Sunday, 14 May 2017

#ClinicSpeak: are you planning to go abroad for HSCT?

Health tourism is becoming increasingly popular amongst people with MS. Why? #ClinicSpeak #MSBlog #HSCT

As you are aware an increasing number of pwMS are going abroad to be treated with HSCT. The following patient information sheet has been kindly forwarded to me. If you are considering going abroad for HSCT you may find the information useful. 

20 comments:

  1. Replies
    1. Where is the advice to speak to a haemo - my partner's heamo has a nurse that spent 2 hrs with my partner and an extra hour with me to teach us how to keep her alive when she has no immune system at the airport (they had a book, in which the nurse wrote notes specific to my partner's situation and arrangements)? To arrange before and after care? To keep in touch with a neuro but not to the exclusion of a haemo - that it's an important relationship which needs to continue after HSCT? Where and how to get help if something goes wrong – on the plane or after returning?

      Or is that kind of advice not provided in order to avoid looking like one is condoning a treatment?

      I find it incomprehensible that until we asked for a referral to heamo, out of the 8 neuros we consulted at the time about HSCT: not single one (not even the two who engaged the discussion) said talk to me about the treatment efficacy for MS but make sure you have a haemo for after care, do you need a referral? It is equally incomprehensible to me that a one page document about Hematopioetic Stem Cell Transplant for MS has no mention of which specialty is needed for aftercare.

      What gives?

      Delete
    2. "Or is that kind of advice not provided in order to avoid looking like one is condoning a treatment?"

      Maybe. For example, say someone from the UK goes to Mexico for HSCT on their own initiative. When they get back to the UK, any problems they might develop as a result of this procedure have to be treated by the NHS. Given the current cash-strapped state of the NHS, the reluctance may be understandable.

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    3. Maybe. But I don't think NHS is the reason that MS patients electing to undergo HSCT overseas are not routinely being referred to haemos for aftercare.

      The problem is not unique to the UK and the Australian HSCT position statement doesn't mention haemos for after care either.

      It seems to my anecdotal eye that neuros and neuro organisations (BraMS, MRSA etc) do not routinely recommend that people who are thinking about or are going overseas for the procedure consult a haemo.

      Why?

      Delete
  2. PS When will you fix the issue I wrote a ten minute fix for in http://daves--raves.blogspot.com.au/2017/03/those-google-blog-emails.html?

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  3. Without even knowing what the acronym stands for, BRAMS just shits me.

    You better start explaining to people with progressive MS why ocrelizumab will help and hsct won't... good luck with that one.

    the clinical trials argument is 10 years old now, hasn't worked for the last 10 years so don't why it would work this time. besides which, they've been using rituximab in sweden for years without clinical trials and now the rest of the world is excited about ocrelizumab.

    the 'hsct will kill you' angle has been used for as long if not longer than the 'clinical trials' argument, and yes it may well kill you: speak to a haemologist who is an expert in these procedures, not a neurologist who at best has done 30 of them.

    All this crap has done is pit patients against their neuros. Patients can tell they are being herded and patients can tell when their neuros are trying to scare them: what does that do to the patient doctor relationship?

    The shitty thing is that hsct is a dangerous procedure with a potential for a lot to go wrong. You guys in the UK should know that - apparently you've had a few teething problems at the start which (if true and in my view) should have been avoided in a country which performs hsct for cancer every day of the year. People are now in India, dying from HSCT.

    When you talk to those who have chosen to go to Indida for progressive MS- there are 3 themes that come:

    1. They feel they couldn't afford to wait any longer (you know, the brain health document).

    2. They couldn't afford anything else (India is significantly cheaper than any other Centre, unsurprisingly).

    3. They've lost all trust in their neuro.

    My god.

    I wish these people from Mars called neurologists would learn to communicate as human beings with other human beings.

    ReplyDelete
    Replies
    1. Bristol & Avon Multiple Sclerosis Centre (BrAMS)

      Delete
    2. Neuros are not experts on HSCT - they are not haematologists. MS is an immune dysregulated disease that attacks the CNS yet neuros are not immunologists. I am not diminishing the field of neurology but when it comes to MS other areas of expertise need to be consulted.

      Delete
    3. Thanks lol.

      I'm a little sensitive after spending 5 years wearing bras on my head during breast cancer fund raising only to meet MS 6 years after the breast cancer.

      Delete
  4. lol my partner and her haemo now regularly joke about neuros' and their advice that 'one is going to die from hsct'.

    apparently, my partner wasn't the only one who consulted the haemo with a stricken look of panic on her face, asking him, 'am i really going to die from this? i know it's dangerous, but they keep telling me i'm going to come back on a ventilator'.

    the haemo rolls his eyes during the jokes and he ain't rolling them at us :)

    he also rolled his eyes when i mentioned neuros are now beginning to pay attention to b cells... about time he said while rolling them lol.

