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...
Bumping for those starting the SCT journy.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Useful information for any who may be going through BEAM or LEAM
Thank you again for this. By my reckoning my Melphalan day will be the Sunday after next. I have an industrial quantity of ice poles already purchased in anticipation!
How long after the infusion does one need to continue sucking? Hours or days?
As an aside, this does made me smile a little! I used to be an English teacher and cannot help but remember Christina Rossetti's 'Goblin Market poem: "She sucked and sucked and sucked some more / She sucked until her lips were sore". The poem is about the loss of innocence and sexual seduction! :) Makes me giggle!
Your mouth will be sore for several days. I found the dryness continued for several weeks. But it does help to keep using the mouth washes as well. My spell on ice poles coincided with last summers heatwave. I had lots of visitors that week because my room was so much cooler than outside.
If you possibly can, continue for a good half hour after the infusion ends; till yes, you can barely talk and have lost the sensation of all control of your mouth! Daughter managed all that for her first dose of Melphalan when she had her auto, but was not as conscientious when going through her allo (and also believed it was a smaller dose as the chemo was ‘reduced intensity’) so still got a sore mouth and throat but managed to continue eating/drinking small amounts of build up type shakes with ice cream whisked into them.
As soon as your white counts begin to rise again the problems you might get all ease off.
Bumping for Mark
Giving this thread a bump for the new folks starting the SCT Journey.
I noticed that I had not added to the thread. I had Melphalan for my second Allo and I did well with it..... no sickness or mouth issues.
I was not on the forum at the time but my team were 'on it' from the start. So 30mins before the start of the M infusion they gave me some Paracetamol 'why the Paracetamol?' I asked 'You will find out' and also put a freezer bag full of Ice lollies on my table...... so I chain sucked these ice lollies for the 30mins before, during the M infusion that took about 30mins then was told to keep going for a further 30mins. I lost count but must have had 30.......... and the mother of all freeze brains every...... hence the Paracetamol.
Since helping on the forum I have found out that some SCT units don't give ice lollies!!!!! so just go out and get them and the ward staff will put them in the freezer until you need them.
The two weeks leading up to the M and all the way through until I got out of the unit I was using a two pack oral mouth rinse called Caphosol. So I set my phone for every 3 hours to make sure that I was doing this all day. My head consultant said that the Caphosol was rather expensive but if I used it correctly it would save me a lot of mouth pain and having to be on other drugs to over come any bad mucositis. I did well with only one very small area developing and it was not a problem.
Once mucostis gets past a certain point the Caphosol will not be so effective so more specific anti-fungal/painkiller treatments need to be used to get the condition under control.
So what ever they give to to use, use it EVERY day as it does help.
A thread bump for those on the SCT Journey and for those who have been through the SCT tunnel please add anything that would be helpful for others looking into the tunnel.
Bump for Helly123
Noticing that Mike has bumped this very useful thread, I am reminded that I did not feedback about my Melphalan experience back in October 2017, after discussing the benefits of icing, for which I apologise.
I can report that I did suck ice-poles for Britain, before, during and after the Melphalan. I had no mucositis whatsover following the Melphalan: no mouth or throat soreness, ulcers or even dryness and no obvious change to the way the gut was behaving. I already had diarrhoea from the earlier conditioning chemo (and gut still requires TLC a year later and subsequently developed GvHD, though is heaps better than it was), but I am not aware that the Melphalan made it any worse than it already was.
A specialist nurse on the SCT unit's father had also been a SCT patient and had also iced before Melphalan. She told me that he, too, had not suffered bad effects from his Melphalan.
Thanks for this, all goes to prove how useful the ice can be!
Bump for those looking at Stem Cell Transplant.
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