Tuesday, 19 January 2016

After the programme.Can you Stop My MS?

#MSResearch #MSpanorama.
Following the recent BBC 1Panorama Programme, we expected there would be interest in HSCT. For more information about autologous stem cell transplantation in MS, the BBC Panorama programme or other media coverage, please visit the special website http://www.sth.nhs.uk/news/news?action=view&newsID=787 where you can find information and specific contact details.


For further information on ASCT treatment and the research trial, please see www.sth.nhs.uk/panorama or call  0114 2715934.


                        Picture for Illustrative purposes only

The results look impressive, but in the programme there was limited discussion about the risk benefit profile. The Haematopoeitic stem cells will form new white blood cells and hopefully re-boot the immune system such that MS is gone. 


However, their benefit is not via stem cells that form new myelin and nerves and the benefit observed is likely to be due to getting the immune response switched off and allowing the bodies compensation and repair capacity to improve function. Similar types of benefit can be seem with some of the other current DMT, when active disease is turned off. 

The MS Society comments

AHSCT is an aggressive therapy and its short term risks are higher than other MS therapies. Typically, the person receiving a transplant will be closely observed for about a month in an isolation room whilst receiving antibiotics and transfusions to support them through the procedure. Prior to any treatment decisions being made a haematologist and neurologist at the HSCT centre will carefully assess the general health of the person receiving the transplant and their ability to tolerate this type of treatment.

We would strongly encourage people with MS thinking about undergoing AHSCT to discuss this carefully with a specialist healthcare professional, such as their neurologist or MS nurse first, to weigh up the potential risks and benefits.

If you are thinking about undergoing AHSCT, it is important that it is administered in a highly regulated environment. The gold standard of this is to be a part of a clinical trial, which will be highly regulated and monitor participants long term.

Any centre performing transplantations, for MS or any other condition, must have a Joint Accreditation Committee-ISCT & EBMT (JACIE) licence. In order to get a licence, the centre must comply with a huge number of quality standards which are subject to regular inspection and audits. As well as having a JACIE licence, in the UK centres are highly regulated by the Human Tissue Authority (HTA) and the Medicines and Healthcare products Regulatory Agency (MHRA). If you are referred by your neurologist to receive AHSCT, you should ask them about their experience of the centre and make sure it has the necessary licencing.

It is important to note that undergoing this treatment outside an accredited setting, including overseas units, can have implications for your health as standards differ between centres. There is also an emotional cost to consider, if your neurologist is advising against AHSCT, it may be because it is unlikely to be effective in your circumstances based on current research. It can be disappointing and frustrating if the treatment does not deliver the results that were promised as well as financially damaging if you are paying for the treatment abroad. There are also long-term complications associated with AHSCT and if you are receiving the treatment outside of an accredited centre, you may not receive the necessary aftercare
.

ABN statement on autologous haematopoietic stem cell treatment of multiple sclerosis

The Association of British Neurologists welcomes recent research into autologous haematopoietic stem cell treatment of multiple sclerosis. Despite many advances in the treatment of this disease, for some people it is disabling and life-limiting. New therapies which combine high efficacy with acceptable side-effects are certainly needed. However, as a recent commentary put it “the jury is still out regarding the appropriateness and indications of haematopoietic stem cell treatment for multiple sclerosis” (Soldán & Weinshenker, 2015).
Autologous haematopoietic stem cell treatment should only be seen as a potential immunotherapy in multiple sclerosis; there is no suggestion that these stem cells are reparative. Therefore there is no rationale for its use in people with progressive multiple sclerosis. As the experience from Sheffield shows, some people with relapsing-remitting multiple sclerosis anecdotally report considerable benefit from autologous haematopoietic stem cell treatment. Similar successes with this treatment have been reported from many small open-label studies since the early 1990s, but these are not powered to identify a true clinical benefit (Snowden 2012). However, there is a treatment-associated mortality. This has decreased from 6% to approximately 1.5%, probably because of the reduced intensity of contemporary immunoablation regimens (some of which include alemtuzumab, itself a licensed treatment of multiple sclerosis). The only controlled trial to date, the small (n=21) Autologous Stem cell Transplantation International MS Trial, demonstrated that transplantation was more effective at reducing new MRI lesions than mitoxantrone (Mancardi 2015). But larger controlled studies are needed to explore the optimum transplant conditioning regime, and its relative efficacy and safety compared to other licensed therapies. Professor Sharrack and others are participating in one such trial (ClinicalTrials.gov Identifier: NCT00273364).

