Transplant not straightforward

Hi and welcome to our corner of the Community but always sorry to see folks finding us.

I have been through two Allo SCTs with velds from my brother - I was never clear enough for cells to be harvested. 

Over the years I have been helping on the Community I have yet to meet with someone who has been through an Auto then two Allo SCTs but who knows?

I do wander if his team are looking to do a DLI (Donor Lymphocyte Infusion) to give his ‘new him’ a help along the road. I had DLI following both my Allo’s as my graft was not taking hold.

((hugs))

Hi Mike

Thank you for your reply. I now know that you are right and it’s a top up/ DLI that they are looking at for my husband. Thankfully we’ve heard that the donor is willing to donate again and has their medical today. 

We had a very stressful few days as my husband’s liver wasn’t coping with the treatment and he had high bilirubin levels- eyeballs literally the colour of egg yolks . He had to have a pressure test on his liver that involved going in via his jugular vein. 

Anyway thank goodness, things are improving at the moment after the dr replaced cyclosporine with MMF. 

Best wishes

This is why I often call SCT a Magical Mystery Tour..... The magic is what SCT can do, the mystery tour is the rollercoaster part of the journey.

As I said, I had a number of DLIs to kick start my all new cells, the most I got at any time was 30-40mgs but this was enough to get things going..... there is a high possibility that this may being on some GvHD but my team were actually happy to see some GvHD as this was a good sign that things were happening.

A lot of the medical issues are temporary, found myself in ICU a few times as my heart went all over the place...... but coming up to 4 years post my second SCT and doing good so hang on and see this all as part of the greater good cc 

Cyclosporine is horrible. I’m still on it and it makes me feel sick constantly even with anti-sickness and the constant shaking is very frustrating. Hopefully changing will help him improve. 

Regards

Mark

196 days on Cyclosporine and every night is ingrained in my memory when I tried every thing under the sun to make this tolerable..... with little success....... it all passes eventually.

I hope you didn’t spend too long under the sun Mike it’s got a big warning regarding too much exposure to the sun!! When you read the possible list of side effects I think it pretty much covers every ailment know to modern medicine. The consultant told me most people struggle with it and they offered to switch me because the shaking is annoying me but hopefully they can start to get me off it soon so I said I would just put up with it. The problem is the anti-nausea tablets that work the best are the ones which make me sleepy so I try and avoid these during the day. I’m also getting headaches lately which I will mention at my next clinic on Wednesday but these seem to have got worse since they increased my Cyclosporine level from 100 to 150 a couple of weeks ago.  What side effects do you suffer the worst from? 

Regards

Mark

The two main side effects were wrenching when I put the demon capsules near my mouth, I was never sick but it was hard work every night to get them down, it actually became a mental challenge.

The other issue was the amount I was sleeping as I was on a lot of anti - sickness meds.