My partner is post stem cell transplant for Melodysplasia currently in hospital for fourth week and I am worried, confused and little tired.

Hi ,

Sadly the worry takes a VERY long time to leave you! (yes I still worry about our lass, and her allo was in 2011, but thats what Mums do I guess) She too is now on the home treatment for low immunity at last, did her first solo treatment last Thursday. Hers is weekly, but differing amounts every week, higher in alternate weeks. Its taken a long time to get to this, they did try one complete winter without treatment but she was just so unwell and had to cancel such a lot of work (she's freelance, so no work, no money) 

I really hope he does ok, and that the results are the labs mistakes. Daughter too had rising EBV post allo and was treated very speedily with Rituximab, it sorted it all out swiftly. Might the low count just be 'one of those things'?

Hugs xxx

Hi Paul1969

Thank you for your story. I remember us  going to the pub after diagnosis reading MDS books.  Feel like we come long way it has been a year since diagnosis but still many things are not so clear and new to me. He is 7-8 months post transplant now and EBV is undetectable. Before retuximab his neutrophils were 3-4 regularly so falling down they scared us. But I am just learning now that there is so much they can do to manipulate the counts and that it’s only 7-8 months and it’s normal not to be good yet.at first I would be scared that transplant is not working when counts would change so now at least I am not so panicky... Biopsy tommorrow At 9.30 they will allow me to come luckily as he gets sedated there is nice outdoor area in that part of hospital at least I guess.. In last test neutrophils gone up to 1.8 now that I checked as he didn’t have retuximab for couple of weeks. I will try to relax some how this really stressed me out like coming back to the beginning again when I heard about DLI. Anyway thanks again and I will post the outcomes here. 

Hi moomy

I am his girlfriend but unfortunately in the last year it feels like I am Mom and Carer... I don’t like to be worrying his mother as she seems to worry more than me. I told her EBV was undetectable but not going to mention biopsy or DLI scare until it’s confirmed.. we had Serious lab mistakes They told us chimerism is 2%  and I’ll remember consultant running up to the room to tell us it’s 98-99 not 2. Last tests said chimerism 99-98 and T cells is 18% but they are suspecting mistake again... anyway they still decided to do bone marrow biopsy as they haven’t done one yet post transplant and waiting for repeat Tcell. Let’s see what’s next. 

Thank you for your reply and hugs to you too ️

Also only now realised how to tag people’s name in

Hi Thehighlander and others 

He had biopsy yesterday so let’s hope to see full result. I am still so very confused... Chimerism in blood or something is 99% and the counts are all good even neutrophils are now 4.9 but there is possibility that the other chimerism what ever it is.. Is only 18% and was 76% they think it might be mistake and we are hoping it’s 76% but if it is 18% I can’t put my head around it... Does it mean transplant is not working but how are bloods going up.. I can’t seem continue living relaxed even tho they said not to worry. We have video chat with friends today it’s Friday he would like to relax and have couple of drinks and I feel nervous about even him having beer if it’s something serious..
I am so confused.

Hi Vikki2

I think relaxing with a couple of beers sounds perfect to me, it’s what I’m doing this afternoon whilst enjoying the sun in the back garden. 
I had an Allo last June and my EBV came back in Sept resulting in glandular fever. It made me extremely ill and I spent a number of weeks in hospital whilst the Rituximab finally got on top of it. My consultant said it can take healthy people months to get over it so after a transplant with little or no immune system,  it’s bound to have an effect. 
Hopefully the biopsy will put your mind at rest. 
Enjoy the beers. 
Regards

Mark

For some folks the Chimerism is not a problem but for others like myself my Chimerism was just around 50% across both lineages for a good 23 months post SCT.

Until you get the full results it’s all speculation.

My main blood results were all over the place during these early months, up and down, then up and down again badly so had to have 3months blood transfusions to get me through but it came ok.

Is the Transplant not working?...... better thinking from the point of view that the his all new baby immune system is trying to find its feet just like a new born baby and this will take some time to get every different type of cell that is required into a place that his results will show a marked improvement. 

It truly is a rollercoaster ride like no other.

((hugs))

Hi markyflem

Thank you for your reply had EBV levels raised until a month ago finally undetectable. I assume we’ll wait now few weeks until biopsy results are in because we had way too many mix ups with bloods. And I think I’ll try to get that Friday feeling and have couple of drinks with friends.

Have a lovely Friday 

Vikki 

Hi Thehighlander

We had so many inaccurate results that probably I’ll only believe what they say after biopsy. Most likely another few weeks time of wait but I’ll try to relax and forget about it. 

Thank you for speedy reply :) 

Enjoy Friday 

Vikki 

Hey there been a while! Everything was steady up until Monday :( Back in hospital and it’s really hard to cope not being able to visit. 

Sorry to hear he is back in hospital, this for me was rather normal for a few years post SCT....... the added complications of the COVID restrictions makes this just that more harder....let’s look for him to be out soon ((hugs))