We would encourage neurologists to support controlled trials of autologous haematopoietic stem in established transplant centres. At present, it does not have a place in the routine treatment of multiple sclerosis (see ABN Guidelines ).

Paz Soldán MM, Weinshenker BG. Moving targets for hematopoietic stem cell transplantation for multiple sclerosis. JAMA Neurol. 2015 Feb;72(2):147-9.

Snowden et al. Haematopoietic SCT in severe autoimmune diseases: updated guidelines of the European Group for Blood and Marrow Transplantation. Bone Marrow Transplant. 2012 Jun;47(6):770-90.

Mancardi et al. Autologous hematopoietic stem cell transplantation in multiple sclerosis: a phase II trial. Neurology. 2015 Mar 10;84(10):981-8. 

53 comments:

  1. Neuro's will advise against because it's not approved. End of. People have little choice but to go aboard.

    The drug companies are happy to push DMTs with various risks if there's money to be made. Sadly with HSCT there isn't. If HSCT could be packaged up and branded it would be on the shelves by now complete with shiny booklet.

    I imagine the long term risks of HSCT are lower than some DMTs.

    The programme made me sad.

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    1. Until it is approved many docs won't touch it

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    2. So true....$$$ rules the day. There are some who are proponents but they are the minority.

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    3. Yeah I get that. I was referring to the comment you made re "if your neurologist is advising against AHSCT, it may be because it is unlikely to be effective in your circumstances based on current research". As it's not approved most (understandably) will advise against for that reason alone. The likely/unlikely benefits have little to do with it.

      I could not be a Neuro. I'd find it soul destroying to see lives crushed because of the legalities surrounding a treatment.

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    4. Some of us know people that had kidney failure and needed a transplant following chemotherapy. This treatment has risks like anything else.

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    5. Of course it has risks, serious ones, as do all the big DMT players.

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  2. medical telly programmes are entertainment - and limited re giving all the angles.

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  3. My partner handled HSCT far better than Tysabri. In fact, she has not had a single side effect of HSCT 2 months in. The statement that the "similar types of benefit can be seem with some of the other current DMT, when active disease is turned off." is wrong. Please provide evidence that supports this statement. Even Dr Burt, the golden clinical trial US researchers, has gone on record saying even the most impressive Lemtrada reversals are not comparable to that of HSCT. At 2 months in and with no side effects associated with HSCT, her quality of life is immeasurably better than on Tysabri. She decided against Lemtrada because of autosecondary immunity issue. If you are going to write an article on HSCT, do it the same courtesy you give other topics. Provide unbalanced conclusions and research. If HSCT has bad side effects explain what they are. I will then refrain from noting that Tysabri was authorised for MS, people suddenly started dropping off with PML, docs took people off Tysabri and the rebound effect was discovered. Now, some neuros believe in the rebound others don't - they don't tell you this is their opinion but the issue is controversial. I do agree this exposes to them to less legal issues than recommending HSCT but incorrect information is being provided about HSCT, including in this blog in some entries. The side effects v benefits of HSCT cannot be discussed without noting that there are two types of HSCT - myeloablative and non myeloablative and some other in between protocols developed by overseas third country clinics. the fact that no one protocol has been proven superior to another is not a reason to not have that discussion in an article about HSCT. I'm disappointed with this one.

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    1. Look on youtube and there are many examples or people in doing better eg after ccsvi.

      if hsct has bad skde effects explain what they are infection and sometimes death is one. The risk from infection is the major concern once you white cells return then that risk subsides.

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    2. There was nothing but fluff in the panorama. Prof Sharrack had no control of the content of the programme but did email ProfG to say

      "I liked what Paul, one of the patients, said about the procedure being worse than having a fight with Mike Tyson!"

      Maybe if we had the UK data of adverse events from HSCT procedures done under the NHS within the UK, then people can make an informed choice.
      I am sure the data is there to be mined. I will post it if someone has verified source.

