HSCT in the News

Yesterday in the mail we had another news story on HSCT, 

This is Haematopoetic Stem Cell Therapy, which I’m sure you have all heard of as some of our commenters ensure the topic of conversation steers that way every day ……Yawn.

You don’t need a neuro to do it and if you have the cash…off you go.

Whilst this modus operandi is consistent with most fad treatments that you feel compelled to try, and use to suggest there is some pharma conspiracy about why it is not investigated.

However, the difference here is that there is solid data that it works.
As we all know neuros in grey-suits are a conservative bunch and if they get the willies with the thought of using something like alemtuzumab, is it surprising that they positively tremble with the fear of using HSCT and its consequences (which used to be mortality). However, it is your risk but it is usually reserved for the treatment of last resort.

Based on the data presented is it probably the most effective DMT, it should be as in one form HSCT (ablative) removes and replaces your immune system. Yet it is not widely used. Why not…

The conspiracy theorists suggest we are a biased bunch supporting pharma to the detriment of HSCT..

In the article by the Mail (as Newspaper) will fuel that clamour. It says “About 60 patients have now been treated as part of the ongoing study at London’s King’s College Hospital and Imperial College Healthcare and doctors say that the effect has been dramatic for some”.

Reading the other direction it therefore says “there are no dramatic effects for many” …..So go into this with your eyes wide open as it may not be the cure you are hoping for.

If you are going to do this ensure you sign up to the MS register?Narcoms etc

Sign up here (CLICK), as it is vital that the magical effect, or not, is recorded somewhere. Imagine in the hundred/thousands of people who have taken a trip to Mexico/Russia has been followed there would be massive anecdote and information to help inform choice would be available.

At a cost of £35,000 per patient, the price is comparable to a single year of MS drugs….well not really for some as £35K is 6 years worth. However if the NHS took up the slack when haematology clinics have spaces, it would certainly be cost-effective in the long term, as alemtuzumab costs about £60,000 + the rest for monitoring.

The procedure is described and importantly the Doc leading the study says “For those with significant disability, we don’t expect a dramatic transformation” I say again 

For those with significant disability, we don’t expect a dramatic transformation“….Do this with your eyes wide-open.

‘If they “are in wheelchair, they are likely to stay in one. But they may not get worse. And there have been very good results with patients with earlier-stage MS”

Then they say the study was published a year ago, we reported on it a year ago, and not much has happened since then….Yawn

Read more: http://www.dailymail.co.uk/health/article-4891036/Therapy-offer-new-hope-MS-patients.html#ixzz4tAqDlBC0 

ProfG has been writing that there is a UK application in progress.                                                                                           

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  • Did Sarah Brown scorch her ovaries? Is she still fertile? He hair has that post-chemo softness to it. She does look radiant as if she doesn't have MS.

  • Below the comment I posted yesterday on the general blog area. Can you please reply? Many thanks

    'yes but the point is they are saying they will not get any worse and I believed that people in wheelchairs with progressive MS were not eligible for such treatment!
    for someone in a wheelchair to not get any worse, that is a huge bonus!
    Prof G has the eligibility changed?'

    • what do you need a reply to? there is 'second class' (ie. non clinical trial) evidence that hsct could potentially slow down progressive ms (not stop, not cure, just slow down). just like Ocrelizumab, for which, as a result of a changed trial design, there is now clinical trial evidence.

      in my view, it's difficult to see why ocrelizumab would slow down progression in some with people with advanced or progressive Ms and hsct wouldn't.

      what else is there to say? it all depends and everyone is individual lol.

    • ps. the only additional thing to say on top of my earlier comment, is that i don't know or it may be unknown generally, how much people in wheelchairs risk by having hsct v. ocrelizumab in terms of reduced function post treatment (regardless of whether it's hsct or ocrelizumab).

      i'm not talking about the side effects – to me, the risks associated with one big immune wipeout v. continuous half the immune system wipeout for an indefinitive period are up for debate.

      but i don't know what has the potential to minimise the worsening associated with toxic treatment of people who are already fairly unwell.

  • You cant even present HSCT data objectively. Your yawns should be reserved for that. It's not a flippant topic, and you should take an MS treatment that has the most efficacy for decades, with the seriousness with which it deserves, and give the pwms the respect they deserve.

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