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Finding, losing and finding hope again - Caroline's HSCT journey

Caroline Wyatt

A cheery Mexican sombrero hangs on my wall, a souvenir of what I hoped would be a life-changing trip for a stem cell transplant for MS in Puebla in January 2017. It’s the first thing I see when I open the front door, and its bright colours make me smile when I come home from work.

Almost exactly five years ago, I was still trying to recover from the most severe relapse I’d ever had. It had left me unable to see properly, choking on food and desperately wobbly on my feet. The lesion on my brain stem was threatening my ability not just to work or to travel, but to live anything approaching a normal life.

I hadn’t responded well to the disease modifying drugs that I’d been on, and didn’t qualify for HSCT in the UK. And crucially, time was not on my side.

I was approaching 50, and I’d only recently been diagnosed with relapsing remitting MS after more than two decades of symptoms. So the option of going to a private clinic abroad felt perhaps a little extreme, but well worth a try. I felt that I had little to lose, and everything to gain.

Symptoms simply disappeared

That month of chemotherapy in Mexico followed by a transplant of my own stem cells at Clinica Ruiz gave me enormous hope. I began to feel better straight after the first round of chemotherapy and improved again after the second. I was sick and nauseous afterwards, but my worst MS symptoms were disappearing rapidly.

I had an infusion of the monoclonal antibody Rituximab, a drug sometimes used off-label in treating multiple sclerosis (and also in preventing the reactivation of Epstein-Barr virus, one potential trigger for MS). The fatigue that had crippled me for so many years began to lift. The heavy weights that had for so long seemed to wrap themselves around my arms and legs simply disappeared.

It seemed that the non-myeloablative chemotherapy had worked.

For a few blissful months after I returned home to England, I could walk for up to ten miles in a day, rather than the few hundred metres I’d been reduced to before.

And when I woke up in the morning, I felt refreshed by a good night’s sleep – my brain no longer a foggy, soggy mess. I felt reborn and savoured every single moment.

Returning symptoms

But by May that year, the fog began to return, along with several other MS warning signs. I began to struggle with fatigue again.

By the end of 2017 my legs started to feel that same dreaded heaviness once more. I woke up with headaches or migraines that no drug seemed able to quell. And felt as though I hadn’t slept in decades, while the ill-named MS hug returned to squeeze the life out of me.

Then sleep itself began to elude me. Worse still, when I got up in the morning, I’d have sudden shooting pains through my head, like a cattle prod or electric shock to the brain. 

It was a slow and steady decline that continued remorselessly throughout the succeeding years.

I was left struggling not just with the same old debilitating physical symptoms of MS, but also with the death of those earlier hopes of arresting my journey down this steep and unwelcome path.

Last year I was diagnosed with moderately severe sleep apnoea, but available treatment failed to bring much relief. I still woke up exhausted and weaker than ever, struggling to lift and fill the kettle for my morning cup of tea or to align my blurry vision first thing.

On some days, having enough energy to take a shower was my one major achievement. Work became even more of a challenge. Every day at the office once again became a delicate balancing act of rationing enough energy to get me through.

Relapse

By May this year, increasing dizziness, numbness and a right hand and foot that no longer worked properly made me wonder whether I was having another relapse.

I was. A brain scan revealed a new lesion on my brain - and confirmed my worst fears. While I’d responded well initially to HSCT, my MS was back with a vengeance.

Fond memories and future hopes

Yet I still look at my Mexican sombrero with affection. It stirs so many happy memories of those brief months during and after treatment when I felt almost healthy again. And when hope flowed freely through my veins.

I wish I’d known about HSCT sooner - at an earlier age, or before my MS had progressed to a stage where even the most effective treatments may prove less useful.

I’m still thrilled that some of those treated at the same time as me continue to do well. They’re able to walk, work and live a full and more normal life again, without their MS returning to shrink their world and their options. All of us have had very different results, and we stay in touch across the globe, from the UK to Norway and Kenya.

As for me now, I’m taking part in the MS-STAT 2 trial of statins for secondary progressive MS, and waiting to start NHS treatment with siponimod (also known as Mayzent) which is licenced for active secondary progressive MS. After a summer of tests to make sure it’s suitable for me, and me for it, I’m very much hoping that I passed.

There are few other treatments available at the moment for secondary progressive MS. And although many clinical trials look promising, approval for the more experimental drugs is probably still many years away.

I’d just like to stay well enough and save enough of my brain to benefit from some of those breakthroughs, which may one day help me and many others with MS to maintain our independence and continue to contribute to the wider world.

And perhaps, if I’m really lucky, the fruits of that wonderful medical research will enable me to continue to enjoy this one wild and precious life with my family and friends for as long as I possibly can.