Seeking positive SCT stories

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

Success Stories? there are lots and you can start by look at this ongoing discussion SCT Success Stories (LINK)  as there are lots been recorded in this discussion.

For me, my journey was rather different from yours but if you hit my community name Thehighlander you can have a look.

But long story short - Stem Cell Transplant has saved my life.

Late 2013 I was told I had a few years on my countdown clock and only SCT would do the job and I am still around doing great.

Yes, it was all hard work.

Yes, there were some challenging times.

Yes I was told to get all my affairs in order before going into SCT....... but it was all a means to an end.

Survival percentages are not what you focus on, you are a statistic of one and your journey is most important, not others.

What type of SCT are you having?......your own cells (Auto) or donor cells (Allo)?

Where are you having your SCT?

We are around to walk this with you and answer questions as best as we can.

Mike

Hi Lorelai44,

I am coming up for 5 years post SCT and whilst there were some tough moments, I’m doing really well now. I was a similar age to you when I did the transplants (36) and it was a daunting time, with lots of what ifs. But I’m doing well now and life is pretty much normal again, which is all I ever wanted. I am definitely with you re: not reading too much into any one person’s story, been there, done that, and it didn’t make me feel mentally well. You are an individual and have your own path to follow. Still, we can be here to help you along the way.

Here’s hoping it will all go really successfully.

Greg

Hi Lorelei,

our lass was about 27 when she had her auto SCT, and in her mid 30’s when she had the Allo SCT as nothing was working till a trial drug got her into remission. But she’s now 9 years post and doing as ok as possible, living and enjoying her life, even with a very low immune system.

but as has been said, you are a statistic of one, so your journey through this is specifically yours but your team will help you all they can, the teams are getting very good at it all now.

hugs xxx

Hi Lorelei

I had my transplant for AML May 2019 aged 62 . It was quite a tough journey but since around April I have been off all medications and feeling almost normal. I am back running and cycling and generally enjoying life. Hope all goes well for you x

Hi Lorelai44. Your post and story to diagnosis struck a chord with me - I too have MDS, was diagnosed at 41 (am now 47) (initially given AA but changed to hypoplastic MDS by King’s) and am likely to have my transplant in the next 6 months. I’m not a success story yet but certainly hope to be!

i just wanted to offer some encouragement and send you good vibes for your transplant. I have heard a number of really positive success stories for MDS/AA patients both in and outside this forum (I too was very hesitant to engage too much in forums) so do take heart. I completely understand your terror though! It’s not easy to keep it in check.

Where are you having the transplant done?

This seems to be a really supportive and helpful forum so hopefully it can help as you navigate this. You are not alone!

Wishing you courage, good luck, and virtual shoulder should you need it. I’ll be following any updates.

Big hugs and all the very best 

Kate

Lorelei,

SCT is tough, there’s no other way to put it. The more positive you are the 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. Rest when your body tells you it needs it.

But it does get better!

You wonder what ‘normal’ will be......well its normal. It just takes everyone different times to get there.

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 flight 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