Post stem cell transplant - what does good look like?

Hi again and first congratulations to you both for getting to this point. September was only a few months back so very early in the post SCT recovery.

It is all about taking each day as it comes, the hard days are temporary and it’s about keeping your eye on the greater good in all this.

You may find some of our ongoing threads helpful: Life after a SCT - A Survivor's Guide where we have tried to collect or post treatment experiences.

Rather than me typing out my long story hit my community name Thehighlander to see my story.

Things like holidays do come back but take a big breath. This is a massive hit his body has taken so recovery can take time and much longer then you would hope or look for.

Once you have had a look though these posts do come back with any questions as there will be someone that can help out.

Thanks for your reply. I am looking at the links provided

The stage your husband is at is tough, it’s still early days so expect a strange, sort of ‘in limbo’ time for a bit. EBV levels can indeed rise post transplant and most units will treat this quickly with Rituximab once it gets to a certain level. 

But life should gradually get to a better stage and you both need to hope that this improves. It took our daughter quite a few months to return to a reasonable quality of life after her allo SCT, she began back to work (full practise - she’s a brass musician) 8-9 months afterwards and then she got back to touring at around 10 months but her energy levels were still rather down. Again like Mike you can see more on my profile. 

Sending hugs xxx

Hi 

it takes some time after the stem cells to get back to a normal life and it can still have its ups and downs for a while after... but that doesn’t mean you can’t start to plan things and gradually get travelling again. Take advice from your team but be sure to ask the questions of can you book trips. We’ve were lucky and had holidays after about 3 months post SCT (no COVID-19 back in 2013 of course). In under a year I travelled to Australia, was working full time and was enjoying life. Yes there were a few hiccups but nothing that couldn’t be overcome.

I too had EBV about 4-5 months post transplant and a few doses of rituximab soon sorted it out. You can read my profile HERE which tells you about my journey since 2012.

Newshooz

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

Hi - there’s some great people on here for advice.

I’m just over 2 years post SCT and it’s a journey that does get easier but some unexpected things do appear. I too got EBV and was treated with rituximab, unfortunately the treatment failed to prevent me getting PTLD and ending up in hospital and extremely unwell. The team at the QE in Birmingham were brilliant and organised T-Cell therapy that was specific for the PTLD. I have as extremely lucky to get the treatment.

I’ve recently had surgery to put right one of the complications I had during chemo and feel as close to how I was pre AML. My wife has done a brilliant job at keeping me positive, pushing me to eat, to get up and to be positive.

At the time of my transplant (just prior to, actually) I had 20q deletion MDS at 23% of my marrow. The transplant hematologist winced slightly as he mentioned that. Nevertheless, I was at 100% chimerism before a month's time, but showed minimum residual disease (2.6%) for a few marrow aspirations after that. It was not until the two year point that my marrow was clear of MDS and it has now been three year's time since that point. So, five years on, no sign of any malignancy. PTLD seems always to be threatening, but it is benign by definition, although still another potential bother. That is "IF" it occurs. Therefore, we are well advised to face each morning on a note of gratitude. Maybe make each day  a "first date" with hubby and see how you go...?