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    3. I have looked at the CCSVI phemonmenon to compare with it with the HSCT hype. The data is there to be mined (not just from the UK) and the risks depend on the type of HSCT chosen and protocols involved. One size does not fit all. Claiming otherwise is scare mongering. Ps. my partner had non myeloablative HSCT, she can now pee, she has no balance or leg problems and she is very healthy. Even her neurologist is pleased, let alone her heamo. Sorry for the anecdotal story, but it has actually been documented in the data you are referring to be mined. We have been warned that my gf would return from the procedure in a body bag. Other people we met in the hospital had similar 'warnings' from their neuros. Every single is doing so well so far. If my gf continues to pee and walk for next 2 years we will be over the moon. So bringing CCSVI into this is manipulative and inaccurate.

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  4. my argument is not that the mode of symptom improvement necessarily differs between, for example, tysabri lemtrada or hsct. my argument is that the level of improvement is greater than that of lemtrada or tysabri, even if that's a conjecture at this stage for the lack of gold standard studies, but saying that the " Similar types of benefit can be seem with some of the other current DMT, when active disease is turned off." If I paid AUD$68k to buy my partner some kind of relief to her balance or her legs for a year, 2, 3, 4 god forbid 5, i feel it was a money we didn't have well spent. the tysabri did nothing for her that hsct did. i'm angry that i had to pay $68k to achieve this, even if I was willing to pay it, given that her treatment and recovery this far have been easier on her and allowed her to lead a more normal life than she had on tysabri. she chose against lemtrada because of the autoimmune issue.

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    1. A number of neuros have said "similar types have improvement can be seen"
      end of story as far as I am concerned. I am not saying HSCT isnot very good either

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    2. MouseDoctorFriday, January 22, 2016 8:42:00 am I understanding that you are seriously saying "a number of neuros have said "similar types have improvement can be seen end of story as far as I am concerned."

      Forget HSCT, what kind of a research argument or attitude is that? I hope I misunderstood.

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  5. I have seen many improvements since starting Tysabri in dec '14. Just today I saw the force awakens, didn't have to take a bathroom break. However I remember during the attack of the clones my girlfriend at the time complaining that I had to visit the toilet.

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    1. I know people for whom Tysabri was gold. It caused my gf reoccurring infections she didn't have before tysabri. It improved the pins in her legs by about 10%. No one here is dissing Tysabri. Just free choice and scare mongering clinicians who don't devote enough time learning about something outside their expertise but that could be helpful (and not a killer) to their patients.

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  6. Here in the USA the FDA has actually put out warnings because of "cottage" Transplant operations springing up. The danger is of course real. If someone is going to undergo such procedures really needs to be in a professional environment that has been properly vetted etc. Plus lots of snake oils salesman.

    Just do a google search "Stem cells FDA warn"

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  7. The good news is excellent research is being done and the FDA here in the colonies wants it fast tracked.

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    Replies
    1. LOL. The projected date for approval if everything goes well is 2022.

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  8. Is this available on the internet for viewing? I don't live in the UK and interested in watching...

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    1. Unless you have a UK IP address you will be blocked unless you can find a VSPN to give you a gateway.

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  9. One problem I can see is that the HSCT procedure does not regenerate a new immune system, but relies on memory cells that survive the chemotherapy. Yes, it does not completely eliminate your immune system.

    There is a phenomena that is known as "thymic involution" which means that as you age your immune system is no longer regenerated but relies on memory cells. It is reasoned that this is why thing like cancer become prevelant with age.

    How will this effect people who underent HSCT? Probably not a factor in the short term but we will have to see if they all get cancer in old age.

    Here is a paper that describes thymic involution:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3415577/

    And here is a graphic showing how a healthy persons immune system functions over time:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3415577/figure/F1/

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    1. What is known about long-term effects of HSCT from its applications in cancer treatment?

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    2. This relates to cancer treatment:

      "Advances in transplantation techniques and supportive care strategies have resulted in a significant
      improvement in survival of those who have undergone treatment. However, hematopoietic stem
      cell transplantation (HSCT) survivors are at risk of developing long-term complications, such as
      endocrinopathies, musculoskeletal disorders, cardiopulmonary compromise and subsequent
      malignancies. These complications have a direct impact on the morbidity and mortality
      experienced by HSCT survivors. Two-thirds of HSCT survivors develop at least one chronic
      health condition; while a fifth develop severe or life-threatening conditions. HSCT patients who
      have survived for at least 5 years post-transplantation are at a fourfold to ninefold increased risk of
      late mortality for as long as 30 years from HSCT, producing an estimated 30% lower life
      expectancy compared with the general population. The high burden of morbidity experienced by
      HSCT survivors makes it critically important that there is standardized follow-up of HSCT
      survivors at high risk for post-HSCT complications. The Center for International Blood and
      Marrow Transplant Research/European Group for Blood and Marrow Transplantation/American
      Society for Blood and Marrow Transplantation and the Children’s Oncology Group long-term
      follow-up guidelines offer such standardized care. Future steps include wider dissemination and
      refinement of these guidelines."

