how to be a bone marrow donor

Now i am a self taught lymphoma and stem cell transplant professor ( for strangers reading this, i do not hold any qualifications and may be over estimating my knowledge a little).I wanted to spread some awareness of things that people don't know much about. Lymphoma being one of those and stem cell transplants being another.

So my aim is to demystify these things a little! i will start with finding donors for people waiting for allogenic stem cell transplants,
Bone Marrow Donors...... has that always sounded a tad terrifying? It did to me i have to admit but when i gave blood i was a brave girlie and went on the list. I secretly hoped that no one would ever ring me as all that; hospitals, general anaesthetics, bone drilling and marrow sucking didnt sound like my cup of tea. i was never called and now i've been chucked off the list as i am no longer desirable!

Now with a little knowledge and 11 years older i realise that being a donor isn't that scary after all! You just need to get on the list and then in all likelihood you
will never be called. If you are called you would be asked to have a further blood test to double check you are a match with the person waiting for a transplant. If you were and decided to go ahead your cells would be collected.

Bone marrow donors are the same as stem cell donors. The transplant i will have can be called  a bone marrow transplant or a stem cell transplant. Traditionally bone marrow was removed directly from donors under a general anesthetic and actual bone marrow was removed via a simple procedure and that was infused to the patient. With advances in technology very very few collections need to be done by collecting bone marrow. The preferred method is collecting stem cells from your bloodsteam this takes 4 hours and no anesthetics or long hospital stay. You will have a daily injection of G-CSF (granulocyte colony stimulating factor) for the 4-5 days leading upto the harvest. I have these each chemo cycle and they are a pre filled syringe with a tiny needle ( like insulin needle ) that you can give yourself in your tummy or a nurse will come round and do if you prefer. I've never had any side effects but the ones listed are mild flu symptoms or leg pain, this is mild and may last for a a couple of days. The G-CSF encourages your bone marrow to produce stem cells and encourages them to be released into the blood stream so they can be collected easily.

On the day of collection you can eat and drink normally and go into hospital. you have a needle in one arm and a needle or a cannula in your other and blood leaves one arm and goes through a machine where it is spun, the stem cells go into a bag and the rest of the blood gets returned to your other arm. At any one time there is only 160 mls of blood out of your body and in the machine so you should feel fine although some people feel a little light headed. you have to sit still for 4 hours but are sat in a chair and can read or talk to a friend. When your 4 hours is up your free to go.......... that is it. You may have just potentially saved someones life!

Your stem cells are frozen in liquid nitrogen and defrosted on the day of the transplant, they are given to the patient over 40 mins and that is that ( i will cover that in detail next time)

I hope that sounds a lot less scary than my perception!

Less than 30% of people find donors within their families so rely on strangers. There is a 25% chance that each sibling you have may be a match however other members of your family are not tested routinely as not likely to be a match.  Currently there are 400,000 people on the uk register and so far 8000 people have been matched and had transplants. If there are no donors found in the uk then an international search is done which looks at 12 million people on registers around the world. At any 1 time there are 120,000 people in the world waiting for transplants. ( thats the statistics out of the way!)

How do you get on the list ? In the UK the Anthony Nolan trust do an amazing job of recruiting and managing a proportion of the register. If you are between 16-30 and weigh more than 50kg you fill in a form online at www.anthonynolan.org they send you a pot you spit in it and post it back, and thats it your done you will stay on that register till your old! If there was a choice of donor younger people would always be chosen first so that is the age group the Anthony Nolan trust focus on.

Delete blood cancer are a new charity in the uk that are working alongside Anthony Nolan and can recruit people 17-55 onto the register. Again this is a simple process that involves a cheek swab. You can apply online and te swab is sent to your home to do and return www.deletebloodcancer.org.uk

The other way of getting on the the British Bone Marrow registry ( if you are between 18-50 ) is to go and donate blood ( at any UK blood donation site ) and when you do tell them you want to be put on the register and they will send an extra sample of blood and you will be placed on the register and stay there til your grey and old . www.nhsbt.nhs.uk/bonemarrow

Hope that helped to make it a little clearer?

