 3 is based on 2-4 year survivals, yes, and the "dead inside 2 years" is also based on the doctor's experience of these cancers when they don't respond to treatment.

So sorry to read this Paul. I'll hold out hope and positive thoughts that the best outcome is forthcoming.

Thinking of you.

[pjknibbs]

Thanks, Steel.

I know I've complained about it before, but the hospital really need to do something about their communication. I've just received a letter telling me I'm booked for a biopsy on 10th March. The first I hear about something like this shouldn't be the standard boilerplate appointment template letter, I'd kind of like the doctors to have mentioned it beforehand! Although I suppose this is preferable to the more commonplace being booked in on an appointment on ridiculously short notice...

[Steel]

Thanks, Steel.

I know I've complained about it before, but the hospital really need to do something about their communication. I've just received a letter telling me I'm booked for a biopsy on 10th March. The first I hear about something like this shouldn't be the standard boilerplate appointment template letter, I'd kind of like the doctors to have mentioned it beforehand! Although I suppose this is preferable to the more commonplace being booked in on an appointment on ridiculously short notice...

Point of care is amazing in the NHS. Truly some wonderful people. I've had a fair bit of first hand experience myself lately for various reasons.

Administration system is shocking. I really don't know how they can make such a complete ass of it, but they do, continually and it affects point of care badly.

It's easier to to do it for them (calls, emails, etc). Best wishes for the 10th!

[(/\)arped]

Wishing you well, pjknibbs. Remember your name from this forum from a long way back. Definitely recommend the advice to keep chasing with your own calls and mails, I guess they're too swamped to keep track themselves. End of last year I was told by my GP they'd book me in for an ultrasound to be on the safe side after a dodgy liver function test result. Was shocked to receive an NHS letter within the week with an appoint for 2 day's time. Wow, how quick! I thought. And off the back of the pandemic no less. Impressive. The letter turned up around 12pm?

By 13.30 I had a call

"Yes, sorry, due to staff sickness we'll have to cancel your appointment I'm afraid"

Fair enough, hadn't even booked the time off for it yet. Ended up having it about 3 weeks later (still pretty damn quick). The doctor doing the ultrasound described my liver as "lovely" so I think that means I'm alright. Anyway, all the best to you

[pjknibbs]

Yeah, but the problem in this case was that I literally didn't know a biopsy was required because the doctor hadn't told me, so what would I have called about? I already had an appointment for the 15th and as far as I knew that was the only one I needed! Just calling every day asking "Any new appointments?" seems to me to be a waste of both mine and the hospital's time.

[pjknibbs]

Well, as if I didn't have enough problems--have an appointment at the Christie for a biopsy tomorrow morning, and my car just failed its MoT with a problem the garage can't fix for several days. So I've had to book a taxi to make the journey, which'll cost £25. I mean, in the grand scheme of things it's not a major problem and I can easily afford it, but it's another worry I could have done without! Guess it's my fault for booking the car in for an MoT the day before a major hospital appointment...

[Gavrushka]

I'd rather you used up any remaining bad luck on your car than on other matters!

Regardless, I hope tomorrow's appointment goes smoothly.

[greypanther]

Fair point well made Gavrushka.

Hope all goes well tomorrow. Why a biopsy now? Are they after a baseline of some sort, do they can better judge progress with treatment?

[pjknibbs]

Checking to see if a new lesion they saw on the PET scan is more lymphoma, I think.

[pjknibbs]

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.

[Praefectus classis]

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

All the best!

[Gavrushka]

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.

[fiksal]

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?

[pjknibbs]

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.

[Falcrack]

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.

[fiksal]

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?

[pjknibbs]

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.

[Falcrack]

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/

[pjknibbs]

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.