Allo stem cell transplant

Hi guys

I hope you are okay. I haven't been.on in a while. I had my allo in August 2020. Was in.for almost 6 weeks and had a week in intensive care. Fatigue is main issue now. I had to use wheelchair for first few hospital visits which was twice a week, and only recently.gone down to once a week. I had.my first pet which showed up something in 2 places. They took ultrasound and 5 extensive biopsy samples and fortunately there was no lymphoma.

It's been a rollercoaster the last few weeks.  I went for heart.mri  few weeks ago as been suffering with.breathlessness since I had my transplant. Also been referred to lung specialist

I found things have improved a bit and now able to walk in hospital last couple of weeks. I've come off fully of immumospressant 2 weeks ago. 

My blood results are all good so far. I've been 100,% donor in whole blood and neutrafils. They not been able to measure t cells which they said is common while.on immumosuppresants 

For those who had an allo when did you first see your tcell donor % from chimerism test? Has anyone had DLI top up if mixed chimerism and doing well?

My consultant said it can take a while to show t cells. Mine has been immeasurable both times whilst on immumosuppressants. 

Thanks

Alice x

Also forgot to mention I'm now going in every 2 weeks x

Hi Alice,

sounds like you’re doing well? Coming off immunosuppressant meds is a milestone and you may well find energy levels improve accordingly. An allo is bigger than a major operation, so convalescence is really needed. But it sounds as if you’re doing all the right things?

About chimerism, I gather some continue well even on mixed chimerism, daughter was 100% donor on her first test and it never varied, but I do wonder with her poor immune levels now, quite what that meant.

Exercise like walking is a really great tool in the early days, and fresh air if you can get that safely, adds to well-being feelings. 

I suspect you’re one of this groups pioneers in CAR-T so any info you give here will surely help others coming through. 

Big hugs xxx

Hi Moomy

Thank you I'm doing okay. The only times I've been out.is for hospital visits. It can be quite hard knowing how fit I was before and bring very limited now I know it will get better.over time. I've not been able to do yoga so have a exercise pedal.thing which.i try to.use most days and last couple.of weeks walked round the hospital without a wheelchair.  

I met another girl who had stemcell and she said at six months she felt a lot better so maybe I'm halfway there. I'm  just past 90 days. 

Do you or anyone know when.your hair on your head starts to grow back? I was fortunate to keep my brows and eyelashes during.the allo.

Thanks 

Alice x

Hi Alice,

daughters hair grew back fast after her auto but a lot slower after allo. At 10 months she had a very short pixie style. 
glad you kept brows and lashes. 
Hugs xxx

Thanks Moomy 

I hope you and your daughter are doing well

 I had my chimerism results back im 98% in t cells after 2 weeks off of immumosupressants 100% in other 2. 

My consultant said they count 95% plus as whole donor.

Hair starting to grow a little..I'm day 103

Take care

Alice x

Alice, that’s great news! And hair growth too, wow! Daughters was much slower to grow after her allo than her auto, but it did grow steadily. I’ve a photo somewhere of her with the singer Seal comparing iPhone data, must be about 11 months post transplant and she has a short pixie style. 

Hugs xxx

This is very good news Alice and a great foundation to go into this very odd Christmas time - have as good a celebration as you can.

Hi Alice,

I just thought I’d let you know that it does get better!

Im 12yrs post Allo SCT. Life’s very good .

We are all very different, & the real deal is to listen to your team & follow their instructions to the t. 

Recovery is baby steps, one step at a time. Put the work in now in the early days.

I was lucky & by just over 2 years was allowed to fly to Portugal for a week. Team told me to expect to catch a cold from the EasyJet light aircon - I didn’t!

6 months later I was on a flight from Gatwick to Barbados to board a cruise ship for a fortnight. UK food hygiene standards abroad. No food ashore & no ice in my drinks. Had to drink cold bottled beer.

Since then I have travelled all over the world on numerous cruise ships & spent a week with my daughter & her partners parents in Corfu.

So don’t despair, it is tough but normal becomes normal, stamina levels return.

Life’s good, despite lockdown.

Best of luck

 Christine