hsct treatment-yes or no???

Symptoms and treatments
21

More serious queestions, Raymond.

No, HSCT is not just chemotherapy. The basic idea is to harvest stem-cells from the patient’s own body (say from bone marrow from the thigh), zap the immune system (so-called reset it), put the stemcells back as near to the heart as possible (a vein in the neck is favourite) and let them get to work repairing the myelin. There is the first problem - unless the stemcells are put back using the patient’s own blood (not easy if you have to store it for any period of time while the SCs are extracted from the bone marrow) then the donor blood must be correctly treated or you are just putting new problems back in.

The idea of chemotherapy is to use an agent (often based on a platinum salt) that will stop the growth of the cancer cells (which tend to be much faster growing than ordinary cells) then zap the area around the tumour with pulsed X-rays to kill the inactve cells in the tumour. This is considered to be non-invasive since there are no incisions or insertions (HSCT is, of course, invasive by its very nature). Typically this is done over a three week cycle - one week of therapy, one week recovery, one week of normal life.

So, cancer patients go through a different process (and that does not always work either).

When (and I am sure it will happen) all the kinks are worked out of the stem-cell procedure, then it will probably bring a lot of relief to MS patients. I am also sure it will not happen any day soon (and certainly not in time to do me any good).

No, I don’t think you are way off track at least you are asking the right sort of questions. Don’t give up hope, but don’t hold your breath either.

Geoff

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22

My neuro, a leading light in MS research sends me on my merry way with his consent and blessing.

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23

HSCT is nothing to do with repair.

The immune system is destroyed and regrown from the patients stem cells (usually bone marrow). The idea is that this ‘resets’ the immune system so that it no longer attacks the central nervous system.

The body may then be able to repair some of the damage itself once the ongoing attacks from the immune system stop (this is why edss scores often improve for MS patients treated with HSCT or other highly effective therapies (e.g tysabri, campath))

The procedure is approved by NICE for the treatment of certain cancers and has been trialled in MS for many years.

“On the basis of EDSS, autologous HSCT in MS expected to induce either disease stabilization or improvement in over 60% of patients, irrespective of selection criteria”

You can read a positive HSCT experience here - http://themscure.blogspot.com.au/

In my view, there is a window of opportunity at the beginning of the disease when aggressive, early treatment can effect the long term outcome of MS

I think that HSCT, campath and other chemotherapy treatments are sensible options if one wishes to prevent brain damage - it worth remembering that the damage MS causes is permanent

24

I would just like to clarify something for Raymond13. Stella lost her toes as a result of necrosis as previously explained, however the necrosis was due to a powerful drug called Noradrenaline (to support someone on life support) that Stella was put on due to septicaemia, and why she was in intensive care very poorly. The septicaemia came about because she was immunosuppressed ( means you can pick up any nasty bugs very easily) from the chemotherapy drugs given to Stella. These have to be given prior to the stem cell treatment. So the treatment of HSCT itself did not cause the toes to fall off, but by having the chemo and then complications following and the drug caused the problem. This is a serious complication of the process she underwent to receive HSCT, Hope this helps x

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This is Dr Muraro.

26

thanks to you and jeff for your responses, i like the fact that once again a thread has appeared that does not discuss the “route 1” DMDs, which i feel have served us well in the war that is MS.

However, nobody can deny that i could take, copaxone,tysabri,bg12 blahblahblah till im 158 and they would not stop the MS.

as ive said before, im interested things that have the potential to provide what i want. No compromises.

I feel that once i look into HSCT i’ll find interesting ideas and i’ll find things that scare the **** outta me

I live my life without fear because i have MS, My dad always said to me, dont look at things like a problem, look at it like a challenge. thats me 25 now and if i ever end up lying on my back, riddled with brain damage, i’ll sleep easier knowing that i always kept my eyes open ready for that chance to make it better.

Maybe im a touch dramatic, but thats the thoughts that roll around my skull

27

Hey all,

I think some of the negative comments on this forum are a little misleading.

HSCT is a well understood, tried and tested procedure that has been undertaken over 2 million times worldwide, dating back to the late 1960s (predominantly as a cancer treatment). As a treatment for MS, it has undergone numerous clinical trials worldwide, and is currently the subject of an FDA-approved Phase III Clinical trial (which means it has passed the Phase I and Phase II gates already). In over 10 years worth of trials, it has been robustly shown to put the disease into sustained remission for patients with the inflammatory phase of the disease.

Thinking of it as a stem cell treatment per se is not strictly accurate. First and foremost, it is a targetted chemotherapy treatment which wipes out the T Cells of your immune system (which attack the myelin in nerve cells in the inflammatory phase of the disease). The role of stem cells (which are extracted from your blood prior to treatment and cryogenically frozen for the duration of chemotherapy - typically around 4 days) are used only to speed the repopulation of your ablated immune system following the chemotherapy, in order to reduce the recovery period in which you are at risk of infection.

