Car-t relapse

Hi John

At the moment I'm focusing at getting to remission first. Its all a bit of a shock it coming back despite car-t. Their looking to put me on bi antibody clinical trial which has had some good success 

Do you know of any maintenance treatment or anyone else on here to help past a allo ( using donor) stem cell transplant?

Many thanks

Alice x

Hi had a look back at some of the reports and reviews and it would seem they were all looking at maintenance post auto not allo and allo is still seen as a cure. The newer papers seem to be looking at PD1 targeted treatments which Moomy and I referenced. 

Totally get the focus - a step at a time, keep us updated once they have confirmed the next steps.

John 

Hi

I asked about the poluzumab and bene one and was told It's licensed in USA but not here and they contacted the manufacturer and said it's only in use as last resort. 

I will need to get to remission or almost remission to have an allo stemcell. My doctor offered me clinical trial targeting cd20 and cd3 t cells to boost your immune response. They said its had promising results so far. I've passed the tests hopefully start soon.

It's strange cause the rash lump I have on my arm was going down even before I took steroids which makes me think car-t cells may still be working but slowly. Doctors can't confirm though.

I'm feeling fit and healthy and determined to fight this off once and for all.

Alice x

Hi Alice,

it’s great that you’re feeling well, really hope those T cells are still working!

Hugs xxx

Hi Alice, progress being made.

Having lived many years with a skin T-Cell Lymphoma I can ‘accept’ that your treated T-Cells are working as often the skin can be the first signs that the body’s T-Cells are not functioning well.

Keeoung everything crossed fir you to get into that place to move this forward x 

Hi 

Thanks everyone for your replies. I had my screening appointment this week. What a long day including MRI stopped off for maccy d's on way home.

I've done so many tests had a pet lumber puncture and 2 mris in last couple of weeks as well as taking 15 bottles of blood.

All being well I should start on Monday. It's a subtaneous injection but they want me to stay in till Friday to monitor me for first three weeks. First week low dose then following medium.then high dose. I'm planning to spend as much time as I can at 'Maggie's' practising meditation and join in yoga class. I find yoga is really helping with the anxiety. 

Alice x

Hi Alice,

I hope all goes really well, and yes, yoga is really good, i agree!

Hugs xxx

You know I have never done any Yoga. I think it’s the thought of putting my feet behind my head puts me off  ........ enjoy.

Oh, whooops, is that why I’ve been going so wrong these last few years?!?!? I still can’t do ‘that’ move,

hugs xxx

Thank you

Never done that move I'm a beginner to yoga

X