SCT Success Stories

Sounds great, Mark, you seem to be doing really well.

Yes, skin GvHD is common but easily controlled by creams if its mild. But yes, EBV really can cause havoc as we've heard, so keeping an eye on levels and hoping the team act swiftly is right. 

Hugs xxx

Hi Mark, 

Good to hear you’re doing ok. I get mild GvHD of the skin and it’s soon cleared up with some steroid cream. 
The EBV is something they will need to keep checking as mine came back last year causing me to become very ill. I believe they treat it when it’s above 30,000 so hopefully it won’t get to this level. I required 6 cycles of Rituximab to get mine down and thankfully I’ve remained negative since. 
Regards

Mark

Bump for those looking down the Stem Cell Transplant Tunnel. 

Bump for those going through SCT

Good morning all. 

Little update here ,currently nearly 17 months post transplant. ,Last biopsy showed 100% chimerism and no sign of disease. Generally feeling good most of the time ,dare I say it almost normal.A few skin issues with fungal rashes and seborrheic dermatitis but otherwise no issues.Blood tests only once a month as they are keeping an eye on EBV virus which is still slighty visible in results. 

.Feeling very grateful as I know many others are having a hard time.

Mark

Great news Mark - onwards and upwards I say

Good news, Mark, great time hear it!

Our daughter continues self medicating with I/gs, she’s not keen but it keeps her safely at home! She’s getting about even though shielding, they investigate  camping sites away from it all, thank goodness for campervans! And of course the pup enjoys relative freedom, in fact she says he sulks when they return home! 

Hugs xxx

I just had a memory pop up; 

its 9 years today that daughter was discharged from The Christie SCT Unit after her Allo. Yes she was weak, yes she had a chemists shop load of meds to take, but she got through and is here as a result (though shielding still!) 

hugs xxx

Ah Moomy that wonderful news and very encouraging, I’m now just entering my fourth year of remission after auto SCT, I am now on Corfu enjoying sun, golf and life I still have a numb toe and fizzy finger ends but embracing life here and shielding and feeling safe on this small island. I’m staying here until I feel it’s safe to return to the U.K. to see my family I am thankful for face time as I can speak to them.
I enjoyed a concert in the grounds of Mon Repos a few weeks ago listening to the Corfu old Philharmonic young people playing Songs by Queen and others It was a magical evening and enjoyed watching it again on YouTube 

Sue 

Sue that sounds great!

daughter has had a week of doing two voiceover jobs per day, people have realised she has her own home recording studio and are using her! She just did one for Gas Safety which was rather well paid, will be on both TV and radio! 

She’s keeping well and just hoping for the vaccinations to get fully approved and rolled out, has been shielding since early March now and is a bit cheesed off with it, but is patiently determined to stay safe!

Hugs xxx