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163085/

      Maybe some of the "lagard" neurologists have legitimate concerns about this in the longterm.

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  10. i suspect the laggards were too lazy to have read this:-)
    This interesting food for thought. We should be aware that the methods are changing over time so that used ages ago is not the same e.g irradiation

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    1. To the British which is more offensive, a laggard or a lemming?

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    2. i read this before it was raised here. Then I visited a leading Melbourne heamtologist who explained the differences between myeloablative and non myeloablative protocols and went so far to say that my gf won't die from the procedure she is having. Then I went home and read about the different chemotherapy protocols and their risks. The major risk with cyclosphomide is from memory ovarian cancer. Rituximab also has some risk but not over the moon. Those were the basis on which she decided on HSCT and on the type of HSCT. It shits me beyond belief that the medical profession thinks normal Joe Smith is unable to appreciate these differences and what is known and what is not known about HSCT. It is not for everyone, but it should be an option for more of those than it is available to. We couldn't be more pleased with my partner's progress to date, not a single side effect yet, though it's still early days.

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  11. I’m all for a sensible discussion around risks, but this is a truly ABSURD comparison…!

    This paper, as you rightly point out, relates to CANCER – i.e. patients suffering from the primary haematological malignancies:

    - Non-Hodgkin Lymphoma
    - Chronic Myelogenous Leukaemia (CML)
    - Acute Myeloid Leukaemia (AML)
    - Acute Lymphoblastic Leukaemia (ALL)
    - Severe Aplastic Anaemia

    The majority of the patients have undergone either high dose Total Body Irradiation or allogeneic transplants – and those who have not would have had very intense, multi-agent chemotherapy regimens, many-fold more than the reduced intensity conditioning used in single-agent non-myelo ablative HSCT for MS.

    You’ve taken some snippets and published them entirely out of context to fit your own narrative. Indeed, if you read the paper, it specifically calls out many of the risks as being linked to:

    - Bulsaphan (never used in non-myelo HSCT)
    - Chronic Graft vs Host Disease (not relevant to HSCT for MS, as the transplant is autologous rather than allogeneic)
    - Chronic lifelong immunosuppression to prevent donor graft rejection (entirely irrelevant to autologous HSCT as there is no donor graft to reject).
    - Anthracycline use (never used in non-myelo HSCT)
    - BEAM (or stronger) conditioning regime (non-myelo HSCT is a far gentler protocol)

    Further, let us not forget that all of these patients were suffering serious, life-threatening haematological malignancies such as lymphoma, and would already be at very high risk of secondary malignancy – which is well documented. Just take a look at the survival/recurrence rates for any of the diseases above (regardless of HSCT).

    As to life expectancy, are you REALLY comparing life expectancy of a cohort of patients with PRIMARY HAEMATOLOICAL MALIGNANCIES – many of whom have undergone ALLOGENEIC transplants with non-sibling matched donors and all of whom are recipients of high intensity chemo protocols (often plus Total Body Irradiation) versus the general population, and inferring that this should be applicable to low-intensity, single-agent non-myeloablative HSCT for MS?

    REALLY?!! Utter, utter drivel.

    Go and stand in the corner.

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    1. I can understand why you are so defensive. I would be to if I was in your situation but the question asked was "What is known about long-term effects of HSCT from its applications in cancer treatment?".

      As far as the longterm outcome of HSCT in MS I think the jury is still out. People with cooler heads may take a wait and see approach.

      Delete
    2. I asked the original question, and I appreciate the answer with the cancer reference. I also appreciate MD's comment and Matt's detailed analysis of substantial differences in HSCT protocols for treating leukemias vs. treating MS. This discussion is helpful for MSers (such as myself) who may need to make an informative decision about risks and benefits of HSCT. Thank you all contributors.

