I came across a video of a lecture about HSCT for MS professionals, so thought I’d share it with you in case anyone is interested. It explains the process and discusses the development of treatment protocols over time. Although HSCT has been happening for several years, large scale studies and sharing of information has been slow to progress. Various protocols have been tried and compared and this has increased safety of the treatment.
The protocol used in Russia (and in the UK and Mexico) is the safest of the three referenced here.
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Gogglebox star and fellow MSer, Scott McCormick is currently receiving HSCT at Hammersmith hospital. He is sharing his progress via twitter (@ goggle_beard) and through a video diary he is making for the charity MS:UK (available on YouTube). Scott has had his stem cells harvested and is soon to begin the chemotherapy part of the treatment.
Like many MSers who have HSCT, Scott is keen to spread the word about the treatment. He recently dyed his trademark beard purple for MS:UK!
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Today was my first weigh in following a week on my new diet plan and I’m overjoyed to report I have lost 7 pounds! I am no longer obese …I’ve never been happier to be classified as overweight!
Thank you to all the lovely people who have been in touch recently to check I’m ok. I must admit that the last few months have been hard and I’m mostly feeling quite relieved about delaying my trip to Russia for treatment. I think I am suffering from fundraising fatigue at the moment! …my team of helpers too. So I’m having a little bit of a break from it for now (although still selling things online) and hope to be back on track in a few week’s time.
As mentioned before, I am struggling a little with fatigue at the moment. This is a largely invisible symptom of MS, but experienced by many and is, in fact, the most common reason that pwMS find they have to give up work. I reduced my working hours to four days per week in January and apart from adjusting to the reduced income, I have found this to be a huge help.
Another symptom I am becoming more aware of is “brain fog”. Many MSers experience this and it’s something we all dread. Sometimes I struggle to find the word I am looking for and I’m aware of sometimes feeling, well, a bit foggy! I am very much aware that my ability to concentrate is not what it was. I have always been an avid reader but haven’t managed to read a book for a long time. This is partly because I’m busy and tired, but also because of poor concentration. I can’t tell you how much this saddens me – reading is everything – escapism, broadening the mind, gaining knowledge and understanding, sharing information, to name but a few. I so hope that my concentration returns once I’ve had HSCT, in fact, of all my symptoms, it’s the one that worries me the most.
A few years ago I gained a place on a Masters degree course at Manchester University. I very much believe in life long learning and think we are never to old to learn and achieve. I had to withdraw from the Masters course, as my MS took hold and know it would be beyond me now. Recently an opportunity to complete a post graduate qualification linked to the education of looked after children (children in care) arose at work – the old me would have jumped at this.
I’ve been trying to understand a little more about MS fatigue and brain fog and it seems that the cause of both is the efforts the brain is making to bypass areas of inflammation. We are blessed with brains that can adapt to small changes and work out new neural pathways in order to keep functioning. This uses a lot of energy and “brain power”, so the downside is brain fog and fatigue.
In my efforts to learn all I can about MS, I follow a number of fellow MSers and eminent neurologists online. In fact, I have learnt more by doing this than I have from my own neurologist and MS Nurse! One of those I follow is Dr Aaron Boster, Neuro-immunologist from Ohio, USA. Dr B (as many of his followers call him) believes that when someone has MS, their whole village has MS. The village is the family and friends of the person with the MS diagnosis. He believes that it is important for pwMS and other village members to learn about MS, as this can empower the MSer to “be the most awesome version of themselves they can possibly be”.
In one of his many MS education videos, Dr B describes a piece of research that involved asking people to perform a simple finger movement whilst their brains were scanned for activity.
For people without MS, one specific area of the brain lit up when the person moved their finger. When people with MS were scanned, it was found that several areas of their brains lit up when performing the same movement. This is thought to be due to the brain responding to areas of inflammation and damage, by “re-wiring” and using new areas of the brain in order to retain this functionality. If you imagine this happening multiple times, for all the complex movements and functions of the body, it is easy to see how hard the brain is working and to understand why fatigue and brain fog become an issue.
Two years ago, I didn’t have any visible disease activity in my brain, (on MRI) but my last three scans have shown new “white spots” (areas of disease activity) in my brain which have increased in size and number at each scan.
So, this why I need HSCT now! The disease activity in my brain is fairly new, so there is a greater chance of it being improved by HSCT. My hope is to stop the disease in its tracks and prevent further inflammation in my brain, let my neural pathways settle, stop feeling tired and foggy and start reading again! Maybe even manage some further study one day.
This is just a brief post to let you all know that we have made the difficult decision to delay my trip to Russia for HSCT.
