Dear Friends and Family
I’m having a bit of a dilemma, so thought I’d ask your opinion…
As you know, I was initially booked to go to Russia for HSCT on 23rd April and began fundraising 6 months earlier in order to raise the £40K needed to cover treatment costs and flights. Despite our best efforts, we were still over £20K short by the time payment was due. It may have been possible to borrow and continue fundraising afterwards, but I’m a bit worried about doing that. I have recently had to reduce my working hours and am therefore earning less, so I’m anxious about having a large debt.
At the beginning of April, we made the decision to delay my trip to Russia in order to give us more time to raise the funds. We then decided to have a complete break from fundraising for a few weeks. It really is so mentally and physically draining to be arranging events and asking people for money all the time!
In the midst of all this, I unexpectedly heard about a new UK trial comparing HSCT to Lemtrada (a high efficacy MS drug) the STAR-MS trial. There has been talk about this trial for a while now but it always seemed to be planned for sometime way in the future. I also assumed it would be small scale and would be led by medical teams in London.
The trial is to take place at 19 centres across the UK and will be led by the neurology/haematology team at Sheffield Teaching Hospital, with first patients to start treatment in the Autumn of this year. This team is already experienced in providing HSCT to treat MS, as they were involved in the international MIST trial, which produced impressive results for HSCT earlier this year …
I was totally thrown by this news – I’d given up on the possibility of having treatment in the UK and had assumed this new trial was a long way off, would be small scale and would have very restrictive eligibility criteria.
It was a Sunday afternoon when I found out about this and I decided to go straight to the top for some answers … I emailed the lead haematologist involved, expecting to possibly get a vague reply from his secretary a few days later. To my surprise, he replied within the hour, suggesting I ask my GP to refer me to the lead neurologist, who he also copied in to his reply.
There are already some patients who have received HSCT in the UK, mostly through two hospitals in London and I am aware that they use very specific selection criteria, which I don’t currently meet. The criteria are as follows:
I. Diagnosis of MS made by a neurologist
II. Able to walk, needing at most bilateral assistance to walk 20m without resting
III. In relapsing MS (RMS), failed one licensed disease modifying drug of high efficacy (currently including alemtuzumab and natalizumab) because of demonstrated lack of efficacy
IV. New MRI activity within last 12 months
I believe I meet all of these, apart from number III. Basically to be eligible for HSCT in the UK, you are required to have tried and failed a succession of other MS drugs, including the most effective and risky ones (please see my earlier post “Escalation vs de escalation” for more on this). This doesn’t make sense to many of us with MS (and to some professionals) as each drug failure means the patient has experienced disease activity and therefore further damage to their brain and/or spinal cord. Furthermore, it can take several years to go through a trial of each drug.
I don’t feel I have this time. I don’t want to risk more disease activity and further damage and being in the older age bracket (for a recently diagnosed MS patient) means I literally don’t have time … I need to take the strongest possible step to halt my MS NOW!!
I emailed the lead neurologist with a bit of information about myself, my MS history and put forward my argument on why I don’t have time to go through the steps to meet criteria III. He replied to say he would be happy to see me and discuss this further.
This has given me a little bit of hope that I could be considered for the trial.
It is now 5 weeks on and despite numerous phone calls and emails, I still haven’t heard back from the team in Sheffield, other than to receive confirmation that have received my referral. I am struggling with this waiting!
If I can have HSCT in the UK before the end of this year, then I’m happy to wait. But waiting to find out whether they will consider me is getting me down.
I am rebooked for treatment in Russia on 26th August and if I’m not able to get treatment here, I don’t want to delay the Russian option any further. And if I AM going to Russia in August, I need to get back to fundraising NOW!
This is where I’m stuck! Should I put Russia on indefinite hold until I have exhausted options in Sheffield. I could start fundraising again and have treatment once we reach our target? But this could possibly mean waiting until next year to be treated. Or should I focus on Russia, start fundraising again and follow the Sheffield option in the back ground, just in case they’ll have me?! Would it be right to be fundraising, whilst also following another option?
This is the loop that’s going round and round in my head (often in the middle of the night!). I’ve been so focussed for months now, on pursuing treatment in Russia and knowing what I’m aiming for; now I feel as if I’m drifting, with no real focus. I need to decide on a definite plan!
So, I’d love hear your opinions on this. What would you do on my position? Is there another way of looking at it that I haven’t thought of? How can I get my focus back?!
Or, maybe I’m just over thinking the whole thing?!
Do the second: focus on Russia and fundraise, as you may need this if UK comes to naught.
But pursue the UK as hard as you can “in the background” and if that becomes viable, flip to that.
It is absolutely fine (IMnot-very-HO) to fundraise. Whatever happens you are going to need funds to support you in your recovery. Anyone who knows you knows what an honest person you are: if you have some residue left after, donate it either to further research or another individual seeking this life-changing option.
Go after your best options, with all your heart and all your strength. That’s what people have donated for: not for Russia, or UK, or anything like that. But for YOU. To save your well-worth-saving health and life. Do not overthink. Xx
Ah thank you Cat ..kind and wise words as always xx
It’s also pretty much what other people are saying too.
I do far too much overthinking! 🤪
Much love xxx