Last reply 2 years ago
HSCT stem cell transplantation

Hi everyone,
I have had this treatment carried out (starting with chemo and then being given my own stem cells back to me) and am wondering if there is anyone else out there that has been through the same. I’ve been recovering for 3 months now and am suffering from serious tiredness. If you’ve had this done please get in contact.
Thanks

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stumbler
4 years ago

I’ve not been through this myself, but I can see the potential for this treatment.

When you look at what your body has gone through and what it needs to go through, to regenerate your immune system, then this initial period of tiredness may be a small price to pay for the perceived benefits.

I wish you well and keep us updated as to how you progress.


jdeeley
4 years ago

Was this treatment done on the nhs?


chrisbtn03
4 years ago

Yeah I was lucky enough for the NHS to do this for me. The doctors told me that the MS was extremely aggressive and if I didn’t go through it I would be in a wheelchair or worse. I had lesions in my brain and progressing down my spine, just waiting for an MRI scan to see if it’s been successful. Thanks for your reply, just hope I can hear from someone that’s been through it too!


todd
4 years ago

I can’t give a first-hand account, but I know someone who had this done as part of a trial in the US in June or July of 2013. I believe she was out of commission for a few months, long enough to miss the beginning of the school year as a teacher. She eased back into things, helping around the school in January of this year, if I’m not mistaken. Apparently the goal in using HSCT was to slow progression of the disease, but they’re finding that in many cases, function is being restored. She’s off medication completely, can now go jogging, and was about to start playing tennis when I last spoke to her. It’s a fascinating treatment. It’s been around since the 60’s, used for treating cancer, but they’re finding it effective for treating MS and other autoimmune disorders like Lupus. There are people, years removed from the treatment, who have no signs of MS.

I wish you the best in your recovery.


chrisbtn03
4 years ago

That’s amazing to hear of your friend who had such a fantastic recovery. Thanks so much for letting me know about her. I’m heading in the same direction with recovery and getting stronger everyday but don’t see myself fully returning to work until jan / feb time. I’m starting to ease myself back already by only doing a few hours a week but that’s all I can manage. The treatment is revolutionary really, I find it fascinating that we can repair our bodies with our own stem cells! If I’ve been ridden completely of MS it will be amazing. I don’t suppose she’s a member on this site is she? I would absolutely love to speak with her. Thanks again!


tabbycat
4 years ago

Hi, I am really excited to hear you had this done on the NHS! The only person I have heard of paid a huge amount of money to have it done privately in Russia and is still in isolation after the chemo.
Do you mind me asking what your symptoms were before the treatment and how long have you been diagnosed?
The person who went to Russia is a very distant contact that I have never actually met, so I cant put you in touch at the moment I am afraid.


tabbycat
4 years ago

Have just found this site with lots of diaries of people who have gone through this – hope it helps!

http://www.ms-uk.org/HSCT


chrisbtn03
4 years ago

I had mixed symptoms to begin with, such as severe tiredness and a few lapses over about 3 years where I had no balance, dizziness and I lost my thought but then I lost my sight. I had bad optic neuritis and the MRI scans I had done showed me to have a lot of lesions in the brain and going down my spine. I’m starting to understand how lucky I am to have this done on the NHS! Fingers crossed it’s done some good. Thanks for posting the link by the way, I’ll have a good look through!!


bloomers1968
4 years ago

Hi

I discussed this with my Nuro and he says its available for aggressive MS but was he told me its more a delaying treatment as it just seems to reset your immune system for approx 4 years till it comes back. I hope he is wrong and all goes well. He did say if you had an identical twin it was likely to work rather than giving you back your own cells


snowbeetle101
3 years ago

Good for you Chris – I’ve just been offered it this week on the NHS and umming and aahing over whether to bite the bullet and take the ticket on the roller coaster ride. It is getting consistent results in the 80-90% range around the world of complete remission and 50-60% of people improving their EDSS scores so not to be sneezed at.