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    3. AnonymousTuesday, January 19, 2016 10:59:00 pm I doubt very much Matt is defensive, just tired of the same old dribble that uses 2007 statistics to argue against a treatment that has been refined between then and 2016. anyway, it is your right and sound judgment to take the wait and see approach. it is not the right and sound judgment of a clinician to claim HSCT mortality rate is 1.5% when there are different types of HSCT with vastly different mortality rates, one of which is non myleloablative HSCT whose mortality rate has been estimated at between 0.3 and o.5% overall as a generalisation. that's a far cry from 1.5% mortality rate. it is true, infection, particularly in the early days is common. out of the cohort my partner underwent hsct with (8, 1 had an infection that took half a week to resolve with intensive antibiotics. she is now doing well. another ended up with an infection on her return to australia and is now doing well after intensive antibiotics and a week in hospital. both were traumatic experiences.

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    4. The subject in this discussion is not the mortality rate at the time of the procedure it is what is the longterm outcome of HSCT for MS.

      The HSCT chearleaders keep stating that you cannot compare the HSCT results performed for cancer with that of HSCT used for MS. I agree. However the chearleaders cannot extrapolate the immediate mortality and morbidity rates post MS procedure to longterm outcome.

      No one knows what the longterm outcome.

      By the way the cancer paper written above was published in 2011 and does cover autologous as well as allogenic HSCT for cancer and not just total body irradiation. Is this valid for HSCT? Perhaps not but one thing it does point out is the need for long term follow-up and monitoring and I think this is recommended by all those performing the procedure in a trial setting.

      Having HSCT performed through overseas medical tourism might ignore this recommendation.

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    5. Clearly there are risks to non-myeloablative HSCT. Nobody is denying that.

      There is a fatality risk through infection in the short term – albeit relatively low in experienced centres. And there are – again, relatively low probability, but potentially serious - late risks to consider too (this is chemo, after all), which I guess one has to weigh up against their short and long term MS disease course, and the corresponding efficacy of this treatment approach to putting the brakes on progression/relapses/MRI activity. Everyone has to decide where on the spectrum of treatment they feel most comfortable. That’s a very personal decision, and there is no right or wrong answer. It is about individual choice with patients going into it (should they so choose) with their eyes open.

      It is a great shame, however, that certain individuals – with their own agenda - frequently obstruct a sensible, fact-based discussion around HSCT on this forum by posting ill-informed, scare-mongering and sensationalist nonsense – which may lead people into making decisions based not upon fact nor reality, but rather upon nonsensical rubbish (as per the link and accompanying “summary” posted above). I don’t think this represents “cool-headed” thinking, or that this type of misdirection is at all healthy, and I’m passionate about calling it out when I see it. If you feel that is defensive, so be it. I personally consider it simply calling out bullsh*t for what it is.

      The original poster’s question was asking about what is known about the late effects of HSCT in cancer. However, given the broader context of this discussion, it seems reasonable to assume that their interest in HSCT for cancer relates to the particular (or at least remotely similar) HSCT protocol to that administered in the BBC programme.

      HSCT is a procedure whereby your immune system is heavily suppressed, and then revived using haematopoietic stem cells, extracted and frozen prior, with the goal of regenerating a healthy, disease-free immune system. However, it is very important to understand that “HSCT” describes a process, not a single treatment protocol. Rather, there is a huge spectrum - varying massively in intensity and associated risk.

      So to present an out-of-context summary of stats based upon a cohort of, for example, non-sibling matched allogeneic myeloablative HSCT patients who have undergone TBI for a haematological malignancy (some of whom have already received chemo and/or previous malignancies prior), and thereby infer that these can in any way be used to draw conclusions as to the risks of the low-intensity non-myelo autologous HSCT we’re talking about here is, at best, foolish - if not intentionally disingenuous. You are (deliberately) comparing apples with pears.

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    6. I think the person who asked what are the effects of HSCT for use in cancer treatment is intellect enough to know the this is not what is used fit MS.

      It seems that anything that even downgrades your view of HSCT
      is "bullshit".

      As a suggestion maybe you should spend your time on the HSCT Facebook pages so that you can re-enforce your sense of superiority on the subject of HSCT.

