My journey to HSCT: Scotland to Mexico

My fatigue and concentration levels go up and down. In September 2022, after completing a health screening application online, I was accepted to a clinic to undergo HSCT and chose my start date.

Why did I choose HSCT?

I have always been intrigued by HSCT for MS, but since I was stable I felt that the risks were not worth the benefits.

This changed when my wife suffered a catastrophic brain aneurysm in 2020. She went from a healthy 32-year-old woman to being unable to speak and walk, and requiring 24-hour care. My old MS symptoms were beginning to resurface at the same time, and I started to feel a deterioration. I decided I wanted to hit my MS with the hardest treatment available.

Read our tips for talking about HSCT with your MS team

I connected with people who had been through HSCT online, through the AIMS Charity. When speaking with them, the re-occurring sentiment that came through was: “I wish I had gone for HSCT sooner.”

I’d read positive accounts of Clinica Ruiz in Mexico in some of the HSCT blogs on the MS Society website. So I set about planning my journey there.

What my treatment in Mexico involved

Arrival

I travelled to Mexico with my mum, and it was amazing having someone from home out there. The clinic checks your blood, lungs and heart, and takes MRIs of your brain and spine. This is to make sure you’re fit enough for the procedure.

I was given a clean bill of health (minus the MS).

First and second dose chemotherapy

In total, I received four doses of chemotherapy (cyclophosphamide). I was so nervous before my first dose of chemotherapy as I had no idea how I would react.

Filgrastim injections

Then, I received two filgrastim injections daily. This helps the bone marrow release new stem cells into my bloodstream for harvesting. 

A side effect of these is bone pain (like growing pains). I never had it as bad as some other patients, but when I did it was extremely uncomfortable.

Sub-clavian Hickman line

I was fitted with a sub-clavian Hickman line – a long, thin tube that goes into your chest and passes through the larger veins through your heart. As scary as this sounds, it was a straightforward day. I was sedated while it was placed. It’s uncomfortable but only in place for three days and helps with the next stages of the treatment.

Stem cell harvest

I was hooked up, through my line, to an apheresis machine. That separates your stem cells from your blood. The machine is very noisy. It takes a few hours to harvest enough stem cells, and you can't stop the machine once it starts. But it’s painless.

The harvested cells are then stored ready for your transplant a few days later.

Third and fourth dose chemotherapy

I received my final two doses of chemotherapy. The side effects were nowhere near as bad as the first two doses.

Stem cell transplant day

I received my stem cells back through an IV drip.

Neutropenia and hair loss

After the transplant I entered a period called neutropenia. I had low immune function and was very susceptible to infection. There were added restrictions on what I could eat, my exposure to other people and the outside environment. I found this part to be mentally tough due to the isolation.

During this time, my hair really started to fall out. It’s weird waking up each morning with more hair on the pillow. I had to use a lint roller to remove the loose hairs, as I didn’t want to risk any cuts by shaving.

Discharge

Once my blood counts recovered to a safe level (after about a week), I was treated with a final infusion of rituximab. After that, I was discharged from the clinic.

Although my immune system had recovered to a safe level, it was still very naïve and not used to dealing with viruses. The thought of getting on a transatlantic flight and breathing in recycled air for hours filled me with a lot of anxiety. You have a lot of restrictions on what you can eat and do after HSCT. Jumping on a plane is probably not that advisable, but there is no other way to get home, so I just had to do it. I was nervous, but I ended up sleeping the entire way back.

Recovery

In the six months following the procedure, I was recommended to take prophylactic anti-viral and antibiotics – medications to stave off disease. I used a combination of private and NHS healthcare.

Since my neurologist wasn’t involved with my HSCT treatment, I found a private haematologist. He spoke to my GP and told him that the process wasn’t as complicated as he might think. All that would be needed from my medical team in Scotland was regular monitoring and some prescriptions, as advised by the clinic in Mexico. The private haematologist also arranged for me to get all my vaccines again through the NHS. My blood levels were to be checked monthly by my GP.

The clinic, my private haematologist and my NHS GP were all joined up.

I had to take sensible precautions such as limiting my exposure to anything which could cause an infection. My recovery was smooth, and I was able to resume remote working within six weeks of coming home.

How I feel more than a year after having HSCT

The big question I always get asked is “Has HSCT worked?” Truthfully, I feel no better or worse since receiving the transplant.

But I've not been on any other DMTs for over a year, and my latest MRI shows stability. And a reduction in the size of existing damage - the first time I have ever had an MRI show this!!

Are you considering HSCT?

The decision to go for HSCT is very personal. It’s a hugely promising, high-efficacy DMT, but it also carries the most up-front risk of the MS treatments. I found it helpful to get information and opinions on the pros and cons of HSCT – as well as the possible outcomes.

Thinking about HSCT? How, when and why it’s an option for MS