For those interested
Dr Burt is starting a new HSCT trial for patients with RR who have failed 1st line therapies.
Accordng to the blurb Sheffield have just signed up for it.
Info is on the MS Connections Blog.
Correct me if I’m wrong, but I thought Dr Burt was based in Chicago. He was certainly running an HSCT trial there last year.
Check very carefully before signing up for this.
Geoff
He is indeed based in Chicago. His current trial is being run in Sheffield as it is in other parts of the world. Sheffield is one of two Tusts in the UK who perform HSCT for MS.
Details for the Sheffield trial.
http://multiple-sclerosis-research.blogspot.com/2016/01/london-ms-ahsct-collaborative-group.html
I was successfully transplanted Kings earlier this year - so far so good - pretty sure it’s worked!
Not saying it’s right for everyone - but think people should have access to this information.
HSCT is available to UK residents off trial to those with progressive MS showing active inflammation or a new T2 lesion on a gadolinium contrast MRI (get brain and spine) - or those with relapsing remitting who have failed Lemtrada or Tysabri and display activity on MRI.
Kings College and Hammersmith Hospitals both now run the haematology procedure for auto immune disease.
http://multiple-sclerosis-research.blogspot.com/2016/01/london-ms-ahsct-collaborative-group.html
http://multiple-sclerosis-research.blogspot.com/2016/02/clinicspeak-london-ms-ahsct.html
If you meet the criteria (or think you do) you need a GP referral into neurologists Dr Richard Nicholas or Dr Omar Malik at Charing Cross Hospital who are on the MDT board who recommend patients for the procedure.
Wishing you all well.
congratulations snowbeetle. please tell us more… at least to as great an extent as you are comfortable with of course…
are you PPMS / RRMS / other?
does it strike you that this type of therapy is essentially a ‘cure’?
is there a schedule for you to have the therapy repeated?
was the procedure difficult in anyway (painful, full of side effects, took a long time and needed significant after care)?
how has your disease, your symptoms improved since the procedure?
how soon after the process did you begin to perceive improvements / changes and what form did they take?
what do you plan on doing next?
were you taking any DMDs and do you need to continue with them?
what would you tell those who are scared or sceptical of this strategy?
i wish you all the continued success and the very best of luck!
Thanks Paolo - hope things are going well for you too.
are you PPMS / RRMS / other?
RRMS having failed on Tysabri showing active lesions on MRI (meeting the criteria for NHS funding).
does it strike you that this type of therapy is essentially a ‘cure’?
Pretty much yes, don’t want to get too cocky as I understand people’s MS can go through blips in the first year or so, but the clinical trials are showing 80-90% long term remission over 5-10 years. In my view halting the faulty immune system is a ‘cure’, I now need to work on recovering brain / spinal cord damage with intense physio, healthy eating, enjoying the sunshine etc The neural reserve is already kicking in so hope to say in a few years I am cured.
is there a schedule for you to have the therapy repeated?
nope - it’s a one off. I have heard of 1 or 2 people overseas requiring some follow up chemo, but it’s very rare with this protocol (cyclophosphamide + ATG).
was the procedure difficult in anyway (painful, full of side effects, took a long time and needed significant after care)?
Yeah it’s pretty intense and difficult, it’s high dose chemotherapy so comes with the runs and the vomiting / nausea, hair loss, etc but you push through. Your immune system is wiped out to zero so you have to stay as an inpatient for 3-6 weeks while it rebuilds (that’s how the stem cells help). Note the chemo is the fixer here, it wipes out the faulty immune system. The stem cells simply speed up the recovery of the new immune system to be a bit faster, it would naturally happen on it’s own but they want it to happen promptly so you don’t develop an infection. It all requires hygiene, food guidelines etc for a few months, if not up to a year, depending how your immune system rebuilds. It’s not for the faint hearted that’s for sure, it’s a serious medical procedure, but it works.
how has your disease, your symptoms improved since the procedure?
