Last reply 3 years ago
PPMS => RRMS & stemcell trial

Hello, I just joined and I’m literally 3 days away from my MS 2nd Birthday and everything has changed!
To cut a long story, I was diagnosed with PPMS, turns out I do have RRMS and I’m now involved in a stemcell trial. I’m actually waiting for my stemcells to grow now so I’m nervous, I think they need two million before we can proceed with the double blind bit.
Anyway, please have a look at my blog if you have a chance
http://brokendancer.over-blog.com/
Sonia x

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krisp
3 years ago

Hi Sonia
Recognise you from mssociety
What stem cell trial is this your in? Is it the mesenchymal trial?


brokendancer
3 years ago

Yes it is Kris, by some miracle I met all the criteria and just have to hope my cells grow well over the next few weeks.
I’d already sussed I couldn’t afford Russia and the risk is pretty scary with all that chemo, at least there’s not the same level of risk.
Sonia x


krisp
3 years ago

I spoke to Mark Freedman the Dr from America who raves about hsct etc and he thinks Mesenchymal sells are the way forward.
He believes they promote a immunomodulate effect aswell as repairing the damage as they can become any cell
Is it three infusions you get? It’s a great trial to get on by all accounts Sonia !


brokendancer
3 years ago

Hi, that’s interesting 🙂

No, it’s only 2 infusions, 6 months apart, 1 real & 1 duff and 12 months of watching overall – even the doctors won’t know which one’s which. So I’m currently at about -4 weeks I think. It was actually lucky, I’m between contracts so I was able to attend the hospital a couple of times with relative ease. Now just crossing everything, that they grow 😉

I’ve also given blood twice now for another trial. I’m not sure of the exact details on that (I have a LOT of paperwork!) but they wanted virgin MS blood i.e. no DMDs

Sonia x


krisp
3 years ago

thats about as cutting edge as it gets right now so your doing really well to be on it!
There’s about 4/5 trials going on into mesenchymal stem cells worldwide from Canada to UK to Italy
Not to mention the private clinics doing the treatment
It’s got to look good!


brokendancer
3 years ago

Thank you Kris,
you’re very kind taking the time to talk to me about it when I know you’re having such a really tough time right now. Yes, I even looked at HSCT (couldn’t afford it anyway and my Mum would have had a break-down) and I was scared of the risk.
Fingers crossed my cells grow and you get some answers 😉
Sonia x


krisp
3 years ago

Hey Sonia
No problem I know from seeing on the other forum you’ve had you fair bit of crap to deal with too
And we’re all facing uncertainty do anything we can do to help is good I guess
And yeah your cells will be fine your in good hands with the people who are doing the trial
Plus either way it should open doors to other avenues for you too


northernlass
3 years ago

Hi @brokendancer I just read your blog… very best of luck and I really hope the outcome is as you would hope.. out of curiosity how do you get onto a trail and what was their criteria..? Today is my first year after DX.. so your post has given me hope as I too am not on any DMD’s and I my actual MS is uncertain for the moment.. am I RRMS or maybe PPMS .. I go and see the Neuro in June.. maybe get some answers then 😀 Best wishes


brokendancer
3 years ago

Thank you, I got on it thru a weird chain of events really, if I’m perfectly honest.
I fitted the toughest part of the eligibility criteria, as I have active lesions.
The MRI was after being referred to the doctor in London after expressing my thoughts on any trials. Well that and 2 lots of industrial strength steroids fixing things I thought were not MS and was seeing a different consultant about.
London Neuro agreed action was needed, outlined three DMDs and sent me for an MRI. I got the call from the other doctor just 2 days before I visited the Neuro, when I saw him he knew about it, as his opinion & permission had already been sought. The details of the actual requirements are all on the St Barts Blog. It’s called the STREAMS trial, going from memo it means Stemcell for rapidly evolving MS 🙂
I only know that they were increasing the number of participants by just 5 people and it’s quite tough eligibility, I don’t know how many people are already in the frame.
Sonia x


brianp
3 years ago

Thank you, brokendancer, for volunteering for research that may benefit all of us.

You, my dear, are far from broken. On the contrary, based on your courage, I see elegance of spirit rather than brokeness of dance. The only thing that’s likely to be “broken” here is this damnable MS bully by warriors like you who will eventually wrestle him to the mat.


brokendancer
3 years ago

@northernlass sorry I had to rush earlier, I meant to say good luck with your diagnosis! 🙂

@brianp Thank you so much, my friend Kat used to say “You are strong like bull” when we were learning pole dance together 🙂 so I’ll happily take the warrior as a compliment 😉
Sonia x


cclaire
3 years ago

You need to buy yourself a nice birthday present to pat yourself on the back for managing another year. My ms birthday is in between my real birthdays – we need to be kind to ourselves!


brokendancer
3 years ago

So you have 2 anyway…. I only get 1 😉 x


cclaire
3 years ago

I meant my actual birthday is at Christmas, so I get all of my presents at once. My ms birthday is in July, so I treat myself in the middle of the year!


krisp
3 years ago

Hi Sonia
I spoke to Someone earlier regarding your trial and it looks like a great set up! They are trying to play it down a bit but it looks really good


brokendancer
3 years ago

Kris,
when I had my 3 hour meeting/assessment for the trial, when I got in the car, it took me quite a while to get my head straight enough to say to my husband – “I think she’s really excited, she shook my hand twice!” 😉
Surreal for sure but the Imperial College is amazing, the set up there is very professional, I get a wrist-band on entry and was even able to order our hot lunch when we were there all day. 🙂
Sonia x


krisp
3 years ago

Hi Sonia
There’s a lot of money gone into it in fairness and some very very good neuros and professors involved
Plus if you look at tisch center for Ms in America theyve published early results of a similar trial, there’s no guarantees but that one looked good.
Was it Dr Ali you spoke to?


brokendancer
3 years ago

Yes Kris, Dr Ali gave me a completely pain-free LP 🙂 I swerved that at diagnosis so was a bit nervy agreeing to 3, she said due to my petite build she wouldn’t anticipate any issues – she was right.
You are an excellent researcher, I’ll have a look at tisch later, thank you 🙂
Sonia x


krisp
3 years ago

I won’t lie the research is a slightly selfish reason lol
Yeah she sounds like a very good doctor and also someone who’s extremely into what she’s doing which is evidently a very good thing.
The tisch thing should make for interesting reading, there’s orher studies done by Dr Freedman in Ottawa, I think Dr Slavin who treated a young golfer called Louise Zystra too, she had some success with it from what I saw


mary-annpearson
3 years ago

This is encouraging to hear all these comments. I was diagnosed with RRMs but it is definitely PPMS all the best in the growth of your cells. Have you been given something to stimulate the growth


brokendancer
3 years ago

Hi Mary-ann

Thank you, they took stem-cells from my hip bone so it’s all going on in the laboratory now. I just know they had one person’s cells didn’t grow enough in the laboratory, so it can happen! 😉

The good news is that they’re looking at MSCs for all types of MS 🙂

Sonia x

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