10 months post Stem Cell Transplant

[KAS8]

It's been a long time since I last posted on here!

10 months ago I was lucky enough to receive donor cells from a 10/10 match. It's been a rollercoaster ride but looking back, I've been very lucky as it has been nowhere near as bad as I had read it could be.

Yes there have been some challenges, felt exhausted for many months initially but now I am feeling so much more myself.

Managed to pick up Epstein Barr Virus at the start of the year but the amazing team at the QE soon identified that and dealt with it. I've had 5 infections in 3 months but am now on an increased medication regime to ward these off.

I've joined a local gym to increase fitness and managed 5k in 40 minutes followed by 10k on the bike.

I will get my innoculations in September and then hope to find a new job, possibly part time, in a basic administration or customer services role. Nothing pressurised and no major responsibility - been there, done that and bear the battle scars!

For anyone out there facing a stem cell transplant, I wish you luck and if you want to chat, drop me a line.

Good health everyone 🤗

[Bell53]

It is wonderful to read your post.

I may need a transplant in the future and I have to admit it frightens me when I think about it

Thank you for your offer to chat as I will surely take you up on that

Sincerely best wishes for continued good health

Heather

[KAS8 in reply to Bell53]

Thanks Heather and good luck x

[Bell53 in reply to KAS8]

Hi KAS8

I gave your screen name to another member of this group who is seeking firsthand info on stem cell transplant. They are also tp53 and facing next line of treatment and very anxious

Their screen name is doremefasol

Thank you once again for making yourself available to help our fellow travelers on this particular journey

Warm regards

Heather

[KAS8 in reply to Bell53]

Hi Bell53

Thank you. I have just messaged chapter and verse.

Xx

[annmcgowan]

Great to hear you doing so well.

Good luck

Ann

[Time17]

So good to hear from someone who also had aggressive disease and has got through one of these transplants. I have heard so much bad news about how people have struggled during and after having a donor bone marrow transplant.

I am waiting on an allogeneic transplant. At this stage I have too much CLL in my body (bones, lymph nodes and some organs). The CLL is being slowly reduced by a Venetoclax and Obituzumab combination but my genetics show that I have aggressive disease mutations. My specialist believes it will quickly become resistant to these drugs as I am responding so slowly to this treatment. Sadly my CLL is now chemo/rituximab resistant-- 12 months ago it responded to both. I have already had an Auto stem cell transplant but that failed so now I am awaiting an unrelated bone marrow donor match.

I, like you, would have preferred to have gone down the CAR-T treatment road but have been told the therapy is not there yet and that I do not have time on my side. Therefore transplant is considered my only option.

It was good to read about your progress and I'm glad to hear you are traveling reasonably well post-transplant. I wish you well for a continued recovery.

[KAS8 in reply to Time17]

Thank you for your wishes. I was on Ibruitinin for 8 months which began to fail and then venetoclax for 4 months to get the CLL low enough for transplant.

I wish you the very best and always happy to chat.

[LovecuresCLL]

You rode 10 miles after that. That is an inspiration to us all. Keep us informed on these achievements. Please.

What are the symptoms of Epstein Bar virus? Is that like infectious mononucleosis? How do they treat it?

I get infections and I want to look out for it.

Best wishes to you

-LoveCures ❤️

[KAS8 in reply to LovecuresCLL]

For me it was picked up on a routine scan at 6 months out. The concern was I was relapsing but a biopsy showed no CLL. Further blood tests picked up EBV. No real symptoms to be honest but was treated with 4 x weekly rituximab if.

[Hidden]

was it a low intensity transplant or a regular one. although the word transplant is in it they are actually 2 different things Just wondering

[KAS8 in reply to Hidden]

it was reduced intensity without radiation. ATG was used in the prep which was pretty evil.

[Kokobean]

Such great news! Thanks for sharing.

[Mystic75]

Thank you 'A Better You" for your inspiring post - and for your generosity in offering to be a resource for others who may need it.

This is great news and I am so happy for you - I also find it comforting. The 'unknown' can be scary so it is always encouraging to know someone who has 'been there; done that'.

All the best!

D.

[KAS8 in reply to Mystic75]

Thank you x

[BettinaB]

I'd been wondering about you. It is great to hear you are doing so well and I wish you good health and great spirits always...

[DriedSeaweed]

Happy to hear when transplant a success!