haematology – Another MS Warrior

91 Sheffield update

I want to begin this blog post with a big thank you to everyone who has been in touch, wished me luck, and offered supportive words and hugs this week. It means such a lot to me and I am very grateful for the wonderful friends and family I have in my life.

My visit to the HSCT Clinic in Sheffield was interesting, mostly positive and very exhausting! I had a full neurological examination (involving being prodded with pins, hit with hammers and having tuning forks held on my joints!), a long discussion with a neurology registrar, meetings with Professor Sharrack (Neurology) and Professor Snowden (Haematology), a discussion with two haematology nurses and had bloods taken.

I am now waiting for an MRI scan (mid July) and a further appointment with the professors (mid August) for a final decision. I have found myself in the rather peculiar situation of hoping that this MRI scan will reveal new disease activity – my last three have, but the most recent was 13 months ago and the Professor is interested in the last 12 months.

The haematology nurses provided me with a lot information about the treatment and how this is managed in Sheffield. They have treated 60 MS patients there over the last few years, with the number treated each year gradually increasing. I was very impressed with the level of care and excellent treatment planning I heard about.

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I have a couple of fundraising updates to tell you about …

My beautiful niece and her friends ran a stall at their school and raised a fantastic £25!! Thank you Anna and friends xxx

A while ago, I took a box of unwanted bits and pieces to Maxwell’s Auction Room, hoping to raise a couple of hundred pounds. Today I received a cheque for £450! Such a lovely surprise! There are a few items still to sell (in a “collectors auction” in July) so hopefully more to follow. If you have any old rubbish in your loft, I’d really recommend taking it to the auction room.

Maxwell’s Auction Room

Maxwell’s is used on TV in Dickinson’s Real Deal and Cash in the Attic

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Obviously, with the timescale of things in Sheffield, I’m going to have to revise my plans around treatment in Russia and continuing to raise funds. I hope to let you know about that very soon. I have been discussing all decisions with my family throughout this journey and they have been a huge help and a source of really useful ideas and advice.

Thank you again for your ongoing support ❤️

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.