There are several reasons why we came to this decision, amongst others is the fact that we are still quite a way short of of our fund raising total. We have a few events coming up, so hope to make the most of those and increase our total over the coming months.
It’s been a difficult week or so, talking this through with family and friends, but I think we have made the right decision. I have been in touch with the clinic and they have been very understanding – I hope to have a new date in place very soon.
I’ve been feeling a bit down about this for a day or two but feeling much brighter now. A bit of a bonus to this delay is that the timing now works really well with my job. I work as part of the team who support and promote the educational outcomes of children who are in care. As you can imagine, many of our children have experienced difficulties in their lives, which disadvantage them in education and in life in general. We do all we can to support these children to overcome this disadvantage and to reach their potential. As you can imagine, it is hard not to become involved and to care what happens to them. In education, the Summer term is really important, with phonics screening, SATs test, Functional Skills exams and GCSEs. I have several year 11s and it will be good to now see them through their exams and know what their plans are for next year. I’ve also started working with nursery age children and look forward to some of them moving on to primary school. It will be so good to see them all through to the end of the school year.
So, I’m doing my best to stay positive and focussed and also to remain patient!
Before making the decision to pursue HSCT, I spent a lot of time reading and researching MS and available treatments so that I felt able to make an informed decision about how I wished to take on the disease. Others have engaged in this research and reached a different decision about what is best for them. I very much believe that it is important that patients are involved in the decision making in relation to their treatment and care.
Whilst learning about MS, I came across a blog written by two eminent neurologists from St Bartholomew’s Hospital in London (known as Barts).
They discuss various aspects of MS treatment and research and often initiate a lot of online discussion, both in the comments section of the blog and elsewhere. Until recently, the blog authors were very cautious about advocating for HSCT as a possible first line treatment option, but there has been a noticeable shift in their thinking, particularly since the publication of the recent MIST trial outcomes.
Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients With Relapsing-Remitting Multiple Sclerosis January 15, 2019
This week, during a discussion on one of the blog posts, this response appeared …
A huge buzz went around the MS/HSCT world …here was a world renowned MS expert preferring HSCT, not as an eventual possible treatment, but as a first line treatment …hallelujah!!
A few days later, Professor Gavin Giovannoni (or Prof G, as he likes to be known) returned with a full explanation of his change of heart. Here are a few highlights from that post …
When asked on the blog yesterday which DMT would I choose if I had MS, I chose HSCT. One of my patients, who I have been looking after for over a decade, sent me an email stating how upset she was that I had never offered her HSCT. I clearly need to explain my position so as not to upset anyone else.
Firstly, HSCT is not on offer as a routine NHS therapy. At the moment HSCT is only considered as a 2nd or 3rd-line treatment in the most active patients. Another problem is that it is not on offer across the country. There are only a handful of MS centres that are prepared to refer their patients for HSCT. This means that access to HSCT is not equitable and explains why an increasing number of patients are having to travel abroad, at great personal cost, to receive this therapy. Inequity of care is against one of the founding principles of the NHS and is unacceptable.
The block in access to HSCT seems to be at the level of the neurologist/MSologist. […]
Another factor that has changed in the last 10 years is the strength of the evidence-base showing how effective HSCT really is as a treatment for MS. The most recent MIST trial, the first large randomised controlled trial, and several meta-analyses of HSCT, which have been extensively discussed on this blog, have confirmed that HSCT is a very effective therapy. […] […]
Please be aware that HSCT is not for the faint-hearted. It is a risky therapy with serious adverse events and quite a high mortality. Even a mortality rate of 0.3-0.5% is high when compared to other licensed DMTs. Should this stop us from offering HSCT first-line? I think not. If we are prepared to offer alemtuzumab, with its risk profile as a first-line treatment, why not HSCT? Most pwMS would agree that the decision regarding what is an acceptable risk to take should be taken by the patient and their families, and not the neurologist or other HCP. There is data showing that neurologists are much more risk-averse than pwMS. Neurologists need to acknowledge this bias, which is likely to be an unconscious bias, and let their patients make the decision. […]
Although Prof G shows some understanding of why many patients (like me) choose to travel abroad for HSCT, he later expresses his disapproval of that situation, as he feels that clinics in other countries will agree to treat all patients who are willing to pay, whether they are likely to benefit or not. Evidence from those clinics is that most pwMS are likely to benefit from HSCT in terms of halting the disease and many will experience improved symptoms. Patients for whom treatment may be dangerous are not treated at these clinics (people with severely impaired mobility or with concerning additional medical problems for example).
