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#ClinicSpeak: managing unrealistic expectations in relation to HSCT

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We need a national debate about the use of HSCT to treat MS and we need to educate MSers about what to expect. #ClinicSpeak

I received an email from a colleague this week that stated:

"I saw a patient last week that I thought might be worth discussing on the blog. The patient had a self-funded AHSCT in Russia last year after doing badly on an injectable. She went into the transplant with the expectation she would be cured. A year after the transplant she has now developed a spinal cord relapse confirmed on MRI. To complicate matters her lymphocyte count is still around 0.8x10^9/L. She was absolutely devastated when I gave her the MRI results that the HSCT had not worked. It was worse for her than receiving the initial diagnosis of MS. I started my training initially in medical oncology. It reminded me of giving the news to young woman with breast cancer who had just finished six months of adjuvant chemo and at the end of treatment her scan showed new metastatic disease. This is not a situation I've encountered before but makes the point that although HSCT is a highly effective DMT, it is not a cure for MS as it is often sold to people travelling abroad to be treated."

I think it is important to realise that until we know the cause of MS and how it drives MS disease activity we won't be able to declare a victory over MS, i.e. say to someone that you have been cured. This is why I am always careful to use the term 'potential cure', simply because I am not 100% sure I know what causes MS. 

I get very upset when I hear stories such the one above. AHSCT is not a cure and a significant number of pwMS will relapse after having HSCT. NEDA rates at 3 years are about 75% and this figure will drop with time.

Please note there are a lot of Charlatans out there who promise pwMS a cure, take their money and are not around, or disappear, when the shit-hits-the-fan. To protect yourself you need to be careful. The following is a sensible information sheet that has been prepared by the MS Group in Bristol that explains what you need to do when exploring HSCT abroad.

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I actively discourage my patients from going abroad for HSCT, because it is risky, expensive and you need follow-up post-HSCT. This is one of the reasons why Barts-MS have started offering it to our patients in London, but we have strict guidelines governing its use. Please note that the NHS does cover the costs of HSCT and MS is specifically mentioned in the NICE guidelines for bone marrow transplantation. In addition NICE is in the process of generating MS-specific guidelines to cover HSCT for RRMS. In short there is no reason for you to travel abroad. 

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