      Reality is probably not something you are interested in. For the rest of us as well as the established HSCT research community the studies will continue and be digested.

      This is not a place to promote medical tourism.

      Delete
    7. Ah - the troll is back. How I’ve missed you. On the bright side, I guess everyone needs a nemesis…

      1. “This is not a place to promote medical tourism.”
      - Correction: I’ve questioned the relevance/pointed out the obvious flaws in a summary you’ve posted. At no point in this conversation have I promoted or even so much as mentioned medical tourism or overseas treatment. More nonsense/trolling (your speciality).

      2. “It seems that anything that even downgrades your view of HSCT is ‘bullshit’.”
      – You misunderstand. Your post does not “downgrade” my view of HSCT for MS – it bears neither close resemblance nor relevance to the protocol used in MS, which is exactly the point. I just called you out on it. Sorry if the truth deflates your ego (P.S. not sorry).

      3 .“As a suggestion maybe you should spend your time on the HSCT Facebook pages so that you can re-enforce your sense of superiority on the subject of HSCT.”
      - Yawn. Have I ever referred you to anything on Facebook? No. Do you actually have any coherent argument against the points I’ve made? No. Do you have a history of posting nonsense on this forum? Yes. Ah well. Don’t let the facts get in the way of a good old trolling. That’s what (you) say. :)

      4. “For the rest of us as well as the established HSCT research community the studies will continue and be digested.”
      - Yeah. Just to clarify once again, that’s a study on high intensity myeloablative HSCT for patients with *haematological malignancies*, often with TBI, often with allo grafts. I look forward to your digested conclusions for non-myeloablative HSCT with reduced intensity conditioning for MS. Clue: TBI, allogeneic stem cells and GvHD does not apply. Read a book.

      Life lesson: If you want a debate where only your view counts and nobody can challenge the relevance/accuracy of your views, don’t post nonsense on a public internet forum.

      Until next time...
      Over and out.

      Delete
    8. Really all that was done was present a paper requesting what are the effects of HSCT when used with cancer. Nowhere was a connection made that this is what is used for MS. You instantly jumped to this conclusion.

      Since you've been here on this blog promoting how wonderful it is that you went to Russia for HSCT as a medical tourist and because you fly off the hook when something is not presented the way y I u want, I can only assume you work for the Moscow facility.

      So Matt (if that is your real name) it is pretty clear who the troll is. Why not find another place to drum up business?

      Delete
    9. The twisted logic of a spanner. Someone dared challenge your sensationalist claims? Must be the Russians... It's the only explanation! Think you need to up your meds.

      Here's two claims you've made today:

      1- [directly beneath your poorly qualified suggestion that HSCT reduces lifespan by 30%] - "Maybe some of the 'lagard' neurologists have legitimate concerns about this in the longterm"

      2- "Nowhere was a connection made that this is what is used for MS."

      Reconcile those two statements for me, will you?

      Righto - on that note, I'm off to count my roubles after a hard day of drumming up business for medical tourism and Moscow (without even once mentioning either). Skill.

      That was irony by the way - don't wet yourself.

      I look forward to debunking your next spurious post, 'Anonymous', if that is even your real name...

      Delete
    10. God these stupid fights are not only ridiculously boring. Get a life and lead your own instead of telling others what to do (this is not aimed at Mat).

      AnonymousWednesday, January 20, 2016 12:01:00 pm if the subject of this discussion is the lenght of efficacy of HSCT rather than its risk profile, then let me know the length of efficacy of Tysabri, Lemtrada, Copaxone and other approved MS medication? From my research there is very little data on this other than when one approved MS medication shows it's not working (new lesions or progression) ONLY then is change contemplated. How is that different to HSCT? If my partner shows further lesions after HSCT we will consider the next step which will most likely Lemtrada (lucky for her she has a very supportive neuro, after a long search). Lemtrada wasn't the first option because of it's secondary autoimmune issue (50% over 7 years with Lemtrada v. about 3% for HSCT protocol that didn't involve Lemtrada). My partner has not pushed her choice on others and neither have I - these are personal decisions. But the decisions can only be made with accurate information that does not include 1.5% mortality rate. If the mortality rate was 1.5% for the treatment my partner was ACTUALLY having and the prospects of success between 75 and 85% (she has early RRMS) for about 2 to 5 years she may not have made the choice she did. With a mortality rate of about 0.3% having the procedure which has had no death associated with the procedure for MS.