The full post and interesting subsequent discussion can be found here …
Slowly but surely, HSCT is becoming a mainstream area of discussion in the MS community. Many believe that it will become much more available as an NHS treatment option within the next few years. This leaves me and my fellow MSers with a difficult dilemma … I could wait and keep fighting the system, in the hope that I can one day access HSCT here. My big worry about doing that is that I don’t know whether I have time to wait. What if my MS progresses or I have a big relapse and become more disabled? What if my general health deteriorates as I get older, making treatment more risky? In addition, there is some evidence that HSCT is most likely to effective if given in the first few years after diagnosis and when the patient hasn’t already damaged their immune system by trying a series of conventional DMTs.
The more I read, the more certain I am that I am doing the right thing! I am fully aware of the risks involved in HSCT and of the long road to recovery, but I’m prepared to travel that road and the alternative – waiting to become sicker – is no longer worth considering.
I work for the VST as a TLC alongside some ESWs. We work with LAC (or CLA) and we are always ready to provide a quick response to NIC. I have particular responsibility for EY LAC and we have regular contact with professionals from CSC, SEN and BSS. Acronyms are everywhere!
The world of MS has them too, although most are FLA! I thought I’d share a post about some of the acronyms and vocabulary used in MS.
MS – Multiple Sclerosis
CIS – Clinically Isolated Syndrome: A single attack (or “Sclerosis”). Many with MS are diagnosed with this following their first attack or relapse. For some reason, I was initially diagnosed with two episodes of CIS (which seems somewhat contradictory to the meaning of the word “isolated”!).
RRMS – Relapsing Remitting Multiple Sclerosis: MS which is characterised by attacks or relapses alternating with periods of stability. Some neurologists argue that! with MS, there really is no period of remission, therefore using the word “Remitting” is misleading. I am currently recorded as having RRMS.
RMS – Relapsing MS: Being used by some neurologists instead of RRMS
PPMS – Primary Progressive MS: a presentation of MS characterised by continuous progression, with no relapses or periods of remission. 10-15% of new diagnoses of MS are of PPMS.
SPMS – Secondary Progressive MS: around 50-80% of those initially diagnosed with RRMS will become secondary progressive at a later stage. I recently asked my neurologist if I was secondary progressive and he replied “well, you’re certainly on your way there”.
https://youtu.be/CgQfI0ZFvoo
MRI – Magnetic Resonance Imaging: used to view the health of the brain and spinal cord to aid diagnosis and monitor progression of MS.
DMT / DMD – Disease Modifying Therapy / Disease Modifying Drug (These terms seem to be used interchangeably so I assume they have the same meaning)
NEDA – No Evidence of Disease Activity (what we’re all aiming for!)
HSCT – Haematopoietic Stem Cell Transplant
AHSCT – Autologous Haematopoietic Stem Cell Transplant: an Autologous Transplant is one in which the recipient’s own tissues are returned to the body. Allogenic describes transplants where tissue is donated by another. Allogenic Stem Cell Transplant is considered far too risky as a treatment for MS.
CNS – Central Nervous System: the brain and spinal cord
CSF – Cerebral Spinal Fluid: This is the fluid that surrounds the brain and spinal cord. CSF is extracted during a lumbar puncture (or spinal tap) and can be tested and examined in a number of ways. Most people diagnosed with MS have “Oligoclonal Bands” present in the CSF at a higher level than in the blood. I had a lumbar puncture in 2017 which identified the presence of oligoclonal bands and confirmed my MS diagnosis.
PwMS – People with MS
NICE – National Institute for Health and Care Excellence
EBV – Epstein-Barr Virus: A common virus that causes glandular fever. I have included this as there is growing evidence that exposure to EBV may be a contributing factor to developing Ms for some.
EDSS – Expanded Disability scaled Score: Used to measure disability in MS. A recent neurologist letter records my EDSS as 6, however I feel it is nearer 5.
This has been an exciting week in the world of MS and HSCT, as the final analysis of the MIST trial has been published in the Journal of American Medical Association (JAMA).
The trial compared the effectiveness of HSCT against a control group of patients who were given conventional Disease Modifying Therapies. The trial included patients treated at 4 centres across the world – Chicago, Uppsala (Sweden), Sheffield and São Paulo (Brazil).
The findings of the trial were that HSCT was more effective in terms of halting disease progression than any DMT.
As you can imagine, this has caused a huge ripple in the medical world and it is now estimated by some that HSCT as a treatment for MS could be FDA (US Food and Drug Administration) approved within 2 years.