Meeting with the Transplant consultant

We went for a meeting with the transplant consultant yesterday. We thought it was just an introduction and for him to explain what we already knew. It turns out it was a little more complicated than that.

The meeting didn't start off well, I really fancied a diet coke and Rick went for one and came back empty handed? The consultant then turned up with his can of diet coke and made me look at it for the whole meeting. I was tempted at one point to ask him if he was actually going to drink it as if not i gladly would of. Thought against it seen as it was our first meeting.

That was the simple bit of this update, the rest gets a bit heavy and a bit complicated so leave now by all means.

I had thought it was a given that i would be having an autologous stem cell transplant, ( a transplant using my own cells ). Although this is still complex and not particularly 'nice' it was manageable and recovery after was quick ish and i could have thought about work within 3 months. The Dr explained that with practically everyone with lymphoma this would be the plan, however he was concerned that my disease was just too aggressive and even with an autologous transplant the chances of the lymphoma coming back after were very high.

He suggested that we may need to consider an allogenic stem cell transplant, ( a transplant using a donors cells ). This is a much bigger more complex procedure and if i had it there would be a 30% chance i wouldn't survive the actual transplant. I would be on anti rejection medication for life ( carries its own risks ),  wouldn`t be fit for work for at least 12 months, and a high proportion of patients have to live with graft vs host disease for a long long time or forever and can never work. This is where my new immune system from my donor attacks my body constantly. The symptoms can be any thing as depends what its attacking but can be debilitating and render me " proper broken".

Why bother i hear you ask! By taking on someone elses immune system that would fight off ( to a degree) any little bits of lymphoma around = anti lymphoma effect. This means it increases the chance of being cured. So its trying to weigh up the risks vs the benefits.

Just when it wasnt sounding a very nice option he said that most people have a low intensity allogenic ( donor cells ) transplant as their bodies wouldnt tolerate any more, but as my lymphoma is as aggressive as it is, and i'm young and 'fit' ( not sure i'm feeling very fit!) he would like to potentially try a high intensity allogenic transplant.

The other issue with a allogenic (donor cells) transplant is that i would need to find a donor. This can sometimes be easy and sometimes be really difficult. It will depend how common my tissue type is. Its not like a blood test where you are an A- or O+.you get 5 markers from your dad and 5 from your mum so you have 10 different markers. So i need to find someone that has the same 10 as me. Siblings have a 25% chance of being a match but the rest of your family are less likely than the general public.

David is (actually at the time of writing this ), having his blood taken although we are realistic that there is a 75% chance he`s not going to be a match, but you never know! The test takes 2 weeks to come back. After that if im not a match with david they will do an international search and then we will see if its easy to find a match.

The Dr didnt know which route we will take yet as it is dependant on so many things. If we cant find a quick and easy donor ( uk based or europe with a quick collection time ) then i may just have my own cells. If i cant achieve a negative PET scan an autologous ( own cells ) wont be an option as it it almost guaranteed not to work. Either way im glad its his decision and not mine, his life is quite literally in his hands. He better look after it!

On the positive side he said what ever we do we are going to do  we will do quick. He wants the transplant as soon as we have PET scan results which means it may be end of October rather than December

I apologise if you have made it to the bottom as your brain may now be as jumbled as mine! 

A week of eating and sleeping

Chemotherapy was over a week ago now and I've basically just eaten lots and slept lots. No puking for me! I'm so glad. I thought I was lucky last time to avoid being sick but thought I had no chance this time! Kept waiting for delayed effects but they never came.

The tiredness is so overwhelming! I have never felt tiredness like it! But when all you need to do is rectify that is close your eyes it hasn't been too difficult! I had been high on steroids for so long that being dopey is actually quite nice! Been having couple of hour naps in the day but again it's not a hardship.

If I had to have come home and carry on, it would be an impossibility, but I'm so lucky to have super, capable and willing husband and family and friends which have taken over doing everything so I can just sleep off my drugs! 

Feeling a little less tired today however yesterday being at the hospital I was shattered!!! I couldn't keep my eyes open between my 15 minutely observations my body just crashed! I actually looked like a patient lay under a blanket snoozing while having drugs pumping into me, glad I managed the stereotypical look once but hoping i wont be making that habit.

