Facts and figures about stem cell donation

In the process of designing some leaflets and posters to encourage more people to join the stem cell register, I discovered some startling statistics I thought I would share! Unless you have had any personal connections with someone needing a stem cell transplant it is unlikely that you have heard about it or understand the process. 

Every 18 minutes In the UK someone is diagnosed with a blood cancer and every 45 minutes it takes a life. Not everyone that has blood Cancer will require a transplant and some can be treated and cured with chemotherapy or a combination if chemotherapy and radiotherapy. 

Only 30% of patients that need to have a donor transplant find a match within their family ( usually with a sibling ). The remaining 70% rely on the stem cell / bone marrow register. The register started in the 70's by Shirley Nolan who's son Anthony needed a donor, unfortunately non was found and he sadly died however Shirley continued to build and grow the register and the Anthony Nolan Trust was established. Anthony Nolan do an amazing job in the Uk recruiting and managing the UK register. Earlier this year the charity Delete Blood Cancer was established in the UK to help recruit more donors. No matter which way you join up you will all end up on the one central UK register. 

There are currently around 400,000 people on the UK stem cell / bone marrow register, this is great however it only represents less than 1% of the UK population?!? Half the people waiting for a transplant never find a donor in time. This needs to change! 

Right now in the Uk there is 1600 people waiting for a transplant and 37000 in the world. They just need 1 bag of stem cells that once donated could go in to save their lives? Unlike an organ, the donor won't miss them! 2-3 days after donating the donors body will have replenished its stores. 

Unlike with blood where you can have any blood that is the same blood group as you, matching for stem cells is more complicated. It is called human leukocyte antigen (HLA) typing. There are over 8500 different markers and we each have 10.  As you can imagine there are millions and millions of different combinations of these. In order to be a match patients with donors for stem cell donation they need to have 10 matching markers ( although transplants can be done if 9 markers match, they are just statistically not as successful ). 

I am now trained via delete blood cancer to sign people upto the register ( via a quick form and a cheek swab ). Posters and leaflets are at the printers and im ready to go! If you are between 17-55 you can apply at www.deletebloodcancer.org.uk or even better if you can get a group of people together eg work colleagues, friends, Dance groups, sports groups etc let me know and il will come down. 

90% of people on the register will never receive a call but if you do this is a picture of someone donating their stem cells, doesn't look too scary does it! 

My radiotherapy

I'm over half way! Today is number 9 of 15 so I'm nearly there! Up to now it's been a very easy painless quick treatment that almost feels like it can't be doing anything?! The most time consuming bit is having a daily appointment you have to go to. 

Once your there it's very quick and I've mastered the stripping off and getting in to the correct position very well! I lie with my arms above my head and the radiologists have to line me up to the exact same position each time. I can't be more than a few millimetres out. 

In order to do this I have 3 small tattoos. One at the bottom of my sternum and one on each side of my ribs, using these and some green light beams the radiographers get me in the exact position and I lie super still. That is the most time consuming bit as the actual treatment is a 15 second blast from underneath me and a 17 second blast from the too then I'm free to go! 

The side effects are accumulative and up to now I've had none, although I can feel some internal burning today. Side effects peak shortly after the radiotherapy course has finished then get better in the following week or two. 

My skin still seems ok but will soon get a little tender like it would If I was sun burnt. I will get that front and back. The majority of my pain is anticipated to be in my oesophagus so that will be raw and at the moment can be compared to reflux. I have paracetamol liquid which I've been advised to take half an hour before eating to help with pain. 

Usually they try and avoid important things in your body as not give any radiation to organs. As my heart has a little tumour inside sat by a valve my heart has to be radiated. This isn't ideal and you would always try to avoid it but if all the cancer isn't gone it will just grow back and all this will be for nothing. My lungs will also get radiated as we can't move them out of the way! This means I may have heart disease sooner than I would have and may have things like scaring to my lungs which would rule me out of the 2014 London marathon but I'm happy to take the long term side effects as the name suggests long is good! 

Radiotherapy isn't usually used as a curative stand alone treatment for non Hodgkin's lymphoma however in some cases of Hodgkins, radiotherapy has been shown to really reduce the size and occasionally achieve a full remission. ( this would need to followed up by a stem cell transplant ). 

My tumour hasn't acted like a normal ( primary mediastinal diffuse large B cell ) non Hodgkin's lymphoma and after biological testing has actually been show to be genetically more like a Hodgkin's lymphoma. Working on this assumption they are hoping I may see some good response from radiotherapy. 

Unfortunately there is no way to see if it is working till you have finished treatment and waited a period of 4 weeks for a PET scan! This is because the effects build up over time and are still working after actual treatment days are over. You need to give chance for the body to 'cool down'. 

Once we have the scan results we can make a plan of action!! The action plan is to get me into some form of remission whether that be complete or a good partial remission, ( pet scan negative or very close ). There is no way of knowing how my tumour will respond to radiotherapy as we haven't tied it before and unfortunately is all trial and error.

The suggested plan after radiotherapy is to try a chemotherapy drug that isn't licensed for patients with Non Hodgkin's Lymphoma. It has however been shown to be amazing in patients with Hodgkins Lymphoma showing a good remission or partial remission in upto 75% of patients. As my tumour is so biologically similar it is hoped it could have the same effect on me. The drug will only work if the tumour has cd30 receptors on the tumour, only 15% of non Hodgkin's tumours have these receptors, luckily including mine! 

Even if I was to achieve a full remission with radiotherapy/chemotherapy I would still need to have a stem cell transplant. That is the only thing that will potentially cure me long term.

So that the plan of action so far! Xx