HSCT – Page 3 – Another MS Warrior

51 A bit more about HSCT

In my quest to find out more about HSCT and decide whether it is the right option for me, I have spent a lot of time reading accounts of other people’s experiences.

Thankfully there are many people who have shared their experiences of treatment and their recovery through blogs, videos, Facebook pages and discussions in online support groups.

There are a couple of recurring themes I have come across. In terms of halting MS and improving symptoms, there seems to be a wide range of outcomes – from huge life changing improvements to very little change at all. The vast majority see the progression of their disease stopped and it is important to remember that this is the aim of the treatment. HSCT doesn’t “cure” MS but there’s a good chance it can put it in remission. At the moment, this would be a dream come true for me!

For a few people, the disease isn’t stopped by HSCT and their MS progression continues. Despite this, I have come across very few people who regret having HSCT and a very rare one or two who are thinking of having HSCT for a second time!

I think, because it feels as if MS has taken control of your life, it can feel empowering to be doing something to fight back and not give in to that control. The most common regret I see expressed by those who have had HSCT is that they didn’t have it sooner, before accumulating as much damage.

Last week, The Times published an updated personal account written by BBC correspondent, Caroline Wyatt, of her progress and recovery from HSCT.

If only we could all look this cool with a walking stick!

Caroline has had a mixed recovery and says this about where she is now…

“Nearly two years after my stem cell transplant, I’m back to where I started. Yet curiously, I am also more at peace with myself, with my life and with multiple sclerosis.”

You can read her full account here (you will need to provide your name and email address in order to read the full article – it’s quick and easy and there is no commitment).

It is an inspirational, highly personal, honest account and many of us in the world of MS/HSCT are grateful to her for talking openly about her experiences …

Caroline Wyatt: multiple sclerosis and my stem cell transplant, The Times, November 17 2018

Many MSers recovering from HSCT feel that their recovery isn’t complete until 3 or 4 years after treatment, so there is hope that Caroline could see further improvements.

Caroline wrote an earlier account of her treatment at Clinic Ruiz in Mexico, which can be read here …

Caroline Wyatt: How I’m feeling after my MS ‘body reboot’, BBC, March 22nd 2018

You can follow Caroline on Twitter @CarolineWyatt

GoFundMe

45 Ask me a question …

I am aware that I’ve just been talking at you for weeks about my MS, my pursuit of HSCT and our fundraising efforts. Whenever I talk to friends and family, they always have lots of questions, so I thought I’d throw this open to everyone!

So, if there’s anything you’d like to know, you can submit a question in the comment box below or through any of the following:

Instagram @anothermswarrior

Twitter @anothermswarrio

Facebook Another MS Warrior

Or, if you know me you could WhatsApp, text, email or ask me in person!

I’ll pull any questions together and try to answer in future blog posts.

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33 BBC Breakfast ~ Friday 19th October 2018

Yesterday was an exciting day in the UK world of MS/HSCT, when BBC Breakfast did a feature on HSCT. The item featured Roy Palmer and his partner, Helen talking about the amazing life changing improvements he has experienced following HSCT. Roy was in a wheel chair for 10 years and is now walking again!

HSCT works!! ??‍♂️

Roy is a member of the online support group that I am also part of and is living proof that HSCT can help those who are older (Sorry Roy!), have long established MS and who are no longer mobile. Like most of us, Roy had to fight to get HSCT and prove that he met the strict criteria required for NHS treatment. It was wonderful to see Roy so happy and positive on the BBC Breakfast sofa!

Whenever the BBC feature any discussion about MS, they always wheel out an “expert” from the MS Society and this is where many of us begin to feel frustrated at the slow progress in making HSCT more widely available to MSers who want and need it.

The MS Society does some excellent work in providing information on the disease and on current mainstream treatments. They also facilitate many groups and activities at a local level, which is a huge support to many. But they are not only slow to promote HSCT, but actually continue to provide untrue information. HSCT is not an experimental treatment and is not only appropriate for a very small number of those with MS. There are too many success stories from patients with diverse presentation of the disease for them to continue saying this …yet they do.