The current Phase III trial does not involve any radiation therapy, and is a non-myeloablative procedure. It is also relatively mild in toxicity compared to the myeloablative regimes used to treat many cancers (albeit it not without some risk, as per any major procedure).

What it is not is a “cure” for MS. It does not reverse nerve damage alraedy incurred, and does nothing (or very little) for those in the progressive stages of the disease who no longer experience inflammatory lesions. This is because at that point in the disease, MS has progressed to an axonal degeneration disease, independent of the inflammation caused by the immune response (so stopping the inflammation does not prevent furher progression).

However, if treated in the early stages of the disease (RRMS) in which inflammation is the cause of the symptoms and damage, it has been proven to be highly effective at resolving the inflammation and therefore halting the progression of MS (no EDSS progression, no new GAD-enhancing lesions), which in turn can prevent the progressive stage of the disease from ever occuring.

The basic curative effect is due to the reconstitution of a self (myelin)-tolerant immune system (as it was when you were born, before whatever process triggered it to wrongly view myelin as an invader).

This is not to be confused with MSC stem cell therepy (as per Dr Muraro’s video) which is focused upon an intrathecal infsion of mesochemal stem cells, with no chemotherapy, to promote remyelination and potentially modulate immune activity to some extent. This is a promising area, but does not restore a sustained self-tolerant immune system and has not (as yet) been proven as an effective long term treatment for MS. It is also the treatment predominantly promoted by clinics in Panama and China, as mentioned by a previous poster.

28

I genuinely think people need to understand what treatment is being talked about before they are so negative or dismissive about it. HSCT is basically about the chemotherapy. If MS is in fact are autoimmune disease, the chemotherapy destroys your current immune system and then the stem cells that are collected (in nearly all centres currently offering treatment they are gathered from the blood, not from a bone) they are frozen, and then reintroduced to rebuild your ammunition system. Depending on the Chemotherapy regime that is used, changes the risk to the patient. There is a non-myeloablative treatment, which is considered mini chemo, or the myeloablative regime, which is a lot stronger. There are many neurologists who will admit this shows very promising results. However they feel it is too risky as there is a 1-5 % of death from chemo, where as In most cases MS isn’t a terminal disease and so current therapy focuses on trying to slow disease progression and maintaining quality of life. The risks with HSCT are chemotherapy which is very tough on the body. You have to manage your reduced immune system post treatment. As well as a slight chance of 2nd autoimmune diseases in the future (which MS’er have a similar risk of catching) There is a chance that your disease could come back in the future. As there are not long term 20/30 year follow ups. But for some MS’ers the risk is worth it. That is a personal choice and I totally understand it. Anyone comparing this treatment to CCSVI needs to do research and not read tabloids.

29

WOW so many experts who needs a Neuro?

30

Basically if you want the treatment put up and shut up why ask total strangers what you should do…had a boob job last week surgeon popped them on my head but that’s ok later found out he wasn’t a surgeon at all!

31

Actually MPUK your wrong. Dr Muraro did use chemo with his HSCT if you read Stellas journal

'I was told though that it will involve 6 days of chemo to shut down my immune

system, I was told that they will try to keep on top of the anti-sickness drugs but I will
still feel quite unwell during this time. Following the 6 days of chemo, I will have my
stem cells transplanted to me. Then finally, the day after stem cell transplant I will be
given a rabbit drug?! This is a T-cell suppressant, this is done, just in case there was
a rebel T-cell (this would be one the little buggers that cause all the trouble with MS

  • die T-cell die!) in my bag of stem cells transplanted. So by suppressing these cells,
    it means that when they rebuild again, there is no dodgy goings on afterward!
    Because this drug is made of rabbits, does it mean I will become a carrot junkie,
    having to settle for a cabbage or some Brussels for a fix when the
    greengrocer/dealer has a carrot drought, lmao! :smiley: Sorry, I had a silly moment there! ’
32

Just some good news from MS-UK about HSCT :

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

33

For people with PPMS I can understand why they would try anything. DMDs are no good for them so they are offered no hope from their doctors. HOPE makes up get up in the morning and face the day. People with RRMS get expensive DMDs on the NHS. Drugs like fampridine and sativex that are proven to really help walking isssues in PPMS are only availabe to people with PPMS if they are prepared to pay. It is not cost effective for drug companies to to research on PPMS because there are not enough people with it.

I dont know what I have yet but been under intensive investiagation now for 4 years. No dx yet so no treatment. Neuro wont even let me at least get started on LDN even though ms has been listed as a possibility amongst other things.