“HSCT proved to be the more effective treatment: Of 55 patients receiving HSCT, only three patients showed disease progression at one year, the study showed. Yet, 34 of 55 patients in the disease-modifying therapy group showed disease progression at one year. Disease progression was measured using the Expanded Disability Status Scale, a method for monitoring changes in symptoms over time.
Among the HSCT group, the proportion of patients with disease progression was (roughly) 2% up to two years, 5% at three years, and 10% at 4 and 5 years. Meanwhile, the proportion of patients with no evidence of disease — defined as no progression, no relapses, and no new or enlarging lesions on MRI scans — was (nearly) 98% at one year, 93% at two years, 90% at three years, and 78% at four and five years.”
I am more determined than ever to get to Russia and have HSCT …it feels good to be part of this MS revolution.
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Since writing my previous post recording my current symptoms, I keep thinking of one’s I’ve left out. I’m going to add them to the list in italics.
After a couple of days feeling mentally and physically low, I am pleased to say I have bounced back and am now feeling much better.
I always struggle a little at this time of year. I don’t tend to celebrate the new year and haven’t been out on New years Eve for years. The last time I did was in 2004, just after the end of my marriage and it was a complete disaster, which seems to have scarred me for ever!
I now find it much easier to stay in and do a bit of wallowing on New Year’s Eve! I also try to do a bit of reflecting on the year that’s ending and think about what I hope for in the new year.
In some ways, it’s all bit easier this year, I have one aim … to have HSCT and to work hard to optimise my recovery. There is still a lot to do in order to get there …more fundraising, borrowing some money, arranging flights, visas and working out how all those offering to help can best support me. But, I feel so very sure that I’m doing the right thing and this will keep me going over the next few months.
Yesterday I went into town, something I rarely do (I hate shopping!) and it was a bit of a challenge. I only had a few shops to go to, but I struggled with walking so far and manoeuvring through the crowds. Ok Stockport really isn’t that crowded, but I have been avoiding busy places for a while, so it seemed crowded to me! I’m so sick of these limitations on my life – popping into town for a few bits is now a major operation!
Thankfully, I had planned to meet up with my friend Beth for coffee and cake, which was therapy as always …thank you Beth ?
Today I had brunch with Niamh, Rebecca, John and my gorgeous step-grandson, Albie …such a lovely way to start the day.
This evening I am watching TV, chatting to friends online, drinking gin and eating chocolate. My pyjamas are already on and it’s unlikely I’ll still be awake at midnight!
So, Happy New Year to everyone reading this. Thank you all for your support and kindness over the last year …it means such a lot to me. It’s been a tough year health wise, but over the last few months I have come to realise just how much good there is in the world and for that I am truly grateful xx
I was diagnosed with MS in June 2017. My most recent MRI scan around that time showed no new lesions or inflammation so my MS was described as “benign”.
I had a further MRI in November 2017 and then in May 2018. These both showed current inflammation and “enhancing lesions”. I had also developed several new symptoms. My MS was then redefined as Active RRMS.
RRMS = Relapsing Remitting MS.
At my most recent neurology appointment, I asked the consultant if he thought my MS was becoming progressive. He replied “well, you’re certainly on the way ”. Somewhere between 50 and 90% of the those with RRMS will become SPMS (Secondary Progressive MS).
Prior to my diagnosis in June 2017, I had had concerning symptoms on and off for about 7 years. In 2014 I was diagnosed with Clinically Isolated Syndrome and Transverse Myelitis.
There are various episodes and symptoms I can recall in the past, that I now recognise may have been neurological symptoms. It is possible that I have had MS for many years.
Is HSCT safe?
No treatment is 100% safe. Having said that, the safety record for HSCT is excellent and improving all the time. Interestingly, the two main clinics used by UK patient (in Mexico and in Russia) both have a far better safety record than the UK. I guess this is due to their experience and careful selection and testing of patients before treatment.
The most risky phase of HSCT is the period of time during which the patient’s immune system is virtually wiped out and before the stem cells have had a chance to begin rebuilding it. This is known as neutropenia. During this stage (about 7-10 days) patients remain in isolation with very strict protocols linked to hygiene, food etc. Patients are continually monitored by medical staff so that action can be taken at an early stage if any concerning symptoms arise. At this stage, an infection that would usually be of no concern, or easily fought off by the body, can lead to sepsis. Thankfully, this is very rare.
Why isn’t it available in the UK?
