My personal journey with HSCT

Stem cell transplantation or HSCT is a treatment used in MS, where your own stem cells are used to reboot your immune system. The results suggest that this treatment can delay or halt further progression. In this article, Chris Wasey gives us his account of the treatment process and the impact it had on his MS.

Hi, Chris, it's lovely to speak with you today. Could you start by talking about the beginning of your MS journey, including things like your initial symptoms and diagnosis?

The journey began about 15 years ago, when I was 21. I woke up one day and couldn't walk straight. There were other things too, like slow speech, my memory wasn't very good and I had a slight blurring of vision. Over a period of a month, I went to the doctor maybe five times. It was only when I went to see a locum doctor and my wife, who was a student nurse at the time, suggested to them that I might have an MRI, that they put me forward for that. I had a lumbar puncture, the MRI, and then was diagnosed with clinically isolated syndrome. About 18 months later, I had my first relapse and an official MS diagnosis.

Did your MS team discuss DMD options with you?

The first things that were offered to me were disease modifying drugs (DMDs). I was given pamphlets and agonised over what I wanted to do. In the end, I went with Rebif before moving onto Avonex. I failed on that twice so they referred me for Lemtrada. I did two rounds and then failed about eight months later. That’s when HSCT was first mentioned. I had a choice of HSCT or a third round of Lemtrada so I opted for a third round which failed again. I know that there are discussions about whether HSCT should be operated as a first line treatment to approach MS aggressively, but for me it was more of a last chance approach.
 
What were some of the things you had to consider when you thought about having HSCT?

I do a lot of freelance work but I also have a job teaching. Knowing that there was going to be time off work was a concern. Fertility was the biggest discussion point though. My wife and I had been trying for a baby for about a year when the treatment was offered and had hoped we’d fall pregnant before it went ahead. I was keen to wait another year, rather than have to try IVF later, but my wife was adamant that I not wait any longer.

What was the referral process like for you?

After my third round of Lemtrada, my MS nurse referred me to a consultant neurologist. We talked about the transplantation and then he made an appointment for me to go and see the haematologists. They were really supportive and explained all the risks that would go along with having that kind of chemotherapy, from your first round, right through to isolation at home and diet. Then we booked a time for me to go in. 

You were the second person with MS to receive HSCT on the NHS in that hospital. Was that something you thought about a lot?

I knew I was the second one and they were very upfront about that. They explained everything and because they had been giving HSCT to people with cancer, I wasn't concerned.

How did you feel during the process?

The tranplantation comes in three stages. Round one, when you're going through your first round of chemo as a day patient, nobody feels good but I didn't feel as bad as I thought I was going to. You also wait for your hair to fall out at this stage. Then you’ve got your activation injections, they do bloods and get your stem cells. After that, it's back in for your Hickman line, then all of the inpatient stuff. It was unpleasant but not as awful as it could have been. Knowing what it was doing to my wife to see me looking the way I did and even more than that, my son, who was four at the time, was difficult. He couldn't get his head around it but we tried to keep him involved.
 
What sort of aftercare did you receive and how did your health professional team manage this?

Aftercare was really good. I had the benefit of the NHS but when you leave, they give you an enormous bag of medication to take to protect your body from infections because you have no immune system. It's difficult to come to terms with the fact that you're going to have to be very careful for quite a long time. Even though you're taking those things, you're still going to get sick if you go out into the world.

What did recovery look like for you?

When I first came out of hospital, my son was going into nursery so I spent three or four weeks at my parents’ house before coming home. Overall, I stayed in the house for roughly three months, but would go out for walks. I didn't go to places where there were many people for the three months following that and I was off work for around five months. I was back at work for roughly three weeks before coronavirus started and then immediately had to go back home and start isolating again for another period of several months.

What was it like going back to work afterwards?

My colleagues were lovely. They took on a lot of my workload so that I could do a phased return. I wanted to get back into it quickly but realised very early that it was exhausting. By the time I was ready, things went a bit strange with the entire world and I had to go home again.

It's been two years since you received HSCT. Have you noticed any differences in yourself?

My understanding is that HSCT doesn't generally make improvements. I know that everybody's experience will be different but if you get improvement, it's really fortunate. The main aim is to stop progression. For a period of time after the transplantation, things will get worse while your body is still trying to figure itself out again. Things like my coordination and stability were quite poor but got better and are now back to roughly where they were before, outside of relapse. Beforehand, I was having a relapse every year to 18 months. It's been two years now which is my longest period without relapse since diagnosis, 15 years ago, so that's fantastic.

HSCT has been in the media quite a lot recently with Nicola Chapman Haste and Selma Blair both sharing their journeys. How do you feel about the topic being discussed more widely?

To have someone in the public eye with MS, that other members of the public will take note of, is really important. I know it’s a big responsibility to take on but for these celebrities to open up and talk about MS and HSCT can be of huge benefit to everybody who has got the disease. I know that when I talk to people about having MS, they seem to feel uncomfortable so most of the time, I don't mention it. But if there's somebody famous they have heard of, and you can point towards them and say, "Look, this is what it is", it makes that initial conversation much easier.

What advice would you give to others who might be considering HSCT for their own MS?

Do as much research as you possibly can. Ask for resources from people like your neurologist and your MS nurse. If you decide that you're going to do it, plan and prepare as much as possible. For me, it was a case of having lots to do while I was in there, but everybody will be different in terms of what's best for them. Consider what your life will be like for six weeks stuck in a single room. What do you need to get through that? You can't really help how your body is going to react to the medication but you can manage your mental state.

AHSCT for relapsing remitting MS is currently available on the NHS in Scotland, Wales and England. It is offered at a small number of centres in England, but the number of people who are accepted for treatment is extremely small. AHSCT is not currently offered on the NHS for people with progressive MS.

People are usually only accepted if they continue to have relapses even after trying one or more of the disease modifying drugs. In addition, people with very aggressive MS, who have developed severe disability in the previous year, may be accepted for AHSCT.