The goal of HSCT is to stop progression, so I’d be happy knowing my MS was not going to get any worse frankly. I’m only a few months post transplant - and the haematologists say themselves can’t judge the success until 2-3 years away yet. However I’m already walking several miles a few days a week, off the bladder medication finally, pain reduced, eye problems gone, fatigue has lifted a fair bit - I’m not perfect yet but the trajectory is good.
how soon after the process did you begin to perceive improvements / changes and what form did they take? Took about 8 weeks for me, though it happens faster / slower for others.
what do you plan on doing next?
Hoping to return to the workforce and get a new job soon, maintain a healthy active lifestyle … who knows may even start a family one day yet! The world is my oyster.
were you taking any DMDs and do you need to continue with them?
Was on Tysabri, goal is to never need a DMD again, and I don’t know any transplantees who’ve needed to use immuno suppression again, it’s highly unlikely. Your MS nurse / neuro will likely tell you they know someone who has done it and is back on a DMD… these people have not had the Cyclophosphamide + ATG cocktail of chemo and have likely paid someone for a ‘stem cell treatment’ overseas - this is not a bone marrow transplant - now known as HSCT. Stem cells alone will not fix a faulty immune system. You need to wipe it out or be on long term immuno supression (DMDs).
what would you tell those who are scared or sceptical of this strategy?
It’s certainly not everyone’s cup of tea that’s for sure.
Read all you can on Pub Med (medical journals site).
NEDA patients at 2 years (ranging from 78% to 83%) and also at 5 years (ranging from 60% to 68%). This is even more relevant when considering that MS patients who underwent aHSCT are much more active than patients usually enrolled in clinical trials. The emerging evidence of the efficacy of this therapeutic approach in early aggressive and treatment-resistant RRMS calls for the organization of a randomized comparative trial to fully evaluate the risk-benefit profile of aHSCT in patients with highly active MS not responding to DMTs.
This is Muraro (London) calling for their proposal to do another UK trial to be funded essentially.
The Phase 3 MIST /HALT MS trials from Dr Burt in Chicago (and the Sheffield Panorama programme) are due to publish 2018-2020 or so I broadly understand. Here’s Phase 1 & 2 summary: Autologous non-myeloablative haemopoietic stem cell transplantation in relapsing-remitting multiple sclerosis: a phase I/II study - The Lancet Neurology
Also note that the non-myelo protocol is less harsh than cancer bone marrow transplants and the fatality rates coined now from the past 10-15 years are about 0.5%, broadly those who have passed away have had severe impediments already with breathing difficulties from MS etc They haven’t killed anyone in London yet. Go into it with your eyes wide open though.
If you’re running out of options as you have a progressive diagnosis (and no DMD options) or you are RRMS and failing on Tysabri / Lemtrada - you would want to consider researching and applying for the London programme.
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Thank you for taking the time to respond.
Whilst i am not in a position to need or even want HSCT right now, i know a number of other readers in here might be. Your posts of ‘pioneering endeavour’ might help others to make a change for the better…
I look forward to hearing nothing but positive things from you and hope that you continue to contribute here, even if you might reasonably be considered ‘cured’.
Without prematurely getting anyone’s hopes up, all the very best and congratulations once again.
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Thanks a lot for your support Paolo - agree it’s not right for everyone - but if you need it am glad to share the information.
I was really shocked when they told me this was their recommendation (I went for a second opinion after years of the same dogma ‘you’re getting the best we have in Tysabri / Lemtrada is too aggressive for you’). My research helped me conclude actually I was in the right position to be looking at it as was relapsing regularly on Tysabri.
For those that are interested and may have questions on this topic
The MS Society spoke with leading expert in the field of stem cells and MS research, Dr Paolo Muraro from Imperial College London, about making sense of the study and what it may mean for people with MS.
Best wishes
Stewart (admin)
quote = What this treatment can’t do is reverse damage already done - in progressive MS.
This says it all for most of us. And it is a very aggressive form of chemo.
Also just to add risk tolerance is different for everyone - for me I decided risk was worth the reward.
There are a lot of brain plasticity / neural reserve concepts that show there can be an element of repair.
Hope this statement from Muraro can help someone: “If someone has progressive MS, but is still having relapses that are causing damage (and therefore worsening disability), the treatment may be able to stop this.”