You may find these Facebook groups helpful for people who have already done it – from what I’ve read severe fatigue to 6 months as your body rebuilds is common.

Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases
https://www.facebook.com/groups/149103351840242/?fref=ts

https://www.facebook.com/groups/149103351840242/?fref=ts
Chicago HSCT Stem Cell Transplant Study – Official Patient Run – Dr. Burt

Good luck with your recovery!


chrisbtn03
3 years ago

Hey there snow beetle! Nice code name by the way. When I went through the treatment last year the neuros told me if I didn’t go through with it i would be in a wheelchair within months. If they think that your MS is at the right stage in the process to go through with it, DO IT! Seriously for me it was a no brainer! Recovery is slow but I’m nearly there now


snowbeetle101
3 years ago

This is great news you are on the precipice of your new life – reboot 2.0!

Thanks for the encouragement. I’m going to see what the IVF doctors have to say first… the infertility is a severe side effect I’m finding really challenging.

Also the fact I (nor the neuros) really do not think I’ll be in a wheelchair that soon, I’m doing pretty good really, just had 3 relapses come on in past 12 months on 4th year of Tysabri so it’s certainly time for an induction treatment of some kind.

Did you easily get to the point where you believed what you were doing was right, and that you were going to be successful? Or did it come for you later?

I’m concerned I’ll continue to doubt my choice throughout the treatment, and as a result let the worry be too strong for an effective recovery. I’m usually pretty good with worrying, but this decision has taken me up another notch that’s for sure! I think I’m going to ask to see a therapist and work through it with someone who can help me get there.


chrisbtn03
3 years ago

My decision to have the treatment was a definite yes because my eyesight was a state and I couldn’t imagine coping with life in a wheelchair. It wasn’t particularly hard going either, the only touth part was having patience.

Going through HSCT would hopefully be the end to your relapses, well that’s the aim.

I didn’t know about the effect on IVF treatment, that’s a difficult one that I’m sure you’ll need to get good advice on. Before my treatment I was told it would make me infertile, so I had a sample taken and frozen.

I honestly think that once MS kicks in and you seriously deteriorate there’s not much chance you’ll recover to the same point you were at before. That’s just what I believe and have felt so don’t hold me to that. Having the treatment won’t let it get any worse, hence me not being wheelchair bound. If the neuros think that’s what the future may hold for you I’d jump at the chance of the treatment! It’s not easy going I’ll admit but I made it through really well and have recovered.

I really feel for you, it’s a difficult decision (one I didn’t have to make) but the key really is to be POSITIVE about it all ?.


chrisbtn03
3 years ago

By the way, this awful photo on here I can’t seem to change, I’ve got all my hair back now and I’m looking alright!


snowbeetle101
3 years ago

Thanks for your encouragement Chris. I’m warming to it gradually. My gut / heart reaction was to do it, just taking my brain a little while to catch up.

I see your first post was in December, I’ll be a few months behind you on your anniversary by the time I get going (more likely Feb-March after Jan lumbar puncture). Wondering how you found it going through winter as recovery period? Cold and flu season, etc. I kind of thought it would be good to be ‘stuck at home’ recovering over spring / summer and then have read more about not staying in direct sunlight for too long post chemo as skin is more sensitive and likely to burn badly. And also it would be great to be out and about by the summer and doing walks in the parks, etc Swings and roundabouts hey.

Hope you found some others post treatment via those Facebook groups. Also my near mentioned that he’d put me in touch with other patients in the same hospital for more info / support / communication too, perhaps that’s another route?

PS new hair looks great!


kitty
2 years ago

Hi,
Ive heard many successful stories from people who have had HSCT and Im sure you will be amongst them.

However the other day I met a young mother who told me she had HSCT and it doesnt appear to have worked as she had since progressed..I was confused and didnt understand why as she had to of fit the criteria prior to this being done. This made me very sad for her and for MSers in general.. because I couldnt help but feel that HSCT like drugs available may work for some and not others.. I guess I was wanting to believe that HSCT is the cure for all of us.

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