Last reply 3 years ago
Anyone else done or undergoing stem cell

Hi All,

I’m really excited to be undergoing assessment for stem cell trials in the UK, my MS is very active at the moment but hasn’t done too much damage, it doesn’t look like the trial has be running for hat long but just wondered if anyone here has gone through the treatment or planning too, would be really good to hear from you ?

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3 years ago

@loulou2002 , you want to compare notes with @brokendancer , whose also been lined up for a stem cell trial. 😉

3 years ago

Hi @loulou2002
Yes, I’ve had the bone marrow aspiration for the STREAMS trial, just waiting for growth so it’s all with the lab now 🙂 Timing was perfect for me as between contracts workwise.
There was a lady mentioned it on facebook but I couldn’t find her afterwards, way too many posts on a popular group. Was that you? And yes seems to be the major one as I got the call as I had a couple of active lesions 😉
Sonia x

3 years ago

Ah great to hear from someone who has had this! i think the ladies name might have been Holly and she was interviewed on this morning. apparantly if i get picked for the stem cell ( rather than Tysabri) i can request that i talk to her about the procedure. So far i’ve been given all the information on the scary stuff so it’s great to see you being postitve about fitting it in with your work, i’ve been off work for three months recovering so a bit fed up now and want a bit of normality back (as normal as it can get!) how are you feeling about the transplant?, i hope it goes well for you 🙂

3 years ago

No, it’s not the same as that, I believe the girl on TV had HSCT? There’s still some risks associated with the chemo etc. but I guess they’ve all been explained to you.
I’m on the STREAMS trial, it’s a double blind trial so there’s not a transplant as such – I’ll have 2 transfusions 6 month apart, one real and one sham.
Sonia x

3 years ago

thank you for this link Shifters 🙂

The patient info sheet is specific to your study but has a LOT of helpful in it for others too.

Is the difference in this study from ‘normal HSCT’ that your immune systems are not suppressed via chemo first before the stem cells are dripped back to you? Will be interesting to see if it provides improvement. Crossing fingers!

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