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...
In July (at the age of 70), I was diagnosed with atypical CML which came as a bit of a shock!I'm currently on Hydroxycarbamide, and am hoping to have a stem cell transplant at Churchill hospital, Oxford, when they can find a donor (fingers crossed they can!).
Needless to say, I'm finding the prospect quite daunting so, as we get further into the process, I'm sure I'll be posting questions in this group, or just looking for a bit of support. Obviously I hope to be able to offer support too!
Thanks for having me in the group - must go, I'm off to the dentist now with my sensitive teeth!
Hi John, Mike again. Welcome to our little corner of the Macmillan Online Community and I do hope that we will be able to help you navigate this time.
A number of years back 70 would have been seen as high in the age bracket for SCT but not now. As I said in your other post I have been through two Allo SCTs with cells from my brother, yes it was hard work......... but I will be 4 years old next month (lol) and today is actually my third anniversary from being told I was in remission from a rare type of Lymphoma, that in 1999 I was informed that I would never hear the word remission - happy days.
You can have a look through the various ongoing discussions by hitting the 'Discussions' tab near the top of the home page and you can also have a look at some of our stories by hitting our forum names.
When you have a moment, try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
I will bump up a few discussions that you might find helpful.
All the best in getting some resolution with your sensitive teeth as this is one very important area that needs to be at its best before going into SCT.
This is a good bedtime book by Bloodwise 7 steps of Stem Cell Transplant
Aways around to help out.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi John and welcome - but very sorry you had to find us.
All of us here have been through SCT, or are close to someone who has. We will support you and share the hive mind of information we have gathered on our journeys.
With very best wishes
and another welcome! Our lass has been through both types of SCT but is now all but 8 years post allo and doing ok in spite of having a few problems from lots of chemo!
Thanks Moomy - good news about your daughter x
Thanks Mike - you've certainly been through the mill!Thanks for "Bumping" the useful posts, and I'm reading the Bloodwise book, as I go to Oxford for a consultation tomorrow, so want to be well briefed.
Hi John, we all do what we need to do to get through the rollercoster.
If this is your first appointment with a Stem Cell Team you may well have what we tend to call 'The Talk'.
It's where the team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you will be giving permission to your team to take you to the point of being open to very bad infections and side effects.......... then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able.
The talk is not there to scare you, but to honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.
You need to ensure you have a good understanding so I would always advise you have a note book. The note book is the place where you start to take notes and to put down ALL the questions that comes to mind. These questions often come to mind at silly o'clock. Put them in the book and park them until your appointment. The note book also helps you sleep.
The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out and you say 'well, yes I have' A lot of people freeze at these meetings and are overwhelmed by information. So you can go through questions one by one, making sure you take notes. If you don’t understand something you stop the Consultant and ask them to put into a form of language that you understand.
I would also recommend that you always have two sets of ears as the information can come thick and fast and two people can hear far more than one and its someone to sit and have a cup of coffee with after and talk through what was said, rather then rushing home and not unpacking it.
Try and find out what 'Conditioning' (chemo) they are looking to use to tae down your immune system as one of us will have bennthrough it.
All the best for tomorrow.
Thanks for that - great advice!!
Actually, this will be my second consultation at the Churchill, which is about 40 miles away from here.
So I've been through the first chat, much as you describe. Fortunately, my memory's so bad that I felt I had to take a notebook, and that really is good advice. Taking another pair of ears (my lovely wife Marguerita) is also very good advice, as I found when I used to take my late Mum & Dad to some of their respective medical appointments.
I've been through the Bloodwise book again this afternoon, and thank you for the tip about finding out which conditioning therapy chemo I'm likely to have - I'll certainly ask the question.
Tomorrow, I'm hoping to be told that they've found suitable donor(s) and to be given some idea of timescales - I hope I'm not expecting too much. Fortunately, I'm not suffering at the moment (apart from the painful teeth, which I've seen the dentist about), but I'd still rather get it over and done with as soon as possible.
Once again, thanks for the support, and for the good advice.
All the very best,
John - great that you have been able to have your wife with you - my wife Fiona was the level head, the note taker and my rock through all the journey.
I definitely win on the journey front. My SCT Centre was at The Beatson Cancer Centre in Glasgow so a 8 - 9 hr round trip for every appointment. I think we did the journey about 30 times during the SCT process. We did tend to go down the night before as we could get accommodation and be fresh for the appointment first thing then come back up the road and be home in the light.
My second SCT was in October and I could not walk so my wife had to do all the driving, she does not like doing the long runs especially up the A9 during winter with white out conditions...... all memories now.
I was very fortunate that my brother came back very quickly as a 10/10 match, it was a surprise and a big relief. It does take time to search the UK and international register as there so many criteria to achieve....... but a perfect match is not often the way forward. I have talked with a number of folks who have went into SCT with as low as a 5/10 match. But its all about the individual presentation.
Have a good trip tomorrow.
Hmmm, Mike, you will win, on sheer distance probably, but to be with daughter each appointment when needed, plus leaving my own home for a month to be with her each day, I travelled a good 150 miles each way.....often by train, as it was quicker than tackling the dreadful traffic we have in the south to midlands to Manchester.....and upped home to stay at her place for longer spells; still had an hours drive each way from her house each day for a month!
But I’ve never ever regretted it! And it’s 8 years tomorrow that she got Thomas’ stem cells!
Just had a look and over my two Allo’s we spent over 110 nights in Glasgow - amazing what we all do to get through this.
Before the first Allo the folks next door to us asked if we were going on a world cruise (lol) as we had so much luggage. Once we told them about what was happening they said that they would do our grass when we were away.
Happy 8th birthday to her
I spent probably a total of 3-4 months up there over the years......as I often went up for critical appointments plus sometimes shot up when she was feeling down; one evening I grabbed overnight stuff (always had a bag almost at the ready just in case) caught a train and was with her within 2 1/2 hours of her very depressed and tearful phone call (she met me at the station) and she just loved that mum-hug and it made lots of difference.
Have to count the weekend in Berlin too I guess, meeting Thomas?!
Ps, one of the platform staff at the station got to know me quite well over the years and used to ask how she was doing when I was waiting for the train! Met him again a while back and he was so pleased to know she was doing ok in spite of the continuing problems she has!
Good morning John, how did your meeting go yesterday? I do hope that some of the mist has cleared and you have a better understanding of what the plan is.
You will see your thread was high jacked somewhat when your back was turned, but it’s all part of unpacking the journeys we all go on and gives you a taste of what a SCT rollercoaster can be like.
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: