What I wished I had known about MS and HSCT ...

Last year, we heard from Dan who has a rapidly evolving severe case of relapsing MS and chose to have AHSCT transplantation.

Autologous haematopoietic stem cell transplantation (AHSCT or HSCT) is a form of treatment which aims to replace or reboot your body’s immune system so that it no longer attacks your myelin or causes inflammation in your brain and spinal cord. 

One year on, Dan updates us on his post-treatment recovery and discusses what he wishes he’d known before embarking on the treatment.

Firstly, it’s important to say that I hope future patients will suffer less through people sharing their journeys. This is not a negative account as some may read it, but a balanced, honest, first-hand overview of my experience.

Before starting treatment, I read vast amounts of research on the transplant. I also spoke to former patients, who were very honest in their descriptions. They made it clear that treatment outcomes varied hugely.

The treatment itself

The day finally arrived. I met with the HSCT Haematology team in September 2021 and started my first round of conditioning chemotherapy in November 2021. I was treated at St Bartholomew's Hospital (Barts) in London, where the team were fantastic!

I was kept on-site due to travel safety concerns and my partner stayed as my carer. Two days after my first round of chemotherapy, I entered neutropenia, a state where you have a low number of white blood cells in your blood. With this came fevers, migraine, diarrhoea, vomiting and hallucinations.

This was followed by a week of injections to release the stem cells from my bone marrow, which caused severe bone pain, however, I was closely monitored and treated quickly by the team at Barts. 

I had my stem cell collection at the end of my stay, which was done in one day. The process involved a collection machine drawing blood, whilst filtering and infusing an anticoagulant to stop blood clotting. When the process was complete, I returned home where I prepared myself for the next stage of my treatment.

In February 2022, I returned to Barts for the second part of the process. This involved multiple rounds of chemotherapy followed by a drug combination called R-ATG.

This was by far the hardest part of the treatment process for me. I suffered multiple infections and had fluid on my lungs, which meant I required supplemental oxygen. I also had allergic reactions to antibiotics, which I hadn’t reacted to before.

Then came the diarrhoea, vomiting, photophobic eye issues with migraines, weakness and fatigue. My blood platelets dropped, which required treatment with blood transfusions. I even developed fatty liver disease. Overall though I found the dehydration the worst.

At the start of the second week, I received my stem cells back and by the following week, there was talk of going home. Before leaving hospital, I was visited by a nutritionist and physical therapist, who advised that follow-up would be done through my local community specialists. Although I’m sadly yet to hear from these services.

The recovery journey

In time, I was discharged. Recovery at home has been varied and there have been quite a few issues. As hard as you attempt to isolate, infections and viruses are widespread and by March 2022, I was back in hospital to receive several rounds of IV antibiotics for infections. 

Eventually, I began to recover, and I felt really quite well, more so than I had in a long time. Sadly, I dipped again once I came off the steroids in August 2022. I began to progress, this time at a more rapid rate than before the treatment.

Following treatment, I’ve had multiple side effects, my bowel and bladder control are far worse than before and I’ve had reoccurring viral and chronic bladder infections. I am totally reliant on steroid treatments to function and have problems with my eyes, blood platelets that require further transfusions and more regular flaring of MS symptoms. 

I left hospital with a recovery care plan, but unfortunately, that did not materialise, meaning that at times I’ve found it hard to cope and to know whom to turn to for the support and aftercare I needed.

It should be noted that I didn’t have a conversation with my neurologist about whether or not my condition had worsened as a result of HSCT.

However, I recently had yet another trip to the hospital where the staff there identified an issue in my blood called monoclonal gammopathy. This is a rare bone marrow issue that can lead to blood cancer. They advised that this could be linked to the HSCT treatment.

Communication between NHS Trusts has been a big issue. Although my GP, neurologist and specialist transplant team have all been fantastic individually, there has been a lack of communication between teams which has caused delays in resolving issues. This is not the fault of any one individual, but rather an issue with how the separate trusts communicate within the NHS.

Reflections on the success of the transplant

Personally, I don’t feel the transplant benefitted me physically. There is a sense that this treatment is the most efficacious available and that’s what drew me to it. Although, having said that I must be clear that in May 2022 and October 2022, I had my first clear MRI scans in almost three years of MS. The aim of the treatment is to stop further inflammatory activity, which it has done. 
 

The overbearing daily fatigue and brain fog have made it nearly impossible to work from home. I had to take six months off work, which was particularly frustrating as I’m in a job that I’ve trained for my entire life. I wish I were more aware of how much physical therapy would be required to get back to a pre-treatment baseline physically and how that would impact everyday life.

There is also a mental health side to this treatment that isn’t discussed. When I started to feel worse, it made me question if I’d made the wrong decision or done something wrong. These thoughts become even more terrifying with the mounds of misinformation shared on social media.

Mental health support is not allocated post-transplant and I feel this is dangerous. I would’ve been more reluctant to try the treatment if I’d known the potential impact. I’d like to see changes made to the post-treatment roadmap, that prioritise mental health.

You’re isolated from the first day and for multiple months afterwards until immune reconstitution occurs.

The potential future side effects of this treatment and risks are well explained when signing the consent forms. However, no one told me that you could be ruled out from future trials, due to the chemotherapy agent used. This includes remyelination trials and future drug treatments that aim to slow the progression of MS. For me, this is the most concerning aspect, as I would love to participate in other trials!
 

My experience with HSCT has made me realise that I’m incredibly lucky to have my partner, best friend and family as my guiding lights. They’ve given me incomparable support in the darkest of times. I’m always available to anyone who needs similar support and I’m always honest about my experiences.