MJN
Posted by
MJN

My Second Birthday...

MJN
Posted by
MJN
24 Oct 2014

Yesterday was my zero. To be excited and terrified in equal measure is an unusual conflict of emotions but that’s how I felt when a little bag of stem cells was infused into my bloodstream. As a process it’s a huge anti-climax because nothing visible actually happens but it’s the gravity of the moment which makes you stop and think.

Over the last few days the medical team have treated me with a combination of chemotherapy, immunosuppressants and radiotherapy to prepare me for the cells. My own immune system has been battered into submission and space has been made in my bones for new marrow to grow so at the moment I’m vulnerable to infection but less likely to experience a rejection of the foreign cells.

On Wednesday night I underwent the radiotherapy element of what is called the priming process. A few weeks ago I went to the radiotherapy unit for a test dose of the treatment that is used to test how high to turn the switch for my full dose. It’s a very precise operation where radiotherapists aim a beam of radioactive energy at specific parts of the body – the chest, pelvis and thighs where most of the marrow is housed – with the intention of destroying the body’s immune cells within. 

First they make a body mould to hold you in place and enable them to replicate the exact same position for the actual treatment. Lying on a giant beanbag mattress, they use a vacuum to suck the air out of the bag and the remaining polystyrene balls form an imprint which holds you still (you can see me in the mould in the picture to the right; the screen acts like a lens to focus the beam). Then, in the style of Doctor Evil, they use laser beams to establish the correct alignment in front of the radiotherapy machine.

For the treatment on Wednesday I was exposed to 6 lots of radioactive energy, 3 on the front and 3 on the back, for about a minute each time. X-Radiation exposure is measured in Grays. I had 2.68Gy which really isn’t much compared to someone who has a full course of treatment but it is quite intense. I felt grotty – a bit toxic – afterwards but nothing dramatic.

Yesterday I got the new cells – again there’s a picture of the moment – and that was the first step in creating Me V2.0. Understandably there is strict confidentiality in place for the donor but I do know he’s a 30 year old British man who has chosen to do a great thing.

First the cells arrived in what looks like a Dalek because they have been frozen. Most donor cells are given fresh but because of the delays I had with infection they were preserved. They come in small bags – 4 in my case – and are placed in a warm water bath to defrost. After that they’re infused like any other blood product. It really is as simple as that. The whole process took about an hour.

As you can probably tell, I’m totally exhausted and not really finding writing this very easy but I wanted to explain how things happen. I’ll be back on form in a couple of days to explain how the cells begin to develop into a new immune system for me.

To leave you with an idea of how big the changes in my body will be, when the new cells have totally taken over I will adopt the donor’s blood type meaning I’ll change from O to A. That blew my mind!

Thanks to everyone for the messages of support - it means a lot.

For more information on stem cell transplants go to the Allinex website  http://www.allinex.org/

 

If you've recently been diagnosed with Hodgkin lymphoma and have yet to receive treatment you could be eligible to take part in a new clincial trial. Read more here.

Comments

Anonymous
24.10.2014

Love the beard Mr N
Grow stem cells, grow xx

24.10.2014

What a striking photo! And an amazing insight into the experience of a stem cell transplant. Thanks for sharing and good luck. Keep up the blogging, it's been a great series.

Paul

Anonymous
24.10.2014

Keep going Mark, keep going.

Anonymous
24.10.2014

Wow! That is truly amazing stuff and I didn't know about the change of blood group. Leaves my mouth slightly ajar in wonder.... You are awesome xx

Anonymous
24.10.2014

Thanks Mark for your blog! It's brilliant and so informative and interesting. Charlie and I just got back from visiting my brother and family and friends in Philly. Many folk asked about you and we have been thinking and praying for you. We are really pleased to read that, at last, you have had your transplant. Happy Birthday! Love, Kacey xx

Anonymous
24.10.2014

That was a fantastic insight - Noah's a bit concerned you may turn into a darlek! We're praying it's all gone well - take care

Anonymous
24.10.2014

Hi Mark
Thank you for making the time and taking the effort to post when you must be exhausted like I can't imagine. I read the info on the allinex website about the process, but couldn't really get it - the piccies and your explanation give me an insight now as to what actually happens ... very weird and cool and scientific and incredible and futuristic! love the piccie of the dalek - everything is so incredibly high tech and then there's this little thing on wheels which basically contains your new immune system. i signed up to be a donor when you got ill and kind of hope one day I'll have the privilege of being able to do that for someone. i wonder who your donor is. this is possibly a daft question, but when you're better, will you be able to donate your (new) blood?
we continue to pray for every day, along with hundreds of others, and if it's OK, I'll share your blog again to keep them up to date with how you're doing rather than trying to explain it myself.
hope you get some rest tonight. love to you both, Debs and Nick

Anonymous
24.10.2014

Mark, this generous and incredible insight into your treatment is just amazing. Keep going, we are all behind you, Marie xx

25.10.2014

I had my own stem cells transplanted over 5 years ago. It was the toughest part of all the treatments I had, and I caught 3 infections while in isolation. It was quite amazing seeing the dalek arrive and I was so excited that at last I might be free of Hodgkins.

I hope your transplant is a success. I always celebrate my transplant day, and hope that you can too.

Best wishes

Louise Smith

Anonymous
25.10.2014

Wow, I can't believe you change blood group! Hope you are resting well and we are sending you lots of cyber hugs from Devon to keep you going xxx

Anonymous
27.10.2014

Hi Mark,

I've just been pointed towards your blog and wanted to say hello, wish you all the best and thank you for such fabulous posts!

I find it hard to believe it's now 215 days since I was in a very similar place to you, receiving stem cells from an anonymous donor (also a 30-year-old British man, funnily enough) on Day Zero – at the time I was too busy focusing on each day as it came even to think about reaching this point. But I have!

I engrafted on Day +10 and would have gone home a couple of days later, had I not picked up the flu: fortunately it was a relatively mild strain (I've since had a worse one that would have meant curtains had I picked it up in those early days) and I eventually shook it off with my meagre collection of lymphocytes. I went home on Day +16 and, remarkably, found myself in Brussels for lunch on Day +98 to celebrate my birthday – two weeks after the doctor had said I probably wouldn't be able to go abroad for at least six months.

I could tell you more, but everyone's experience is unique and, more importantly, I'd be here all day if I tried. Suffice to say I'm incredibly grateful to have this extra chance afforded by my donor and the transplant, and am doing all I can to make the most of it!

I've always felt lucky both to be a natural optimist and to have incredible friends and family around me; I'm so glad to see you have your own fantastic, positive approach to help and support you, as well as a great network.

All the very best, Mark – I'll make sure I keep following your fantastic posts. If you do ever want to see how my first seven months have gone, I blog about my experience on http://betterfools.wordpress.com, although I've been a bit lax recently in keeping it updated!

Take care,
George

Anonymous
27.10.2014

Amazing - both the info you share in the blog and you - amazing!

30.10.2014

Hang in there, Mark! I second the shout out to your beard - top effort! Will get round to that Catch22 playlist later so you'll have another to add to your ecletic collection!

30.10.2014

Hi George,

Thanks so much for posting this. I, too, went through the BMT route 10 years ago and would have really appreciated hearing from someone who's also been through it all and come out of the other side. Was gutted I didn't get the opportunity to meet you at the Connect Event last week - I was suffering from a bout of man flu and didn't fancy bringing that to the event.

Enjoying your blog, too, which is a great read and it's wonderful to hear that you're doing so well. Long may that continue!