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...
I managed to eat a few mouthfuls of food breakfast, lunch and dinner, and made my way through with just one ensure so that is positive! Also, the team here have been lasering the inside of my mouth to help stimulate the healthy tissue under the mucositis and today decided I probably wouldn't need any more and I have to say my mouth and throat DO feel better! I've massively reduced the oral morphine from three a day to one.
Had a few wee bumps along the way, including one sudden breathless allergic reaction to platelets (which has never happened before!) Today, I woke up with nettle rash all over my torso, a super swollen and very red/hot face so they've changed my antibiotics (again, never reacted to antibiotics before) and tonight the rash is still there and has now spread down my arms but we're holding off on the piritin until my platelets arrive, most likely in the middle of the night. Also, upper respiratory cough and constantly coughing up sputum which no one told me could happen but the doctors here don't seem overly concerned about mainly because my lungs sound clear and because whatever I'm coughing up is clear. Lovely!
Temperature has been relatively fine although wee spikes up to 38° over the past two nights and probably again tonight which we're currently dealing with by using dispersable paracetamol. Most of my tablets have moved over to liquid forms until my counts start to rise so now it's a case of antibiotics, had my chest xray done this afternoon, and riding it out.
Eyes are definitely on the prize as it's about a week from now I should see something happening with the neutrophils so I'm excited that I'll maybe be home before the 1st of March!
Hi Kirsty, this will sound rather odd to people who do not understand this SCT process but progress is being made, yes fires to fight and continuing to expect and deal with the unexpected (and that is just your team) but you are getting close to the turning point where this all starts to kick in and the all new you starts to grow ((hugs))
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
BYea Hi Kirsty,
glad to hear you’re doing ok- sounds pretty much par for the course- Katy found her neutrophils started to rise around day 10I think to 0.2 or something but they very quickly rose once they’d started and I think it was day 20 when she got home, her neutrophils went up quick but they like to assess for a few days-they went up to 2 and she was able to go down to the cafe with nic or us just to see how she was doing before she got home- a bit like a transitional period! But the end is in sight!
it will be interesting to know whether your neuts have made a teeny bump from the bottom as your mouth is improving? I haven’t heard of the lasering before but hey, they are developing new ideas all the time!
Youre doing fine, keep battling on and the big goal is getting nearer!
My neutrophils and WBC count is 0.1 today so they think the rash is due to engraftment syndrome, and they'll keep me on the antibiotics just now, keep an eye on me but then if need be they'll treat with steroids to get it over and done with.
0.1 on day 13 is crazy for cord blood, it's usually day 21!! Hurrah! They did say it could be a false dawn but I hope not, hopefully by this time next week I might be able to leave the room!
Oh well done
It was T+18 for me to get to 0.1 then they put me home at T+20 at 0.9
Yes moomy, The Beatson (QE) have used laser treatment on SCT mouth issues for a number of years now, I meet a few folks when I was in who had it done as these were the folks that the Caphosol did not do the full job and it worked well.
The laser has turned my mouth around and the whole inside of my mouth is pink and smooth, hopefully back to normal asap!
Haha, yay! I had a gut feeling that your counts were on the up as you weren’t so sore, Kirsty, that’s terrific news!
Day by day, little steps now.....
I'm now day 17 and neutrophils are sitting at 0.3! For cord blood I'm sitting quite a bit ahead of the curve (to the tune of almost two weeks!)
Unfortunately I've also come down with some engraftment syndrome so this weekend hasn't been the comfiest. Also, during a CT scan which the radiologist demanded a cannula be fitted for to inject a contrast dye, said injection of dye burst my vein in my arm. Now, I have notoriously crap veins and that was BEFORE chemo, so my one and only access site is no more
Oh Kirsty first some Highlander ((hugs)) x
More than anyone else your ‘all new you’ is literally more new born then the rest of us, but this is great progress.
This will always sound rather odd when we say some GvHD is a positive sign as it shows your new cells are fighting to take control.......but we don’t want it becoming severe x
You still got a Hickman Line in? I was the same when I was sent for CTs, I asked a few of the Radiology staff when did they not use the Hickman Line to put the contrast in?......no one could give me a satisfactory answer!!...... just more vain issues
I asked this too, apparently it's something to do with the pressure at which the dye is injected is not always compatible with the Hickman line. But they've now at least confirmed that I can keep my line in until after my 100 days are up, does anyone know or remember when they stopped needing transfusion support post SCT?
I was told that as well, they couldn’t give me a good answer when I pointed out that the Hickman Line walls were just as thicker as that of a line into a small vain in the arm and the Hickman was in s larger vain!!! but it could be that they enjoy putting them in
I had a few transfusion during after my second SCT when I was still in the SCT unit. Then had a few transfusions (2-3) during the first month post SCT.
But from day 284 I had more GvHD and it effected the Bone Marrow and it was not producing what I needed so I was on transfusions every 10-14 days for three months then it just corrected its self
I had trouble with dye gunging up one of my Hickman line access lines. Fortunately I had a triple one installed. It did eventually clear. I'm told it should be ok if cleaned throughly after use. But the ward staff prefer it if they use a cannula and avoid the problem.
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