Tag: progression

99 The story so far …

Today, 16th September 2019, is exactly one year since we launched our fundraising campaign, asking family, friends and strangers to help raise a massive £40K to fund HSCT for me in Moscow.  I know I have many new readers since then, so thought now was a good time to write a bit of a summary of the story so far and also to reflect on how far we have come.  

I was diagnosed with Relapsing Remitting Multiple Sclerosis in 2017, after at least 5 years of worrying symptoms and concerning finds on MRI scans.  I also have Hashimoto’s Disease, autoimmune thyroid disease, which was diagnosed in 2006. 

The progression and accumulation of disability of my MS has been rapid.  At the time of diagnosis, my EDSS score was around 1.5 and by December 2018, my neurologist assessed me as 6 (I think I am nearer 5 or 5.5).  I have other long term problems and don’t want to get any worse.  

In May 2018, I saw a BBC news report about HSCT (Haematopoietic Stem Cell Transplant) being successfully used to treat MS and halt its progression (HSCT does not cure MS or undo previous damage to the brain and spinal cord).  Since then, I have been reading, researching and talking to others in order to learn everything I can about HSCT and find out whether could be a viable option for me.  

Click here …

Stem cell transplant “game changer” for MS patients – BBC News 18.03.18

By the Summer of 2018, I had come to the conclusion that it could and began looking seriously at how to access the treatment.  I was aware that some MS patients have been successfully treated in the UK, but that the criteria for inclusion were very specific.  I also knew that I did not meet the criteria, so began researching options abroad.

To cut a long story short, I identified a clinic in Moscow, the AA Maximov Department of Hematology and Cellular Therapy, as my best option.  Well over 1000 international MS patients have been treated here, with several hundred from the UK. 

The cost is €45,000 and with the exchange rate at that time and the additional cost of flights and visas, we worked out that we would need £40K to get me to Moscow for the treatment I need.

We launched our Go Fund Me page on 16th September 2018 and began organising events and taking part in challenges to raise money.  Thanks to the generosity of friends, family and kind strangers, we have raised ….

In the mean time, I also applied to the clinic in Moscow, sent them my full medical records and was accepted for treatment.  We had hoped that I could have HSCT in April 2018, with a plan to borrow the rest of the money needed and to continue to fund raise afterwards.  Then, a couple of months before this, I heard about a new HSCT trial planned to take place in the UK, being led by Professor Sharrack (neurologist) Professor Snowden (haematologist) and at Sheffield Hallamshire Hospital.  This is the team mentioned in the BBC link above. I contacted both directly and despite not meeting their published criteria, they agreed to see me.

I had my first appointment with them in June, followed by an MRI scan in July.  I was told I’d have a follow up appointment in August, but I’m still waiting.  They tell me I will be allocated an appointment on Monday (16th September) and will receive a letter soon after.  

The last few weeks have been very difficult for me.  I’m not good at being patient or at not knowing what’s coming next.  I also feel that all other aspects of my life are in limbo …I can’t plan anything!  I must admit this has really got me down.

Hopefully by the end of this week, I’ll have an appointment date and feel a bit calmer about it all!   I think once I have a date, I will be able to throw myself into other things until the date approaches.  

The decision on whether to treat me in Sheffield or not, all hinges on the outcome of my recent MRI scan …if there is current disease activity, then the answer could be YES.  If there is no current disease activity, then the answer will definitely be NO.  My last 3 scans (most recent in May 2018) all revealed current disease activity, which was upsetting and worrying at the time.  Now I’m in the strange position to be hoping for disease activity! 

I am still in touch with the clinic in Moscow and they are aware of my situation.  If I receive a NO from Sheffield, I will ask for the next available date in Moscow (likely to be early 2020).

Here’s a summary in numbers, of all we have achieved …

  • Funds raised … £18,646
  • Number of donors … 147
  • Go Fund Me followers …145
  • Blog posts … 99
  • Blog subscribers … 22
  • Blog views … 5,283
  • Facebook followers … 107
  • Instagram followers … 208
  • Twitter followers … 262

Never in my wildest dreams did I think we could achieve this much, so thank you to everyone who has donated, helped with events, provided support, shared online and who have been there for me through this journey so far.

Hopefully I’ll have an appointment update by this time next week!

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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.