      I am all for discussion about HSCT because as there has been pointed out there is so much data to be mined. But these fights about people's medical treatment choices insinuating the other is dumb for choices they made is ridiculous.

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    11. LOL work for the Moscow facility. We recently returned from Moscow, which treats about 20 patients a month, half of which are Russians. 20 people petrified (particularly by doctors who told them they would die) undergoing a horrible procedure. Yup they definitively work for the Moscow facility. We get a 10% commission for each patient we sucessfuly refer and that's we go to great lengths to point out the published information on this and other websites does not necessarily match reality. That's why I'm going to the trouble of writing all this, not because my gf can now piss, walk without balance issue and without 24 hr pins and needles. No idea how long this will last for, but even 2 years would be heaven.

      Delete
    12. Matt - if i were you I wouldn't even bother wasting time responding to this someone (Anon of Jan 20 at 10.01pm)who is clearly now just resorting to petty insults to try and stir the pot.

      Delete
    13. Now that people have said their piece can we please keep it civil otherwise we will turn off the comments

      Thanks

      Delete
  12. I guess Matt's point is that is like comparing the current MAB drugs (Alemtuzumab, Natalizumab) use in cancer (higher dose) to their use in MS. It's not a relevant or fair comparison. But the problem is when people read items like this they assume the % risk is the same for MS.
    MD - do you ever compare Clabridine risks when used for cancer as when used for MS?
    It is worth pointing out that using a lower does for MS may have other risks, e.g the risk of thyroid issues for Alemtuzumab is c. 50%, for cancer (higher dose) it is negligible. So lower dose doesn't mean safer, but it's relevant and published relevant information

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    1. "We observed pre-malignant/malignant conditions in 10% of patients." This is from Willis, et al. reporting a mean follow-up of just over 6 years with Alemtuzumab in pwMS (Mult Scler 2015). As you would imagine we're looking left, right and centre for cancers in people treated with Cladribine. The longest follow-up (20 years) of 88 people diagnosed with hairy cell leukemia before the age of 40 treated with Cladribine, no increase in the incidence of secondary malignancies was detected (Rosenberg, et al. Blood 2014;123:177–183). Also check: http://multiple-sclerosis-research.blogspot.com/2015/10/cladribine-and-risk-of-cancer-in-people.html

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    2. i personally think the autoimmune risk from alemtuzumab is ms related. it does not pccur in the same incidence in cancer as ms. my view is that people with ms are predisposed to autoimmunity and tue mechanisms of action meams that this happens compared to cladribine. Does autoimmunity occur in MS apparently it can but th

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    3. but the source i have is here say if you know of a published source where it happens independent of alemtuzumab i would be intrrested

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    4. If MSers are pre-disposed to secondary autoimmunity you'd think it would show up in things like HSCT as well. Of course we really don't know if this is the case as HSCT has had very few trials.

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    5. Apparently it has shown up but with low incidence, but I disagree that it has to show up the same in HSCT. This is because the autoimmunity I believe is inherent in how alemtuzumab works and the cells it depletes and the cells it doesnt deplete and the timing of the depletion are important for this, in HSCT there are other drugs in the mix. When the paper arrives I will explain my position.

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    6. People are running a mile from Alemtuzumab because of secondary Autoimmunities but they are occurring in the HSCT including people who have not had alemtuzumab.

      This includes ITP. People treated with Alemtuzumab are screened every month to detect this for up to 4 years after their treatment. Is this occurring following HSCT? Certainly the people doing health tourism are not getting follow-up treatment from their treating physician. I people are not been tested is there a risk of dying needlessly because of this.

      Immune-mediated thrombocytopenia (ITP) developed in 3 of 22 (14%; 95% CI, 3%-35%) patients treated with alemtuzumab compared with 4 of 129 (3.1%; 95% CI, 0.9%-7.8%) patients treated with antithymocyte globulin (P = .07). Drug-free remission of ITP occurred in all cases after transient treatment with corticosteroids and intravenous immunoglobulin or rituximab.

