Car-t treatment

Hi Nick, No, I moved from Thames Valley in May, where I’d had my previous treatment, which was excellent.  That’s very reassuring to know regarding SCT. Highlander has also, very kindly, told me that in his experience 95% of people feel the SCT was not as bad as they were expecting. The hair loss, whilst a relatively superficial consideration, is daunting as I have very long hair but that wouldn’t stop me having the treatment, naturally. I would love to know how you get on. Thank you so much for getting back to me. Gail

Thank you Mike, that’s good to hear. I’ve built up such a nightmare and read some awful things about being taken to nearly the point of no return that anything is an improvement. Gail

Hi Gail….. in some way your are correct when you say that ‘you are taken to nearly the point of no return’…… as at the point of transplant you have no immune system and your bone marrow is basically doing nothing……. so the slightest infection can turn nasty but this is why you are in a very controlled ward….. my SCT unit had air lock doors as you came in to change the air reducing the risk of infections….. all visitors had their temperature checked etc……

Bit actually there is no real difference when you go through treatments that also reduce the immune system and most people don’t actually take the correct care at home resulting in hospital stays because of things like Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Sepsis (I had them all).

The other 5% that had problems are just unlucky or went into the SCT process with ‘other’ health conditions making complications more normal….. I will also say the the Auto  (self) SCT tends to have much less issues than in an Allo (donor) SCT (as I had) as in an Auto your body recognises the Stem Cells as friends…… but in an Allo your body sees the Stem Cells as an attack on the body so try’s to kill them off.

But look at me…,. 8 years out from my second Allo SCT, turned 68 last week and living a great life.

Hi Gail

ill let you know how I get on! 
But you need to talk to the consultant - I suspect they will need chemo before getting to SCT . As I said the ‘standard’ chemo (velcade) really wasn’t too bad for me and I didn’t loose any hair or feel too ill: I was just very tired. But we’re all different! 

And business colleague who went through chemo and SCT a few years ago managed to keep running his business right through the whole process! 

Nick

Mike, 

you’re absolutely right about the immune system being desperately low through chemo. My neutrophils have regularly dropped below 1 over the last 6 months and they were only 0.2 when I started stem cell harvesting. A few times I’ve needed GCSF injections to get my neutrophils up.
I’m in a really lucky position of being retired and living with just my wife. We’ve been diligent about not mixing with  family & friends in crowded places and only outdoors since I’ve been on chemo. I haven’t attended family weddings etc and I haven’t been into pubs and restaurants… it’s even got me out of a lot of supermarket shopping! But I’ve managed to avoid any nasty infections and viruses completely for 6 months - so far! 

ok, not everyone is in my position to avoid so much contact but I hope it shows that it is possible and it’s why I’m positive going into my SCT

actually, thinking about it, for me the ‘social isolation’ has almost been the hardest bit. 

Nick

I was basically the same (also retired) leading up to SCT although we did get out from time to time at 'safe' places to eat and we did have visits from the granddaughters but we were just careful.... good handwashing, no one with runny noses etc and windows open.

As you have to allow your baby immune system to grow there is a need to be very careful post SCT.... as I had done this twice we found the covid lockdown to be ok as we had basically done it twice.....including wearing masks in hospital before it was a thing.

I had no infections during both my SCTs........ my infections kicked in 11 months after my second SCT.