Worldwide MS Societies are all connected and are partly funded by the big pharmaceutical companies, who make millions from the drugs currently used to treat those with MS. I guess if we all had HSCT, hardly anyone would need those drugs anymore and their funding stream would end. I don’t know if this is the reason for their reluctance to get behind HSCT, but find it hard to accept that an organisation that exists to support those with the disease, does not always seem to have the interests of patients at the forefront.

As well as fighting for my own treatment, I find myself wanting to fight to help others. So yesterday, along with others I found myself posting on BBC articles about the item, directing people to more reliable sources of information.

The UK now has a new charity dedicated to supporting those with MS (and other autoimmune diseases) to access HSCT. The charity was formed by a group of MS Warriors and partners of MS Warriors who have had HSCT treatment and want to make a difference to others.

You can find out more about their work here…

AIMS Facebook Page

or on Twitter @aimscharity

For those with MS who are interested in HSCT, there is an excellent Facebook group for information and support.

UK HSCT Facebook Group

And YES, I am going to the ball! ????

26 The long road to HSCT

As you all know, I am determined to get HSCT for my Multiple Sclerosis. There is a lot going on in the background to try to get to that point, so I thought I’d update you on where I am up to …

My first choice would be to have treatment in the UK on the NHS, but it’s a huge challenge to even be considered for treatment here. I have started by writing to my neurologist to see whether he would be willing to refer me to the Haematology department and Manchester Royal Infirmary as a I know that a handful of MS patients have already been treated there.

I haven’t had a reply from him, but I have had notification that my November appointment has been rearranged and a double appointment allocated. It’s really difficult to know what to make of this – perhaps he is considering referring me and needs a double appointment to discuss it all? Or perhaps he is worried that I am considering going abroad and has arranged a double appointment to try to talk me out of it??!

Even if this referral was successful, the next stage is for a panel at the MRI to consider my case. The criteria for treatment are shrouded in secrecy, so I have no idea if I have any chance at all!

If this route doesn’t get me there, my next option is to try to get referred to the London panel. To do this, I would need to convince my GP to refer me to a London neurologist for a second opinion on my MS.

From the beginning I have been told that my MS has “unusual presentation”, so I would try to be referred to a neurologist I am aware of, who has a particular interest in patients with unusual presentation …he also has an interest in HSCT.

Both of these routes have a very small chance of success in terms of me accessing treatment. UK neurologists are on the whole, not particularly supportive of HSCT at the moment. I really think this will change in the future but we haven’t got there yet.

Which then brings me to the other option …clinics abroad. There are a number of countries where HSCT is available at high cost and in some cases, only for residents of that particular country. There are also several unscrupulous facilities offering “stem cell therapy” which does not include all the stages of HSCT, so is therefore ineffective.

There are two clinics recommended by UK support groups – one in Mexico and one in Russia. I have spent a lot of time researching the treatment at both, talking to previous patients and having discussions with my family and have come to the conclusion that the clinic in Russia is right for me.

If you haven’t done the research I have, it perhaps sounds a little crazy to be planning to go to Russia for such life changing treatment …but it really isn’t! They have many years of experience of treating MS patients, a high success rate and an excellent safety record.

For a while I planned to exhaust all UK options before starting plans for going abroad, but each option presents a long journey and I’m worried about deteriorating while I wait for all these processes to run their course.

So, here I am pursuing both options at the same time.

GoFundMe

13 Chasing stem cells

Pharmaceutical companies,

I thought it would be a good idea to document my efforts to access HSCT (or “stem cell transplant”) …

I am a member of an online group that supports MS-ers to access HSCT both in the UK and abroad. Through the group I heard of a haematologist in Liverpool who has treated a handful of MS patients. I managed to track him down and get in touch with his secretary, persuaded my GP to refer me and was allocated an appointment in August. I was in contact with a few other MS patients who were exploring this route and we were sharing information and ideas and generally providing moral support. We were all super excited to be taking out first steps towards beating MS.

