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Selma Blair is doing HSCT for MS

(58 Posts)
YaddaYaddaHeyYeah Mon 17-Jun-19 18:30:24

Apparently Selma Blair is going to do HSCT at Northwestern under Dr Burt for her MS

MS = Multiple Sclerosis

HSCT = Hematopoietic stem cell transplantation

Basically MS is an auto immune problem. So what they do is give you 4 doses of chemo, just enough to kill your faulty immune system. Then they take your own stem cells (so there is no chance of rejection. They give you shots to accelerate the growth of them), and give them back to you so you grow a new MS free immune system.

I’m thrilled for her. I did the same 2.5 years ago and it was the best thing I’ve ever done.

As she is very famous and she’s openly doing it, it’s going to really highlight it and I’m really happy about that. I think more celebs have probably done it but they don’t talk about it.

I did it privately and it cost $50K. Most people fund raise if they can’t self fund. There's also a pay it forward attitude with the people that have done it. A lot of the time if someone has done the treatment and has fundraising money left over then they will pass it on to someone else that is doing it.

Some people get on trials. To get on a trial you usually have to have tried and failed 2 of the DMT drugs. I remember about 3 years ago going through the JACIE (Worldwide HSCT accredited facilities) list and emailing everyone. There were pages of it. Generally they treated cancer patients but because HSCT for MS was getting more press quite a few said they would be offering it to MS patients in the next few years.

It’s not a new treatment. I have met and spoken to doctors that have been doing it since the early 90’s, that keep in touch with their patients and those patients are still doing well.

It has an 80% success rate and 40% will see some improvement in their symptoms, but the aim is to stop progression.

Risks - You could be sick from the chemo. You only have 4 doses of low doses of chemo, just enough to kill the bad immune system, so it's a lot less than the average person has when undergoing cancer treatment.

The DMT's carry a lot of risks too. So it's about choice. For me personally, I was looking for a cure/a stop. So a DMT felt like putting a band aid on a gaping wound IYSWIM, so HSCT was the choice I made.

I started a thread earlier about this but mumsnet took it down because on one post I had put a link to a clinic where people could find out more information if they wanted to.

I have not included any links in this post as I don’t want it deleted again. I have tried to answer questions that other people asked on it though.

I really hope that Selma Blair is in the 80%. I wish her all the luck in the world.

Selma Blair is very open about MS and how it has affected her. She did an interview here

Strawberrypancakes Mon 17-Jun-19 18:39:26

Wow, I had no idea it was that affecting. That video is so moving.

Theimpossiblegirl Mon 17-Jun-19 18:41:08

Thank you for sharing.
flowers flowersflowers

YaddaYaddaHeyYeah Mon 17-Jun-19 18:45:52

@Theimpossiblegirl You are very welcome. I know there are a few mumsnetters that have done it or are doing it, but none have the reach Selma will have. I've been grinning all day. It's just fantastic.

Gingerkittykat Mon 17-Jun-19 19:18:58

Is this not the same as the thread removed yesterday for advertising the clinic?

YaddaYaddaHeyYeah Mon 17-Jun-19 19:23:59

No @Gingerkittykat It wasn't advertising the clinic. I had put the link so people could get more info if they wanted. Although MN said that was why they deleted it. So after speaking to them I have been very careful not to put or name the clinic.

YaddaYaddaHeyYeah Mon 17-Jun-19 19:26:35

Just remembered something else I was asked.

Yes earlier is better, but in the group there were 2 people that had had MS for 27 & 17 years

PerkingFaintly Mon 17-Jun-19 19:32:58

Bloody good luck to her.

So pleased to hear you've done so well after treatment too,

Fairylea Mon 17-Jun-19 19:34:46

I love her and the work she does for raising awareness of MS.

Thank for you sharing this. It’s very interesting.

JuneSpencer100 Mon 17-Jun-19 19:39:11

Good luck to her. And shame on MN who are so bloody money driven.