I assume it was more the steroids than the chemo but I developed a food obsession. Or should I say I developed an obsession with my obsession of food, this last week I have been 2 hourly fed! Once I eat I am already dreaming of what's next. So as well of lots of sleeping I've done lots of eating too! I've weaned off my steroids now and took my last lot this morning and already feel less obsessed so hoping to go back to as normal as I can manage under the circumstances.

Not in hospital till Wednesday now. Going to meet with the stem cell transplant consultant and have bloods and stuff then I will organise appointments to have my stem cells collected ( il go Into that another time but is relatively easy and quick ) in the next few weeks. 

My productivity in my creations totally ground to a halt and I have just been pottering around fiddling with making Maddie random hats and things like you do! Today I'm back on it though and I will have some things to send out very soon! 

Salvage chemo ( O-Dhap ) number 1

Salvage chemo number one all done and dusted. I'm trying not to be too smug as I'm lay here at home feeling okish when I was potentially meant to be in hospital for another couple of days managing my symptoms and supporting my broken body? 

I went in on Tuesday at 9 am and had my trial drug which is a monoclonal antibody, in simple terms this drug doesn't kill the tumour it changes how my body works and gets my own body to target the tumour. This given other chemotherapy is meant to work great. It better!! It took 6 hours to go in as has to be quite slow as your body can fight it as are foreign anti bodies. I avoided any major reaction and just needed a half hour break as my throat went funny for a bit.

After that I was admitted to the ward and got a nice little bed in the corner by the window and then my chemo plus litres of fluids and kidney protecting infusions could start, these took 42 hours to all infuse so I was booked up to 3 pumps and took them everywhere I went! As you can imagine with all that fluids trips to the loo with my pumps and wires were very frequent!! 

I sat watching my chemo go in and then waiting to puke..... And waited and waited but it never happened? It can be a delayed reaction but I'm now 60 hours post starting it? ). Every time dinner came I chose the biggest option. No salads for me! Just in case it was the last thing that went down! So had pork roasts, crumble and ice cream, chicken curry, gammon and chips and it was all very yummy. 

I purposely didn't take any snacks in as assumed they wouldn't be wanted but after the first night I sent out for supplies and managed some chocolate hob jobs, haribo and diet coke! The staff were amazing and there was a 24 hour 'bar' menu of hot and cold food at all times and they were always offering you food and drink. It really was like a nice little hotel stay! ( now I'm starting to sound crazy! ) 

I had 12  hourly bloods to keep an eye on my kidney function and they were always normal. I even ended up with a cannula ( for a half hour infusion, then It came out ) and even that was painless and the nurse was very sweet and used a tiny one in the fat bit of my hand then whipped it out. 

I had a noisy neighbour ( snorer! Well it was way worse that a snore! ) she did have tonsil cancer and had the worst radiation burns to her neck that I couldn't complain! But the first night I may have slept 3 hours on and off as did the rest of the ward!! A very sweet night nurse brought me a pair of her industrial strength ear plugs from home the next night and I didn't hear a thing! 

I really can't fault any of the staff at Christies, they will all go above and beyond their job description to make sure your ok. If I got visitors they always got offered drinks, if I was awake in the night they brought me toast, when Madeline visited hey took her off for chocolate then let us have picnic in a quiet room etc. when you asked for something you didn't get a 'huff' and "il do it in a minute" you got an " of course no problem!".

I would like to think I'm that kind of nurse, ( well intact I'm not being big headed I know I am! ). But I'd say although there are lots of amazing nurses out there they do seem to be interspersed with the ones that are maybe not quite so happy at their job, that although very capable at their jobs forget to put the patient at the centre and talk to them! Ask how they are,communicate and smile, it really will make you a better nurse! 

Not sure what else to cover in my first chemo post! Didn't make as many ' things' as thought I would. A cat a monkey  and 2 minion hats? I was too busy talking!! Time flew while I was there!! 

So I'm back home and do feel a little poisoned, a little hung over but certainly not too bad, long may in continue. The cytarabine ( chemo ) is meant to blanket bomb all my cells so my blood cells will be affected this time and drop significantly. So I'm be much more susceptible  to infections and probably need blood and platelet transfusions and my own body won't quite be upto it. Also I am still on a steroid high but I am weaning off those over the next week so by next week il be curled up in bed like a field mouse and be on dry crackers!