I have a spinal lesions cause by ???. I have looked into stem cells amongst other things as I feel totally lost and abanded by the NHS. BasicallyI need hope.

Moyna xxx

34

Hi Rosex,

I am a member of an Australian MS support Group and spoke with Kristy Cruise, the lady you refer to, after she had been to Russia and has the HSCT done.

I have also been in touch with Carmel Turner, another Aussie who had the treatment done here in Australia. For a brief time Canberra hospital was treating people successfully with HSCT but it is not as simple as it sounds. It IS high risk. Completely wiping out a person’s immune system is very risky and leaves them very vulnerable to all sorts of infections that can then be fatal. It doesn’t work for all types of MS and the neuros who were doing it here had a very narrow selection criteria indeed. And thirdly the benefits aren’t permanent or inded all that long lasting. The general consensus is that it will probably put you into remission for about 4-5 years and that it works best if you also maintain and DMD treatment as well.

So a hugely risky and costly procedure for some temporary remission at this stage. It is no longer performed here due to hospital’s ethic committees pulling the plug on it which is why Kristy went to Russia. Would I do it? No. I followed Stella’s story as she was going through it at the time (as has been mentioned earlier on this thread) and that put me off anyway but after hearing from Kristy and carmel about the minimal overall benfits balanced against the horrendous risks it certainly isn’t for me. Quite apart from the fact that I could never afford it.

I know it seems so hard when you can feel the MS chewing at your brain cells but I truly do believe that patience is our best avenue at present. In the last decade the field of MS treatments has been booming and we are seeing new drugs coming out every year. Stem cells probably are the way forward in some shape or form. It won’t be long; hold on and stay hopeful.

Cheers,

B

35

http://multiple-sclerosis-research.blogspot.co.uk/2014/04/brazilian-guidelines-for-bone-marrow.html

The comments are fascinating. If you are able to pay, it’s a good idea to go and do some research at this blog first. The Profs at the blog are quite positive about this as a treatment and rational.

36

I’m curious to know where your general consenous comes from, because all of the published data from the phase 1 and 2 trials completed does not agree with your statement. The 60 minute program that was televised in Aus that was about Kristy also would not agree with your above statement. Cambridge, Chicago, Brazil, for example have either approved or are in phase 3 trials for this treatment. I have seen a number of neurologists who agree that HSCT with Chemo is a likely medical procedure that will stop your autoimmune disease progressing, however, because it is a life threatening procedure and MS isn’t life threatening the risk is too high. You can google numerous papers that confirm this. My question is the risk with the most effective MS treatment in the UK (Tysbari) of PML is also a life threatening risk. (Though lower risk) so it’s up to the individual. Is it scary to have life threatening procedures, yes, is it expensive, yes. Does it work. (RRMS treatments have the best results) I would simply say if anyone is considering treatment google the published papers that are out there and read others experiences. Don’t just trust what I or anyone else says on a forum, because people tend to put their own spin if they are in favour or not. (FYI I am undecided on whether to pursue this or not)

37

Thanks Hobs.

You’re getting your wires crossed on this.

The video you posted earlier in this chain with Dr Muraro - to which I referred in my post - talks about MSC therapy (Mesochymal Stem Cell infusions). This does not involve chemotherapy, but rather involves the injection of cultured stem cells intrathecally (directly into the cerebrospinal fluid) and the stem cells themselves are proposed to be the active element of the treatment by either facilitating a degree of repair, reducing inflammation, or modulating the immune attacks.

The treatment that Stella underwent - also under supervision from Dr Muraro - was HSCT, which is a completely different procedure whereby chemotherapy is the active component of the treatment (to wipe out the autoreactive immune system), and a stem cell “rescue” is used to help repopulate the immune system thereafter. The stem cells in this instance are used only to repopulate the immune system.

2 very different treatments.

HSCT itself has been performed over 2m times, has been around since 1960s as a treatment for various types of blood cancer, and has undergone a number of clinical trials internationally for the treatment of MS. In Chicago, under Dr Burt, it is currently going through Phase III trials, which will likely see this become an FDA-licensed treatment (for some patients with certain types of MS) in the early 2020s.

Thanks,

Matt

38

HSCT is something I’m watching with interest. It is performed here in the UK for a small number of patients with highly agressive RR. For anyone interested you can look up the NICE paper Clinical Commissioning Policy: Haematopietic Stem Cell Transplantation (HSCT) (All Ages) April 2013 and also google the BSBMT indications document.

39

I know this is an old message stream but has anyone has stem cell treatment since these postings and want to feed back the results please?

40

Have you tried putting HSCT in the search box? You can read a through a lot of threads on this to find out about other people’s experiences and views. You might also look at Lemtrada, which has some similarities to HSCT.