Then, one day in July, we all received the bad news that Liverpool was not going to be taking on any new MS patients and our appointments were cancelled. This was devastating news – I really had thought that this was my best hope of getting HSCT in the UK.

Knowing that the Liverpool haematologist had initially started treating MS patients within existing budgets, I began to wonder if there were other haematologists who might also be doing this, or who might be willing to consider it. I decided to write to the head of haematology at my nearest large hospital and was surprised and delighted to receive a phone call from one their team a couple of weeks later.

He explained that they had already provided HSCT for a few MS patients who had been referred by the neurology team at the hospital where I see my neurologist! He told me that if my neurologist would refer me, they have a panel of haematologists and other experts, who would then decide whether I am likely to benefit from HSCT.

I don’t have another appointment until November, so have written a long and impassioned letter to my neurologist , asking for a referral and explaining why I think HSCT is right for me – I haven’t heard anything back from him yet.

Anyone reading this is likely to think this is beginning to sound quite hopeful. I’m trying to have faith that this will work out for me, but unfortunately I am aware that the neurology team I see are generally not very pro-HSCT. In fact this seems to be the view of many neurologist up and down the country and in other countries too. I’m still trying to fathom out the reasons behind this.

The drug companies make huge amounts of money from MS patients. DMT treatments cost £8 – 20,000 per year per patient. It is not in the interests of the drug companies for large numbers of MS patients to halt their disease with HSCT and no longer require these drugs. There is a relationship, which I don’t quite understand, between the drug companies and the medical profession, with each supporting the other and perpetuating the status quo. In addition, many MS patient advice charities receive funding from the same drug companies. The result of all this, is a culture of belief that drugs are the answer – most research is on more drugs, new drugs, better drugs, rather than looking at other means of tackling the disease.

Another possible issue is that HSCT, as a treatment for MS, was discovered by haematologists rather than neurologists. In fact, the positive impact of HSCT on MS was discovered by accident, when an MS patient had the the treatment for cancer and found that his MS was also put in remission.

Either way, this is the battle MS patients seeking HSCT currently face. If HSCT for MS was widely available, there are potentially massive savings for the NHS and for society. HSCT costs the NHS £30,000 per patient – the cost of just 3 years of the DMT I am about to start. Imagine this many times over and you can see the huge savings that could be made. This is before taking into account the additional medication that many MSers need and other costs such as physiotherapy, mobility aids and benefits when people are unable to work.

Some patients have been able to access HSCT privately in the UK at a cost of around £80,000, with many more now choosing to travel abroad for treatment costing £40-£60,000.

So this is the dilemma in which I now find myself! It could take months for me to reach a conclusion with my neurologist and the final answer is most likely to be no. Do I hang on for this before considering other options? This is a tough one. One thing MS patients don’t have is time. The disease is progressive and I have already had my worst decline since onset, over the last 12 months. If things continue at the same rate, I dread to think how I will be in another 12 months. HSCT halts progression of the disease, so it is important to have it as early as possible, before more permanent damage is caused to the central nervous system …”time is brain” as they say in the HSCT world! I have spoken online to many people who have had HSCT and no one ever regrets having it, the only regret expressed is not having it sooner.

I don’t have the funds to immediately set off and have HSCT abroad, but I have had lots of discussions with various people about whether we could raise this amount of money. Indeed, many MSers from the U.K. have already done so.

I am touched and delighted that my wonderful family and friends are totally behind me and willing to do what they can to help. I first talked about this with my children a couple of months ago and their reaction was immediately one of support and optimism …they are already coming up with some amazing fundraising ideas!

So, we will soon be launching my fundraising campaign and trying to raise the money for my treatment abroad. In the unlikely event I later find my neurologist will support my treatment locally, I will give all funds raised to AIMS, a new charity formed by MS HSCT patients to support others seeking treatment.

