HSCT…. My Next Step

I have some news that I would like to share with you today – I have been offered the (potentially life-changing) chance to have HSCT. This has happened at a time when I feel that I have just come to terms with the fact that I have Secondary Progressive Multiple Sclerosis (SPMS) – a form of MS that currently has no treatment to stop the degenerative disease. Those of you with MS may have already heard of HSCT, there has been some coverage in the UK press about it over the past couple of years – but I am sure that just as many won’t have.

What is HSCT?

All I knew about HSCT before my neurologist mentioned it to me that it was ‘a stem cell thing’.  That’s right, I guess, but it is actually so much more complicated than I realised.  HSCT stands for Haematopoietic Stem Cell Transplantation (or AHSCT – Autologous Haematopoietic Stem Cell Transplantation) and I will let the MS Trust explain it in a way that is better than I ever could!:

The aim of AHSCT is 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. AHSCT uses high doses of chemotherapy to wipe out your existing immune system, which is then rebuilt using stem cells collected from your blood before you have the chemotherapy. The hope is that your rebooted immune system will stop attacking you and there will be no further damage

The term ‘autologous’ means that the patient (i.e. me) is their own stem cell donor.

So the treatment is really the chemo, as it is about wiping out your current immune system (through chemotherapy) and then giving you the building blocks (i.e. your stem cells) back in order to build a new one.

Why Me?

Although my Neurologist has confirmed that I have now moved into Secondary Progressive MS, recent MRIs (one in October 2017 and one in May 2018) have confirmed that I also have active inflammation.  This means that even though there is a lot of old damage (at least 25 years worth!) there is also new damage coming through right now.  This ‘new damage’ is then likely to lead to further disability and symptoms over time.

According to previous clinical trials, you are more likely to respond to HSCT treatment if you have relapsing or progressive MS with active lesions on current MRI scans, you continue to show active inflammation when on a Disease Modifying Drug (DMD), you are early on in your disease (<10 years) and your disability is 6 or under on the Expanded Disability Status Scale (EDSS scale).  In my case, I have progressive MS with active lesions, have tried DMDs to no avail and have been classified as 6 on EDSS. Unfortunately, HSCT has been shown to be less effective for those people with progressive MS who have no active inflammation.

What is the Treatment Process?

HSCT is a 6 part process:

1. Stems cells are taken from the blood after a small dose of chemo and other drugs to encourage the bone marrow to make more cells so they can be more easily extracted
2. High dose chemotherapy is used to wipe out the immune system
3. Meanwhile, the extracted stem cells are frozen for later use
4. The stem cells are reintroduced into your body
5. You are placed in isolation for 3-4 weeks to allow your new immune system to build and to protect you as much as possible from any risk of infection
6. You will be followed up in order to monitor outcomes

Thoughts

Making the decision to go ahead with the treatment has been difficult and it is something that myself, my husband and my family have discussed in detail.  So many thoughts have been swimming in my head:

How am I going to handle time away from my family?

How are the kids going to manage without me around?

Is it fair on my husband, who is going to have to do *everything* – with the house, kids and me when I am back home recovering?

How am I going to cope with hair loss – a likely side-effect of the chemo?

How are my kids going to handle seeing me sick?  I am already, but it will be much, much more obvious due to the fact that I will be in hospital and will have to recover at home.

Will it run smoothly?  The mortality rate is currently at 0.3% and those of us with mobility problems are apparently more at risk of infection (according to the haematology nurse I spoke to).

Will it stop the MS in its tracks?  If it does so, will this be permanent?

So many questions.  I do know that HSCT is not likely to change my level of current disability; it doesn’t ‘fix’ old damage.  But the hope is that it can treat my current inflammation and, most importantly, prevent any new inflammation from occurring.

And, ultimately, this is what has made me decide.  Because MS is a slow, insidious disease that has taken so much away from me… my mobility, my energy, my ability to be an active parent, an equal partner, my working life, my ability to dance, to run, my independence, spontaneity… and I would do anything, anything to try and stop it in its tracks.  This is my anything.

I plan to update this blog as time goes on.  Treatment is meant to start in a couple of months but I believe that I have to undergo some blood tests beforehand to make sure that I am ok to start.  Please keep checking here for any further info which I will update as I go along on my HSCT journey.  I highly recommend that if you want to learn anything more about HSCT, you have a read of the information on the MS Trust website and have a chat with your Neurologist or MS nurse for further information – though do be aware that some treatment centres will know more than others.

Wishing you all the best