“A stem cell transplant let me walk again”
Roy Palmer has multiple sclerosis. After a decade in a wheelchair a stem cell transplant at Hammersmith Hospital gave him the ability to walk again. Stem cell transplants are an experimental treatment for sufferers of MS and for those that meet the strict medical criteria can slow the progress of the disease and enable the central nervous system to repair itself. Here Roy talks about his experience.
I was diagnosed with multiple sclerosis (MS) in 2003 completely out of the blue. I started getting pins and needles in my legs and paralysis that came and went. It got much worse very quickly. When I visited my GP, they said I needed to go to hospital straight away. The doctors diagnosed it from an MRI and a lumber puncture. For the last eight years I’ve been in a wheelchair.
Multiple sclerosis is an autoimmune disease – your body’s immune system attacks your own cells. In the case of MS, the immune system attacks the central nervous system. It damages the myelin coating of the nerve fibres which carry messages from your brain to your body, stopping those messages getting through and causing symptoms like mine. There is no cure, but there are treatments that can slow down the progress of the disease.
A ray of hope
A couple of years ago, I saw an episode of Panorama where a person with MS, who like me relied on a wheelchair, received a stem cell transplant to treat their condition. The treatment helped them to be able to walk again. As soon as I saw it could be possible to regain the use of my legs, I was determined to find out if I could have this treatment too.
I found out that Imperial was one of several NHS trusts in the UK that were treating some MS patients with stem cell transplants. They are treating small numbers of people who fit a strict medical criteria with autologous haematopoietic stem cell transplantation, which uses your own stem cells to repair your immune system and slow the progress of MS.
We all have stem cells in our bone marrow. These can either divide into more stem cells or develop into different types of specialised cells, such as immune cells. An autologous haematopoietic stem cell transplant involves transplanting some of a patient’s healthy stem cells from their bone marrow into their blood stream. It can be possible that these healthy stem cells can then produce new cells to replace parts of the immune system, which means that the nerve fibres can start relaying messages between the brain and body again.
I got in contact with Imperial about whether I could be eligible for this treatment. A consultant neurologist assessed me and found that I did fit the strict medical criteria, so I came to Hammersmith Hospital to begin treatment in October 2017.
Undergoing intense treatment
The first part of the treatment was called ‘mobilisation’. Over a two-week period I was given drugs that encourage your stem cells to move out of your bone marrow and into your blood stream, ready to be collected for transplant.
Next, Sinju Thomas, the lead apheresis nurse, used an apheresis machine to draw the blood out of my body and harvest the healthy stem cells from my blood. After she collected them, they were frozen in the stem cell lab ready for transplantation.
Once the haematology team had checked I was well enough to go ahead with the transplant, Sinju inserted a ‘PICC’ line, which is a tube that goes through the vein in your upper arm and leads into the major vein just above your heart. This was so they could give me chemotherapy to weaken my immune system and prevent it fighting the new stem cells. I was really nervous about having the PICC line put in because it goes near to your heart.
Up until that point I’d had the treatment as an outpatient, so we had to drive up from Gloucester and back for each appointment. But I had to stay on the ward to have the chemotherapy and then for the transplant itself, so the team arranged for my wife Helen to stay in accommodation near the hospital.
After the chemotherapy, the ward staff reintroduced the stem cells into my blood via a drip. Over the next two weeks they would grow into new, healthy immune cells. During that two weeks I had to stay in isolation, so that I didn’t contract any infections while my immune system was down.
Learning to walk again
Two days after I received the stem cell infusion, I woke up screaming in pain: I had a cramp in one of my legs. I just started crying; it was the first time I’d felt anything in my legs for nearly 10 years. My wife and daughter started massaging them, trying to wake them up!
I spent five weeks as an inpatient recovering from the transplant. During that time, I spent every day focused on learning to walk again with the support of a walking frame. The staff on the ward said they had never met someone as determined to get back on their feet as me. The physiotherapists helped me to build the strength back up in my legs, but it takes time for your brain to relearn how to walk after such a long time. I was getting stronger every day though, and for my follow up appointment in January I was able to walk into the Catherine Lewis Centre.
All the staff who looked after me at Hammersmith Hospital were amazing. Sinju Thomas supported me through the stem cell collection process and ensured I had good central venous access for treatment. Three other nurses – David, Hussain and Nadar – looked after me in the weeks I spent on Weston ward and kept me in high spirits. They kept saying that once I was back on my feet we would do the marathon together!
Reflecting on the experience
Having a stem cell transplant is a very intense experience – nothing can prepare you for actually going through it. Some of the stages of the treatment made me feel very ill – they gave me a drug called anti-thymocyte globulin to ‘turn down’ my immune system before my stem cells were collected, and for me that was worse than the chemotherapy for side effects.
It might not be a cure for my MS, but this stem cell transplant has changed my life. I’m now able to walk unaided again. It can still be very painful, so I’m continuing to have physiotherapy to strengthen my legs. Some of the exercises are really hard but I’m hoping it improves.
I’m looking forward to getting back to normal life. I used to work as a courier. I always wanted to be a special constable, but when I got the MS diagnosis, that was it – I thought my dream was out of reach. A police station local to me advertised for a special constable late last year. So I wrote them a letter, explaining that I’m undergoing a stem cell transplant, I’m determined it will help me to walk again, and would they consider me? They asked me to meet with them, and after our chat they said, although you’re not strong enough yet, what’s stopping you applying next year when you’re back on your feet? Until then I’m volunteering as a police cadet leader, which is a foot in the door.
My wife and I have been raising money for Imperial Healthy Charity’s Blood Fund to say thank you to the haematology team at Hammersmith for the care they have given me. We’ve raised £1,100. At the moment only MS patients who meet very strict criteria in certain cases can have this treatment, but I hope that with more research and more funding, increasing numbers of people can benefit from this and get back on their feet, like I’ve done.