If anyone has any fundraising ideas, advice or experience, please get in touch.

Thanks once again for all your support.

11 More about stem cells …

As mentioned in a previous post, I have spent the last few months researching HSCT (stem cell transplant) to find out more about what is involved and to see whether it might be a good option for me …I have come to the conclusion that it is!

I have also been finding out more about other treatments for MS, so that I can make a reasonable comparison. There are several treatments (Disease Modifying Therapies, DMTs) available – non of them cure MS – they have varying degrees of effectiveness in reducing the number and severity of relapses and for some have no impact at all. All DMTs bring potential side effects and short and long term health risks.

Side effects include stomach upset, flu like symptoms, injection site issues, low mood and suicidal thoughts (as if having MS isn’t enough!). Side effects are common and patients often have to try several different drugs before finding the one that suits them best.

The mechanism by which most of these treatments work is unknown, however, all work to reduce the effectiveness of the immune system. This means that patients are at risk of repeated infections (stomach bugs, coughs and colds, fungal infections, urinary tract infections, cold sores etc etc). There is also an increased cancer risk and little is known about long term use, as the drugs are fairly new. In March 2018, one DMT was withdrawn after a serious risk to life was identified – it had been introduced just 2 years previously. One of the most powerful DMTs is known in some circles as “Liquid HIV” because of its devastating effect on the immune system.

So, how does HSCT compare.

Well, it’s true to say that HSCT is an invasive and challenging treatment. Chemotherapy is no walk in the park and there is a period of time when the immune system is so low, that there is serious risk, even from minor infections. Recovery from HSCT can be slow and difficult and patients must be prepared to work hard to regain fitness.

But, once fully recovered, there is no need for further treatment, no compromised immune system and, for many, no MS! HSCT is effective in halting the disease in 70-90% of patients …no DMT comes near this.

HSCT is not widely available on the NHS (yet) but there is hope amongst patients that change is coming. A major international trial has been taking place over recent years, including patients treated in Sheffield (referred to in the BBC link in an earlier post). HSCT for MS is currently available in two London hospitals and there are whispers that other hospitals are beginning to treat a small number of patients. The MS Society, MS Trust and other patient support groups are beginning to provide information on HSCT and the tide is slowly turning.

MS-UK has a useful write up about HSCT here.

UK hospitals are already very experienced in providing HSCT as it is almost the same treatment as used for leukaemia and other blood cancers. Haematology departments are able to use a percentage of their budgets to treat non cancer patients and this is how some MS patients are able to access it.

Now I’m working on finding out how I can access it too.

9 Are stem cells the answer?

A couple of months ago, I was watching the news when this report on Hematopoietic Stem Cell Transplant (HSCT) for multiple Sclerosis appeared…

Stem cell transplant “game changer” for MS patients (Fergus Walsh, BBC 18 March 2018)

I’d seen “stem cell therapy” and “stem cell transplant” mentioned on various MS websites and support group pages, but thought it was a long way from being available on a scale that might be helpful to me. There are also a whole host of scam, money making clinics around the world, offering various stem cell treatments for a range of ailments, with no evidence of success.

I decided to research further.

I have spent the last few months reading as much as I can about HSCT, speaking to others who have had the treatment and asking lots of questions. I am so lucky this has happened to me at the time of social media and internet access – so much information at our finger tips.

HSCT works by tackling the faulty immune system – the root cause of MS – rather than treating symptoms. By “wiping out” the immune system and rebuilding a new one without the memory of MS, 70-90% of patients experience a halt in disease progression, with many also experiencing an improvement in their symptoms. These outcomes far exceed any current drug treatment for MS.

There is much more I could write about HSCT, but the main thing I want to say for now is that I have come to the conclusion that HSCT is, by far, the safest and most successful treatment for MS currently available.

My next step is to find out how I can access it …