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MY MS STEM CELL JOURNEY

AUTOLOGOUS HAEMATOPOIETIC STEM CELL TRANSPLANTATION (AHSCT)

Hi my name is Mark and this is my Stem Cell Journey. Having been influenced by fellow MS sufferer John Carter with his story 'John's Dance with MS' earlier this year (from Moscow) I thought I would give my friends, family, fellow ms sufferers and the world the British NHS spin on the mystical stem cell transplant procedure first hand. Basically the aim of AHSCT is to 'reboot' the immune system to stop it attacking the central nervous system, similar to rebooting a computer.

Throughout my journey I hope to keep this site and blog up-to-date and contains my own personal thoughts, feelings, views and experiences. I apologies in advance for any typos or inaccuracies. I'm only human? ish!

I hope my blog gives you a small insight into the MS stem cell transplant process and how I dealt with it. I am sure for some it will bring laughter and tears but hope ultimately you find it informative and enjoy exploring my journey.

Mark xx

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A bit about me

The Roots

So a little bit about me. I was first diagnosed with relapsing remitting multiple sclerosis (RRMS) at the age of 30 when I lost partial sight in one eye along with strength and mobility in my legs.

After a few MRI, CT scans, lumbar punctures and a long period of waiting I was eventually started on Rebif (interferon beta-1a) where I had to self inject every other day. Now that’s an experience in itself?

After 18 months I was moved onto Tysabri (natalizumab), which is a monthly IV infusion and turned out to be an awesome treatment for me. Unfortunately after six years of Tysabri my body had become resistant to the treatment and I spent the last 18 months having continual infections that in turn induced MS relapses. I had everything... kidney infections, bladder infections, UTI's and tonsillitis so many times that I had my tonsils taken out to reduce the risk of further relapses. So when my neurologist suggested that I might consider stem cell therapy, my brain went into a different gear.

I knew that the criteria was very tight and that I would have to jump through several hoops to even be considered but the long and short of it was that the Medical Committee thought I would be a good candidate – this was after having to get worse first before I could get better again.

The decision to take the transplant route is not something that anyone should take lightly. I had spent a lot of time researching the ‘trial’ treatment looking into the actual processes, possible outcomes, side effects and impact on life in general.

I can honestly say that this has to be the biggest decision of my life so far as I knew it would have a massive impact on not just my life but also my family, friends, work and the dog’s (if and when we get one?).

We think proposing to a loved one, getting married, having a baby or taking on the first mortgage is a big life decision, but being married with two beautiful boys (20 months and 3 and half years), a full time job, mortgage and being offered the chance to halt the MS by going through a trial treatment beats the lot hands down. I can't even put into words the emotions that went through me making that decision along with Olivia my wife; there were so many things to take into account and further questions I had like:

•How would Olivia and the boys cope with it all
•How would I deal with the massive amount of Chemotherapy needed
•How do I prepare myself mentally and physically
•What happens if it doesn't work
•I need to ensure all my estate is in order if it doesn’t work and I die
•How do I prepare work for the amount of time I could need to be off and who's going to cover my job
•How soon will it happen and how long will it take

Now all I had to do was wait for 8-10 weeks until the stem cell consultant at Hammersmith hospital gets in touch. What a long wait this was going to be and here begins the start of my journey.

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How did I get here?

I believe you must bring your whole self to the table if you want to thrive in today’s crazy world; your personality, your sense of humor, and most importantly, your heart. Throughout this journey I have tried to remain open minded but focused on the outcome - the potential halting of MS progression. All of these elements brought me to journal MY MS STEM CELL JOURNEY. It is important to remember that this is NOT a cure, although many case studies have shown an improvement in some way to many ms sufferers lives which is a cure to them.

Remember... Once you are on the rollercoaster you need to hold on, give yourself over to the professionals and hold on tight... You WILL get through it.