    ReplyDelete
    Replies
    1. Reminds me of lyrics from an old song

      "Go on and have a laugh
      Have a laugh on me
      Go on and have a laugh
      At all my misery..."

      I think it isn't intentional, just outside their realm of expertise.

      Delete
    2. "I think it isn't intentional, just outside their realm of expertise."

      Thanks for the song laugh lol.

      I agree, but what does it do for me?

      My partner didn't have HSCT because it was going to cure her. She had it because she elected to take the risk of HSCT over the risk of Lemtrada autoimmunity and because she didn't want to go to hospital monthly for Tysabri infusions. She had cancer for five years and had five years worth of monthly hospital infusion visits - for her, it was an insurmountable pressure.

      In those circumstances, the fact that they used every bit of their imagination to scare her and the fact that it wasn't intentional means little. At best the bulk of the advice my partner received from neuros differed significantly from that of her haemo.

      The conversations went like this:

      "We want to discuss HSCT. We know it's not a cure but it's a big hit with which she may be able to buy time until something better comes along. Her haemo says she is young, healthy, just diagnosed and without significant disability - he says if she is going to have it, better now than later'.

      'no hsct doesn't work for progressive ms'

      'she doesn't have progressive ms. she is now tysabri she was diagnosed with ppms before she was put on tysabri.'

      'hsct only works for people who have enhancing lesions'

      'she has an enhancing lesion - look you found one.'

      'oh, no it's only little'

      'neuro XYZ was worried about the lesion because it's close to her grey matter...'

      'hsct will kill you and won't work for progressive ms. you'll be in xyz country on a ventilator. do you really want that?' and 'hsct is great treatment for some people... but not in your case'

      why not?

      'because it will kill you. and you have to fail dmts first'

      'she has been on tysabri for 4 months. she is unhappy, she is having reactions and she doesn't it anyway. haemo says she is young and just diagnosed - he says it won't kill her.'

      'hsct doesn't work for progressive ms, it's dangerous and here, have tysabri instead.'

      In hindsight, I’ve had more productive conversations with the walls inside my house.

      Delete
  5. "Substantial improvements can occur spontaneously after a relapse". The spontaneous improvements that occur in the natural course of MS is one of the reasons that makes my decision not to go on any treatment at all, very hard for me. I had a horrible 2 year period while being diagnosed which knocked me out of the workforce but then 3 years (until now) of good health (as well as stable MRIs and no brain atrophy). I don't get sick with infections and don't have side effects of treatments and so I think what if I had gone on treatment early on and the drs looked at me now and said, yes that treatment is helping you, when it was just the spontaneous improvements. So hard for me to believe what is what.

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    Replies
    1. i've heard many stories like yours. i don't offer an opinion on what is right for any individual person.

      but your story reminds me of the problem neuros face (cos it's all about their problems really lol): they know so very little - despite dealing with MS for the duration of their professional lives (however long those are for individual practitioners), they know so very little about the disease and about the disease in an individual person.

      they seem to have a lot of trouble with their lack of knowledge and most deflect instead of deal with the scientific knowledge gaps. they don't know how to communicate very well, so they resort to bullying and herding to influence their patients' decisions.

      Delete
  6. Can neurologists get anymore patronising than this? Do they think we are fools and unlike them are unable to make a judgement call on the risks and benefits of HSCT?

    ReplyDelete
    Replies
    1. No. Some of them are unable to substantiate their own arguments and it frustrates them, so they take it out on you.

      Think about your own workplace - past or current - those pesky demanding clients who want the world. Sometimes people feel hard by when people demand things from them, particularly when they feel people are demanding answers that you don't have.

      Why would you want your MRIs? Do you not trust me and my medical opinion? What a demanding picky pain you are.

      Delete
    2. lol yes that's exactly what they think. haven't they told you about the ccsvi phenomenon?

      i guarantee you (now in hindsight) that when i consulted 8 of them in 2015 about hsct, i had read more published papers on hsct then at least 5 of the neuros offering their advice. the 6th neuro was an expert in 2000, but had not been involved in the procedure since that time lol (i found out through creative research, he didn't offer that piece of advice). 2 of them engaged in discussion. we drove 800km to see one of those 2 and stumbled on the other by accident.

      the accidental find? a friend with ms was chasing lemtrada. she was knocked back by 3 of the same neuros we consulted about hsct. eventually she found her lemtrada hero and he has turned out to be wonderful in areas other than lemtrada as well.

      i feel like this ms neurology world is a nightmare i can't wake up from. i'm not talking about ms, i'm talking about ms neurologists lol

      Delete
  7. EBMT May 2015
    General
    information for patients, familiesand carers considering Haematopoietic Stem Cell
    Transplantation (HSCT) for a severe autoimmune disease (AD)
    :
    A position statement from the EBMT Working Party for Autoimmune Diseases and JACIE

    https://www.ebmt.org/Contents/Research/TheWorkingParties/ADWP/Documents/ADWP%20website%20information%20for%20patients_VF.pdf

    ReplyDelete

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