YaddaYaddaHeyYeah Mon 17-Jun-19 19:40:29

I'm really looking forward to updates if she posts them, 6 months, 12 months and so on.

cherrytreecandy Mon 17-Jun-19 19:41:25

Isn't it amazing!! It feels like we are living in the future.

I did alemtuzumab... some side effects needing looked into at present so currently not being offered for new patients.... similar 'immune reconstitution' effect.

Only had my first treatment last year, but am feeling optimistic.

Gave me so much joy when I was diagnosed that MS is one of those few diseases in which massive leaps have been made in recent years.

All the best to you.

YaddaYaddaHeyYeah Mon 17-Jun-19 19:52:06

@cherrytreecandy I've heard of alemtuzumab. A friend of mine in the US spoke about it. I had an infusion of Rituximab after my treatment. That's the same family of drugs. How often are you having it?

cherrytreecandy Mon 17-Jun-19 19:57:52

Plan is to get one more treatment a year after treatment number 1....and that should be me! Similar to HSCT in being a 'one off' (albeit in two halves) treatment to 'reset' the immune system. Though I know occasionally they can go with a third (extra) dose if needed.

YaddaYaddaHeyYeah Mon 17-Jun-19 20:04:23

That's great @cherrytreecandy That video was really interesting, thanks for sharing it. It's choice isn't it. We have the disease, we should be the ones to decide what treatments/risks we are prepared to take.
Good luck smile

YaddaYaddaHeyYeah Mon 17-Jun-19 20:08:21

@cherrytreecandy Someone I know (who also did HSCT) has been looking into stem cell treatments that can help repair old damage. I'll try and find the link, I must have saved it somewhere!

cherrytreecandy Mon 17-Jun-19 20:15:09

thanks @yaddayaddaheyyeah completely! Plus, I think (sadly) a lot of it is neurologist dependent... that and being informed enough to push for treatments of choice.

Hope all goes well for you too!

YaddaYaddaHeyYeah Mon 17-Jun-19 20:18:47

I can't find it offhand, but if I do I'll PM you it.

Yes the neurologists need to work with the hematologists.

bellinisurge Mon 17-Jun-19 21:48:15

Thank you. Interested but my symptoms thus far are relatively mild.

DaisyDreaming Mon 17-Jun-19 22:11:17

That’s fantastic you are doing so well and I hope this brings lots of awareness and donations. I didn’t know lots of people are paying for it privately. After watching a relative very slowly and painfully die from MS I always wonder how different things would of been had this been available in the early days. It’s amazing some results aren’t just showing it halting progression but actually reversing some of the damage. Wishing you all the best for a long, happy and able future

YaddaYaddaHeyYeah Tue 18-Jun-19 00:06:37

@DaisyDreaming I'm very sorry for your loss.

YaddaYaddaHeyYeah Tue 18-Jun-19 16:16:45

I meant to ask but forgot @cherrytreecandy Was it a standard, trial or private treatment?

DGRossetti Tue 18-Jun-19 16:37:17

As I understand it, stem cell therapy for MS is a treatment, not a cure, and the MS will return since the demyelinating process that causes it hasn't been fixed.

Some expectation management may be in order.

That said best wishes to any and all ...

cherrytreecandy Tue 18-Jun-19 16:50:20

@YaddaYaddaHeyYeah it was standard NHS treatment as first line, I was very grateful.

@DGRossetti my understanding is that is largely unknown. 'Potential cure' is the thoughts generally for immune reconstituting therapies, so we live in hope! Trials haven't been going on for long enough in enough patients to know for sure whether relapses and longer term inflammation are seperate processes. MS Barts blog is really informative.

YaddaYaddaHeyYeah Tue 18-Jun-19 16:57:36

@DGRossetti What makes you think it would return? I know of several people that had HSCT years ago and progression is still stopped. HSCT gives you (in 80% of cases) a new MS free immune system so the demyelinating process is halted.

I know of one person that it started again, interesting when she got pregnant again. MS can be triggered by pregnancy (as it was in my case), so tbh I wasn't that surprised when I heard about it.

I think some people have the expectation that everything is going to go back to the way it was pre MS. The important thing to remember is the aim is to stop further progression, not go back.

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