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...
Haven’t been on for a while just having a quick checkup. Finished 4 days of conditioning this morning of fludarabine, cyclophosphamide, and alemtuzemab at st James Leeds. All going well so far with no problems they even let me out this afternoon for a few hours, 2 days rest now then the big infusion on Thursday morning, how long have people had to wait to see some kind of rise in bloods??
Hi again Andy, well done get this far with little drama.
I got out of my SCT Unit 17 days after first Allo and 20 days after Allo number 2.
My counts were very low following my second Allo but I was actually sent home with G-CSF Injections to encourage my counts to come up but they did not want to keep me in as there were a few bugs going around........ but it can be so individual.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
I’m really pleased to read that things are going well. Be ready for a big anti-climax on Thursday - the infusion is really straightforward - but it still brings a huge emotional significance with it.
Re: the rise in bloods, that is the million dollar question. Everyone is different and you could pick up an infection which will knock things out. For me it was around Day 9-10 with both my SCTs and they tend to rise sharply once they do kick-in and you are discharged pretty soon after that. But all you can really do is sit back and wait for your body to do what it needs to do.
Anyway, I hope it all goes really well and please keep us updated as to how you are getting along.
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It’s actually come round as a shock. The ball was rolling but I had a call only 2 weeks ago after not hearing anything for a couple of month asking me to come in as they had found a 12/12 Match donor and wanted to get it done straight away so here we are, The release criteria is no fever, neutrophils at 1 so hopefully not too long
Cheers again andy
It can be so different, we have a man in our Heamatology support group who should be having his Allo just now but his donor did not pass the pre-harvest tests so they are now looking for a new donor.
I just looked back, I went home after Allo No 1 with a count of 1.9 but my counts were 0.9 when I went home after Allo No 2 and this stayed down in their boots for a number of weeks.
I made the Transplant more meaningful by playing the marching music for the Second Gordon Highlanders as my grandad was a piper when at 7.30am on the 1st of July 1916 he leapt over the parapet and under a hail of machine gun fire played the regiment’s marching tune, The Cock o’ the North leading the Second Gordon Highlanders on the opening assault of the Battle of the Somme.
He was a survivor and so far, I am - all the best for 0 day
Well they went in yesterday, took all of 8 minutes.the big anti climax as everyone said. The nurses were shocked to see on the paperwork they had been collected from Frankfurt fresh that morning straight from the bone marrow and flown in same day all courtesy of Anthony Nolan, won’t find out who donor is for a year. Just a big waiting game now all going well so far though
As a man used to say on the ‘A Team’ “I love it when a plan comes together”
Rest up and don’t let impatience get the better of you.
So I’ve been in a month today and on day 20. I’ve started getting a bit twitchy the last few days as on day 16 I was still at 0.04 and all the what ifs start kicking in even though the docs say it’s still ok. Anyway I woke up to a 1.12 yesterday and a 2.27 today so they’re letting me home. I’ve had absolutely no complications or reactions so far so let’s hope it stays this way, get home and start recovering
Well, I am doing the happy dance up in Inverness. Well done in getting through this and on the road to recovery.
Yes, the waiting and 'what if's?' do play tricks on the mind, but these consultants know what is going on and from my experience hit the nail on the head 99% of the time.
2.27 way to go...... following my second SCT they eventually threw me out with my counts at 0.9....... saying "we have a few bugs that have got through the safety net - go home as you will be safer"
The recovery needs patience - don't over do things but at the same time do try and keep some activity going.
On the day I was going home my head SCT Consultant told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training.
50% = when in the hospital going through the transplant process.
60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.
70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.
80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.
90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.
100% = No physical after effects and able to do multiple tasks including being back to work.
Once you are home make a cup of tea and have a wonder through this thread Life after a SCT - A Survivor's Guide where we have collected our thoughts......but it does go in a rabbit Trail at times.
Yay! but take it steady, getting home is, in itself, exhausting! hugs xxx
So it’s day 50 I can’t believe how fast this whole thing has gone. So after 3 units and 1 platelets every 2weeks for the last 3 years this weeks bloods have come back at hb120, platelets 78 and neuts3.6 and PHN has totally vanished from 96%. Transfusion free for 4 weeks and Touch wood not a single hiccup so far. The line has to come out this week as I’ve somehow pulled the cuff through the skin and it’s not really safe as it’s made a bit of a mess. Its weird how high my energy levels are so high after having nearly double the blood count I’m used to, so far so good
Great news Andy and long my this continue.
Sounds great, Andy!
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