HSCT is available in the UK and is used widely all over the country to treat patients with Leukaemia and other blood / bone marrow cancers. Two hospitals in London have been treating MS patients for the last few years but as this is a very limited resource, there are very strict criteria in place in order to select patients. A handful of MS patienst have also been treated in Liverpool and Manchester and possibly other hospitals too (this information is not reported anywhere). Some MS patients have received HSCT in Sheffield as part of the MIST trial.
At present I don’t meet the criteria for HSCT on the NHS as I haven’t tried several DMDs. I don’t want to do this as it would take several years, my MS could progress, the drugs have serious long term side effects and there is some evidence that HSCT may be more effective for those who haven’t had multiple previous treatments affecting the immune system.
HSCT is a available privately in the UK, but the costs are much greater than the private clinics abroad.
Why Russia?
I have done a lot of research into the clinics where HSCT is available to international patients. There are several where the costs are beyond my reach and a few who will only treat residents of that particular country. In the end, the choice came down to either Russia or Mexico. Both have treated hundreds of MS patients, including many from the UK, both have an excellent record in terms of outcomes and patient safety and both have an excellent reputation in terms of patient care. In the end, I chose Russia because it is slightly cheaper, it is much nearer and there are some additional costs involved in going to Mexico (patients must bring their own carer or pay extra for this care).
At first I felt a bit anxious about this. Who has ever heard of anyone going to Russia for medical treatment?! But I have been reading and researching, following the journeys of others and even communicating with others whilst they are at the clinic having treatment! I feel confident in the decision I have made.
Will you lose your hair if you have HSCT?
Yes! Well, most people lose their hair due to the chemotherapy phase of the treatment. Obviously that’s not something I’m looking forward to, but if it halts my MS then it’s worth it. Perhaps I’ll wear a wig or maybe a series of snazzy hats! I’m sure I’ll cope.
Actually, I’m more worried about having no eyebrows …I think I’ll research microblading before I go!
I’d like to help but I’m skint!
I totally get this. We are all experiencing hard times at the moment and I know that money is tight for a lot of people. I would never want anyone to feel pressurised to donate …please only give what you can afford. If you can’t afford to give anything, that’s fine too.
There are a couple of other ways you can help…
Share this blog and our fundraising page with all your friends and encourage them to do the same.
If you or anyone you know is in a position to donate items that can be raffled or auctioned, these would be very gratefully received …unwanted Christmas gifts, tickets for events, meals, massages, haircuts etc etc
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Thank you all so much for your continued support and kind words. It really means a lot ?
I finally got to meet my new neurologist yesterday and to find out why I won’t be seeing the old one.It turns out that my previous neurologist has left the NHS, in fact, he has left the country and has returned to Malta! My political mind wonders if this was Brexit related …I guess we’ll never know.
So my new neurologist was doing an additional catch up clinic for those of us left without a neurologist.He was a nice man but the whole appointment felt a bit rushed and pointless. He wants me on another DMT, but didn’t ask how I felt about that and he wasn’t aware of my letter enquiring about HSCT.
I asked him about HSCT and he looked a little flustered then explained that he thought it was likely helpful for some patients, but that we need more large group, long term clinic trials to be clear on who it might help. He also said that there was a number of drugs left for me to try, before considering anything more drastic.
He briefly mentioned “people who fundraise or sell their homes” to pay for treatment abroad (not realising that I am on my way to being one of them) and made some strange claim about those patients claiming to have improvements or to have halted their MS, but him not being convinced it was true! He felt some improvements were psychological and linked to the fact that people have invested in the treatment and believed it would work.
I wasn’t quite sure what he meant by that (intensive chemo, followed by stem cell transplant, having a placebo effect??) but decided not to discuss it further or tell him I am planning to have HSCT myself.
I felt he was a nice man and clearly believes that current drugs are good for his patients.It wasn’t until I was on my way home that I realised he didn’t ask me how I am, about new symptoms, or, in fact, my views or experience of anything at all!
So, that’s it, my hopes of accessing HSCT in the UK are now over.I am now one of those MSers who is diagnosed, shoved on drugs and seen once a year for a review (during which no one will actually ask how I am!).
I felt quite down about this last night but am ready to fight on today.Being an advocate for your own health is something we should all do, whatever our ailment.Knowledge is power.Find out what you need, find out how to get it and don’t give up ??
I now need to get back to fundraising (and possibly borrowing) with a vengeance.I think I’ll buy a lottery ticket for this weekend’s draw! ??
On the plus side, the clinic in Moscow (as well as the one in Mexico) is infinitely more experienced in treating MS patients and has a much better safety record. I really will be in the hands of world experts and that feels good to me!
I also left the hospital armed with a bit of light reading!