      Hypothyroidism was present in 9 patients (6.2%; 95% CI, 2.9%-11.4%) before receiving HSCT. After transplant, 7 additional patients developed hypothyroidism or hyperthyroidism. For patients with normal thyroid function before HSCT, thyroid dysfunction developed posttransplant in 2 of 20 treated with alemtuzumab (9%; 95% CI, 1%-32%) and 5 of 122 treated with antithymocyte globulin (4.0%; 95% CI, 1.3%-9.3%) (P = .26). The incidence rate of posttransplant immune dysfunction (ITP, hypothyroidism, or hyperthyroidism) was 22.7% (95% CI, 7.8%-45.4%) in 5 of 22 patients receiving alemtuzumab compared with 6.9% (95% CI, 3.2%-12.7%) in 9 of 129 patients receiving antithymocyte globulin (P = .03).

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    7. Yes, secondary autoimmunity is a concern as well as many other issues in the longterm:

      http://www.nature.com/pr/journal/v71/n4-2/full/pr201157a.html

      I guess if the medical tourist survive the procedure maybe they think it's all good, unless you look hard at what can happen. If the doctor's are not on board in the country where you live you may not get sufficient follow-up. I Imagine your health insurance will give you a hard time as well trying to get monitoring also.

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    8. MouseDoctorThursday, January 21, 2016 2:33:00 pm that people are not receiving appropriate follow up treatment on return to their home country is a failure of either those patients and their lax approach or the particular country's system. on my partner's return, she is receiving neuro and haemo support, monthly bloods, including for autoimmune. this will continue for as long as she requests them or for 5 years if she doesn't request more. her neuro would have no hesitation at all with the same approach. my partner has seen her neuro once since return in december and her haemo twice. it is possible for 'medical tourism' recipients to receive f/up support at home with support konwledgable doctors IF they can manage to find such doctors.

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    9. I am not saying that people are not getting the approiate follow-up, it is is simply important that people think that with an ITP risk they need follow up and we have some of our our medical tourists.

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    10. MD1 – All fair points. For sure, there are HSCT patients who develop autoimmunity (including ITP). Anyone planning on being treated overseas should ensure they have suitable follow-up care in place back at home, as a necessity. If they don’t, that would be a serious concern.

      Moving on to Anon...

      Just to recap, we’re talking specifically about non-myelo autologous HSCT here. Again, your link re complications refers to all manner of HSCT protocols (allogeneic, autologous, myeloablative and non, TBI, etc.). But then, you know this already.

      I imagine if someone asked you about the dangers of undergoing an X-Ray for a broken arm, you’d likely refer them to something like the link below. I get it now; That’s just the way you roll.

      https://www.chernobyl-tour.com/about_radiation_en.html

      I’m really not clear why you have self-appointed yourself the spokesperson for what “medical tourists” (and often overseas doctors) think and say – given that we’ve clearly established you’ve zero experience of either. The most valid words in your post are “I guess” – because that is exactly what you’re doing – and regretfully your guesswork is consistently woeful.

      Bringing this conversation back from the land of the fairies and into the real world for a moment…

      Any competent GP in the UK will refer you to a haematologist for follow-up to chemotherapy if required – whether it was undertaken in the UK, overseas, or in outer space. That is their duty of care. You may not like it, but it is fact.

      This is in much the same way that if you break your leg on holiday in Spain, they don't tell you when you get home that you're on your own as the injury didn't occur in this country. Yes - even if it was your own fault that you broke your leg!

      It is also true that any haemo/oncologist in the UK will be extremely well-versed in how to manage the follow-up of an HSCT patient. This is what they do every day of their working lives.

      In my personal experience, all of the above (and the risks of the therapy) were made crystal clear by the treating doctor overseas, who provided a pack of my medical notes/treatment protocol/recommendation (in English) to pass back to my haematologist in the UK, along with his personal mobile number and email address, should they wish to speak with him directly.

      I fully appreciate this doesn't fit with your xenophobic narrative that all doctors outside of the UK are lasso-carrying cowboys, trained in their local back-alley, who are happy to butcher you in exchange for a tenner in their back pocket – but, just occasionally, it’s healthy to burst your little bubble with a dose of reality.

      Hopefully, that puts an end to your baseless speculation on the matter.

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  13. I trust the Russians have stopped using Polonium 210 as a myeloablative agent?
    Just joking folks, the long-awaited Livinenko murder report is issued today in the UK.
    As MD says upthread lets all calm down and keep things civil otherwise we'll turn off comments.

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