Back in hospital at least weekly for blood tests, next week for my antibody treatment then in 17 days il go back and do cycle 2 ( the above again ) and then I will have my stem cells harvested and a ct scan to check Mr Tumour  has shrunk

Oooooo have to mention Mr Tumour ( as I'm sadly very proud of his size and have to share it! ).  I don't generally have any questions for my medical team as have my own fountain of knowledge in husband / super Rick form. But whenever I've had a scan I always want a look at my scan pictures. This time I saw my latest PET scan and although I knew my tumour was back and big as could feel it trying to poke out my shoulder blades as well as my chest was nice to have it confirmed! On the pet scan ( one with all the black bits ) it looks quite square but when they showed me the cross sectional images could see it was very deep and long. It fills the space where my left top lung lobe should be ( from heart up is just tumour ) and my lung has just given up and deflated out of the way. The pic attached shows it a bit, the black circle on left of pic is my normal ( right) lung filled with air and the thing that looks on fire on the right is where my left lung should be but it's filled with tumour. 

Right I promise I'm going now!! It's turned into a longer post than I anticipated but that won't surprise you as I struggle to shut tho once I start! 

 

High on steroids

I'm high on steroids, it's 5 am and I'm lay wide awake while the other 8 things in my house sleep soundly!

Been taking 10 tablets ( 50mg ) prednisalone for over 2 weeks now to stop the side effects of the disease eg tiredness and breathlessness. They really are he most amazing drugs I have ever had, EVER.

I have never done so much in such a short period of time! Every day lasts forever as up at 7 and can't go bed till 1 am Ish and even then lucky to sleep inbetween those hours. You have so much motivation and drive! Today alone I've made some baby toys ( sewn ), read half a book, visited work and friends, done food shop, out for lunch, DIY at a friends house, phone calls and paper work, popped to few shops for bits I need for my admission on Monday and took computer to be fixed. I wouldn't normally get all that done in a week! House is all freshly painted and actually tidy most of the time??

The down side to steroids is you can't 'come down'. You close your eyes to rest and it feels like you have just had 6 cups of coffee hit your blood stream. Also can make you moody ( although Rick wouldn't dare point that out! ). They make you feel like your blood sugars are low ALL the time so have to eat constantly. My face is trying to turn into a 'moon face' too, not the best look out there.

Despite the downside I do enjoy my little time on steroids and if I wasn't on them I would really struggle. Two weeks ago just getting up to answer the door left me out of breath and needing a nap!

Only on these till Sunday then I will double dose for 5 days to help me through chemo and then wean me off and my productivity levels may crash for a while! Must do a final coat of paint on the front door before then!

Well the sun is up and I don't think il be going back to sleep, up shortly for my PET scan. Mmmmmmmm but what to do now?

Bone marrow number 2

As the title suggests I had my second bone marrow yesterday. I wasn't sure if having previous experience made it better or worse!?! I'm still not quite sure!

I was having the procedure by a different team than last time and had decoded I may as well give sedation a go. Once there I was convinced not to bother and to just have gas and air.

It wasn't the pain I was worried out I was more concerned I would say 'ouch' or pull a stupid face! Silly I know because I know that doesn't matter but stupidly did to me! So my plan was get Into a position where I could cling onto the bars of the bed tuck head in and brace myself!

The first time I didn't expect the pain intensity down my leg and all i remember is gurning this stupid face at Rick! He assures me that people do much worse and scream and wriggle around the bed but I was determined not to do the ' face'! . Knowing what was coming I was able to put on my poker face and instead I I clung onto the bars and wiggled my fingers and eventually it was all over and really wasn't that bad. As with all things the thinking about it is so much worse and I had made sure I was billed before and hasn't even thought about it.

I loved my gas and air this time. Again first time I thought it would make me feel sick like it did in labour so I didn't use enough where as this time I well and truly used ( maybe over used! ) it and it was good! You just lie on the bed with the room spinning and feel like your floating, almost worth the procedure just for that!

If this one is negative I won't need another one with this treatment plan so fingers crossed!