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Colleen Displaced

one ordinary woman -vs- Multiple Sclerosis

Scam scam

February 19, 2017

I have something to say.  About our trip to Russia, about the HSCT treatment I’m having. 

HSCT is not a scam.

HSCT is an approved, currently in use treatment.  But it is used for cancer, and clinical trials exploring viability of HSCT for MS are taking a ridiculously long time to reach their conclusion in Australia. 

While the results seen around the world are more than encouraging, people with MS do not have the luxury of time to wait for trials to run their course.  MS is a progressive disease, and people with MS will deteriorate if they wait.  And so, many are selling their homes, downsizing, cashing in superannuation, crowdfunding or borrowing to travel overseas for HSCT.  If you have Multiple Sclerosis, Australia is NOT the lucky country.

I’m not an expert, so I won’t be quoting exact figures or anything, I didn’t research all this to win any award, I just wanted to know if I could improve my health.

The problem is that HSCT stands for Haematopoietic Stem Cell Transplant – and once there are the words ‘stem cell’, it seems that people tend to think ‘scam’.

Fair enough.  I was suspicious too.  That’s why I researched HSCT for over a year.

And as a result I can tell you there ARE stem cell scams out there targeting people with MS.  There ARE  people who HAVE been cheated by these scammers.  These scams can be  identified by the fact that they do NOT involve chemotherapy, they are stem cell transplants ONLY and do not produce the action required to attack MS.

HSCT – despite what it stands for, is more specifically chemotherapy for Multiple Sclerosis.  A part of the HSCT procedure involves stem cells being taken from the patient, treated, and returned to the patient to assist in rebuilding the immune system, but the stem cells are more of a ‘back-up’, and help speed up recovery.  Basically in HSCT the chemotherapy destroys the immune system, and to help it recover the treated stem cells are reintroduced.

So, HSCT is chemotherapy.  But chemotherapy is for cancer, right?

That’s exactly right! but somewhere around 15 years ago it was found that people undergoing chemotherapy for leukaemia, who also were unfortunately struggling with Multiple Sclerosis (MS) – not only saw their leukaemia go into remission but incredibly, the symptoms of their MS disappeared.

In time, clinical trials using HSCT for MS began - these trials remain under way in the US, Australia and elsewhere, while in many other countries HSCT has been accepted as a viable treatment against MS (including Russia of course). 

Some time ago when talking with my (previous) neurologist generally about MS research and treatments on the horizon, he mentioned chemotherapy, but in reference to another MS patient who’d had chemotherapy for breast cancer.  That patient was secondary progressive stage MS (the same as me now) and after undergoing and recovering from chemotherapy had regained full mobility and was running marathons.  Of course I said ‘well give me chemotherapy’ and the response was a wry smile and something along the lines of ‘we can’t just go doing chemotherapy’.  I am no expert, but I recall from that conversation hearing that the chemotherapy ‘had to be a certain type’ and that chemotherapy was able to cross the ‘blood/brain barrier’ – which I think is seen as the ‘holy grail’ in finding the cure for MS. That conversation took place a few years before I stumbled across HSCT and the stories of Australians travelling overseas for treatment.    I had no reason to doubt my neurologist’s story, and ultimately it substantiated what I was to later learn about HSCT.

Having said all that, I am not fanciful, HSCT might not work for me, it doesn’t work so well for everybody.  MS is a confounding disease, different for every single person who has it, with certain non-negotiable characteristics that identify it.  With so many variables HSCT cannot always have such glowing results, but studies show that in around 70% of those treated there is symptom recovery to varying degrees, and for over 90% the disease process is stopped.  So there is no further deterioration.  And this is the prize I hope for, to at least not deteriorate further.

As a comparison, a drug nearing approval at the moment has shown 6% effectiveness (a reduction in relapses) when measured against placebo – and that drug is soon going to be approved for people with MS.  6%?  I see that as a FAIL.  There’s something very wrong here, but that’s a whole other argument …

Now, thank you for caring enough to read this, if you could add a comment I’d really appreciate hearing from you and knowing that you did get this far!  Of course that’ll do nothing but make me feel worth your time (but you know how wonderful that ‘worthwhile’ feeling is) – actually, earlier this week there was Random Act of Kindness Day (17 February) … surely a little kindness any other day will feel just as good! - and I will reply to all genuine comments :)

One last thing, if you haven’t already watched the Today Tonight video and still are in doubt – please visit my crowdfunding campaign, it’s the first video shown on the opening page, I really think the few minutes watching it will remove any doubt.

All for now, and I do hope you are soon on the receiving end of a random act of kindness - let me know if that does happen, spread it round! - thank you and come back soon !

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