Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Well, that was straightforward! They didn't throw any terrifying statistics at me at all and in fact no one mentioned the numbers at all except to say that the outcomes for full and haploidentical matches are pretty much the same statistics wise. What they did say was that they couldn't find me a suitable match on the registry which I was surprised at, as being white British it gives a very large pool of potential donors to pick from but with my dad being a comfortable haplo match they've decided to go ahead using his cells rather than hold out for an unrelated donor who would potentially be less of a successful candidate. How very interesting!
They are planning on giving me fludarabine and TBI during the conditioning week, with four days of radiotherapy (twice a day) in the run up to the transplant. Because of the haplo match the plan is to then treat with more chemo (cyclophosphamide) on day 3/4 and this is to attack the foreign lymphocytes (NOT the stem cells) and therefore reduce the risk of rejection. Apparently I'm due for a few days of fevers before the chemo and although I'll be hooked up to antibiotics and fluids galore it's going to be the chemo that actually helps to bring the temperature down!
They are anticipating nothing exciting, doing the usual pre admission checks obviously but given my general health there's no obvious red flags or concerns for them other than the expected side effects of treatment and the risk of infection the first few months as it is for everyone. They took three armfuls of blood off of me (through the Hickman line) and that was that! I didn't see the unit or anything but at my next appointment I'll be seeing their physio, psychologist, nutritionist and hopefully the unit itself before going to the Beatson to get all set up for radiotherapy and hear the run down of all the risks and contra-indicators etc. Some talk about moving it forward a few weeks but no confirmation yet so still no fixed date but definitely in to the new year!
Good to read your update and I'm glad you got some good information as to the way forward. As I think I said in an earlier post, I was not told anything about statistics during my pre-meetings, and ultimately in my view, what does it matter anyway - you are a statistic of one so all of that doesn't really give you any real insight as to what will happen for you.
I had fludarabine and cyclophosphamide and didn't have any noticeable side effects, so hopefully you will find the same. I didn't have TBI or radiotherapy so hopefully somebody will be along soon who has some experience of that.
I know what you mean about the amount of blood they take. I can't remember exactly how many vials they took for me, but I remember thinking "am I going to have any blood left after all this!"
It is great they have access to physios, psychologists, nutritionists, etc, those guys are really going to help you through the process and beyond.
Now, as much as it is easy to write and so difficult to do, I suppose it is a case of trying to switch everything off, enjoy the next few weeks and then be ready to get stuck-in during the New Year.
What is a Community Champion?
Hi Kirsty, sounds about spot on for a Beatson SCT 'Talk'. They are the main centre in Scotland for SCT and are at the top of their game so you are in very safe hands.
As I said on your first 'Talk' post I had 2 weeks TBI (Total Body Irradiation) one session a day, but things could have moved on so two sessions a day may now be the norm.......but my fractions were very strong.
The two challenges for me was the thought of the body mould, it was a touch of a mind game and in the end the fitting was done in 15 mins....... I still have my body mould at home (along with my face mask from my second Allo) and use it to clean my paint brushes on :)
The other challenge for me was the hours setting up and it was so bad for my Spinal Osteoarthritis. The treatment time was about 30 mins, the first treatment would always take longer as they get the machine set up to your settings and rechecked....... and I am rather happy with my 6 tattoos!!
My meetings with physio, psychologist, nutritionists and financial advisers were invaluable and they all followed me up once I was out of the unit.
Enjoy Christmas and if you find you are over thinking get your note book out and park the thoughts as in reality there is no point in overthinking things you can not control.....just preparing your brain is the best step forward.
.....my record was 18 or 19 tubes of blood and a blue arm.
Enjoy Christmas x
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi Kirsty ,
glad everything went ok with your first meeting, obviously I wasn’t with Katy when she had hers but she did say it wasn’t as bad as what she’d thought. Katy had etopicide chemo before her TBI, she had the same TBI 4 days. Her session for the positioning etc only took about 1/2 hour but it might be different as Katy had ALL so I’m not sure if they do anything different but she was only in the radiotherapy for about 10 mins each time, a nurse goes with you to the Beatson.
I think you might find that as they have a donor they will probably book you in as soon as there’s a bed available.
Now the ball is rolling you’ probably find it goes quickly!
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