@DominicS

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DominicS

I'm off to see the HSCT wizard(s)...

Well, wizards of a sort. It is an open day all about HSCT (stem cells) in London tomorrow. Ought to be very interesting. Really looking forward to it.

rea

@rea

Good stuff @dominics, hope it answers all your questions.

DominicS

@DominicS

After yesterday I am going to scrape the money together to book a private appt with a stem cell proponent in London and ask if they can make it work for me on the NHS. If not the NHS then I will beg, borrow or steal the money! The thought of stopping this bastard disease in its tracks excites me. I want my MS to be a memory, just like breaking a bone. There will be left over effects but they will be static and I can work around them.

laurianne25

@laurianne25

Good luck, I hope it answers all your questions!

Highlander

@Highlander

@dominics Just wondering as usual..... Even with HSCT if you have things like inoperable and legs at the moment your gonna be still stuck with it..... but it shouldn't get much worse else where? Before I start selling major organs off to finance it? Ahh but wait I'm not allowed to do that.... guess I'll have to prostititute my lowly intelligence.... not putting much faith in that if I'm honest 😃

Bernadette

@Bernadette

Hi @dominics do they have an upper age limit? not planning to try it myself but just interested, who was running the meeting btw? thanks

DominicS

@DominicS

I am aware of a 65y old female who has recently had it on the NHS. Rather than be fixated on a number they are concerned with how you have aged. A 40 y old can present as physically older than a 65y old.

RachelTeasdale

@RachelTeasdale

Hi @dominics any update on this? How did you find about the open day? I’m one year into Lemtrada with round 2 due in September. I’ve just had a full brain and spine MRI as there is a concern Lemtrada isn’t working as I’ve had significant degeneration in the past year. Options are Ocrevus or Consultant is willing to entertain the idea of HSCT, his words not mine. My dad has ppMS, diagnosed 3 years ago and extremely aggressive. We’re under the same London consultant so keen to hear your thoughts. Rach

DominicS

@DominicS

@rachelteasdale I found out about this by Googling HSCT at London Bridge. My thoughts are to go and see one of the two neurologists listed privately (in the interests of time) and ask them if one other or both of you can have it on the NHS. They are NHS consultants who do private work too, not just private medics. Money doesn't buy you a better chance, merely faster access. Ben Turner is £280 for a consult and he'll need either the last 5y MRI or as many as you have. If there is not an up to date MRI then you'll have to get 9ne through the NHS - with the inevitable wait - or for some more serious £ you can get a private one. For that expect £1-1.5k. Have you seen the article from yesterday about HSCT on the Barts blog?

RachelTeasdale

@RachelTeasdale

OMG @dominics thanks for all this. I’ve read the article and chatted with my health insurance. They’re willing to cover a consultation and private MRI and will consider the doctor’s recommendation. They did point out that HSCT is not an approved treatment option but then said ‘someone has to be first and we’ll consider what the consultant recommends’. What a totally unexpected outcome. Now to get an appt with Ben Turner :) wish me luck

DominicS

@DominicS

Ben Turner is the best bet. They are charging insurers now at London Bridge as they see this as more economical than having to support a client through the course of MS. There is solid research evidence for it nowadays.

DominicS

@DominicS

Appts with Turner are usually within a week to 10 days. His private secretary details are there. Any issues then PM me.

RachelTeasdale

@RachelTeasdale

Thank you so so much! Will update once I know more.

RachelTeasdale

@RachelTeasdale

Hi @dominics subject access reviews done for MRIs and have a number of them received. Have an appt with Ben Turner later in August and looking forward to finding out more. 🤞 thanks again for your inspiration

DominicS

@DominicS

@rachelteasdale My pleasure. I have just returned from Canada. I need to do an up to date MRI in the next week or two (a benefit in doing even the simplest non-drug study; they always want MRI!). Once I have that and the last 5y, which my nurse is kindly collating, then I am off to see Ben Turner as well. I think I'll be behind you. PM me and let me know how it goes. Thank you.

RachelTeasdale

@RachelTeasdale

@domincs hello, how’s your journey gone? I had my appt with Ben Turner and he agreed I’d be a good candidate for HSCT. Also my own neuro agreed but both insisted I finish my Lemtrada treatment. Essentially the outcome of both conversations were, any future relapse which show on MRI and you’ll be approved for HSCT. If no positive MRI but significant symptoms, then we’d be happy to consider as a private patient. Consultants both agreed that someone has to be the first private (insurance) patient and it’s only a matter of time. Hope you’ve found a way forward and thank you for sharing this information. Hoping I’ll skip off into the sunset with a successful second round of Lemtrada (completed Sept 19)

ItsMewithMS

@ItsMewithMS

How exciting! make sure you report out to the group! good luck!

UpsandDowns

@UpsandDowns

thanks for the infor dominics.. do you know how much does the procedure cost all? What is the success rate? Does NHS subsidize it at all? I am planning to rob HSBC...

Pinkyx

@Pinkyx

Does anyone know how much HSCT costs in london (to pay for it, not NHS) as I doubt I could get it on NHS, because I have no active lesions right now. Thanks so much .

watsoncraig

@watsoncraig

@dominics Hi, hope you enjoyed your time across the sea? Do you have to come off Ocrevus before HSCT? I have a teleconference with my MS nurse tomorrow and plan to talk about it.

DominicS

@DominicS

@watsoncraig - bit puzzled as it is a post from 2019. I am swapping from ocrelizumab pretty soon as I declined my infusion due about now. Getting HSCT at the moment is v hard due the extra risks with some virus or other that is doing the rounds ;) I am choosing to swap from Oc as it fully interferes with the ability to make an immune response to vaccination. 5h more driving to the Cairngorms today to go on a few multi-day walks. Will bag Munro’s so out of touch for a week. See theMSguide.com

KateB

@KateB

@DominicS, what have you decided to take instead? I have had the same thought , my next infusion due end of Aug, and I am at least going to delay it until Sept as I live in Devon where we are totally over run with visitors. Also our teenagers going to festivals etc all through August. I Havn't even bothered with the vaccine, don't see the point right now. I was wondering whether to try tysabri instead

JayJay10

@JayJay10

Hey Dominic, you have produced the first smile of the day for me. I am always overly excited when it comes to stem cell treatment. Breakthroughs along with optimism are always around the corner with this kind of research and results. I hope everything goes well for you mate.