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Stem cell committee and consultant approval

After meeting my Haematology consultant Dr G, HSCT coordinator and clinical nurse’s it was off to hospital to have my first introduction to chemotherapy - a very daunting experience for those who have never experienced anything like it before. I suppose I had an advantage over many, having spent the last 6 years being infused monthly with my previous MS treatment (Tysabri). Even having a fainting moment towards the end of my initial consultation with Dr G (not a good start but later found out I was carrying a bladder infection) I was still given the go ahead for the transplant.

Pre transplant Stem cell mobilisation - Stage 1

The stay in hospital lasted 48 hours where I spent 24 hours on a slow drip containing MESNA (a drug used to protect the bladder and kidneys from the effects of chemotherapy drugs) with fluids and 3 hours on Cyclophosphamide (the chemo drug being used through my treatment and as seen above). The idea is to begin killing off some of your current stem cells forcing the bone marrow into producing new ones. The new stem cells are the ones needed for the apheresis (stem cell harvesting) in 10 days time and once cleaned will be the very stem cells transplanted back into your body.

When you leave the hospital you are packed off with a cocktail of drugs to continue helping the good stem cells to move out of the bone marrow and into the blood stream. I was given:
•Ciprofloxacin to take every day which is an antibiotic to help prevent any unwanted infections
•Ondansetron and Domperidone two different anti-sickness tablets depending on how sick you feel
•finally a drug called G-CSF (Granulocyte-colony stimulating factor) which is glycoprotein that helps to stimulate the bone marrow into producing granulocytes and stem cells releasing them into the blood stream.

The G-CSF is a tricky one especially for those who don’t like needles as its a daily subcutaneous injection into the stomach, which you will have to do yourself or get someone you trust to do it for you for the next 10 days. It doesn’t hurt really, its just a sharp scratch whilst you inject yourself into the fatty tissue around the stomach – if you are lucky enough to have some that is lol.

The side effects I found were extreme bone pain (where the bones are swelling and beginning to release stem cells into the blood), flu like symptoms, tiredness and fatigue (nothing different there from an ms point of view), fevers, hair loss (yes this will happen) and MS symptoms will worsen which they did. I am sure that there are many other possible side effects but these were the main ones that hit me the hardest.

Stem cell collection (Apheresis) - Stage 2

So day ten is what the whole process is about… Stem cell collection or apheresis. I met my apheresis specialist who introduced me to Faith. Faith is the name of the dialysis machine (as seen above) that would be taking all my blood out, spinning it about like it was at an 80’s disco before separating and collecting the stem cells and putting the blood back into me. It was quite painless although it did make me feel a little lightheaded at times which is normal and you need to keep your arm perfectly still for the entire time otherwise the cannula will pop out which isn't good.

The aim was for Faith to collect two million stem cells within the allotted 4-hour period. If this wasn’t to be possible, I would have to return the following day to resume the collection aiming for the two million mark. If the second attempt also wasn’t possible, I would have to wait for two to three months and start the whole process again. However, Faith came through on our first date and not only collected the required quantity, but went on to produce twenty four million stem cells (as seen above).

“You gotta have Faith”

The not so long wait

The final part of the apheresis is down to the clever people in the laboratory who clean the stem cells then freeze them until transplant day. Now it’s time to sit back and wait for a month until the PICC line is inserted, various chest, lung and heart scans are carried out and an admission date is decided. This for me meant a lot to arrange in a short time… cover at work, an early Christmas at home with my family, various personal admin and finance arrangements such as ensuring my life assurance and pensions were all up-to-date and my Will had been written just in case. It was relentless and something I didn’t really give much thought to prior to this process beginning.

Blog time

From then on it was blog time. I decided to journal my journey to help both with the isolation time and hope that it may be of use to anyone considering this treatment or for people wanting to understand this process a little better. I have tried to protect the privacy of all those individual members of medical staff that helped me through the journey out of respect to them as they all do this for job for one reason… the health, welfare and care of each and every patient and for that you will all remain my hero’s.

Enjoy

If you have any questions please feel free to drop me a note by getting in touch.

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