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...
Our son had SCT last week. ( he was diagnosed with ALL last October)
He has been very poorly over the weekend due to mucositis, he is having great difficulty communicating, he hasn’t been able to eat for 2 days.
im interested to find out other people’s experiences regards this condition.
Many thanks, Mark
I believe Mucositis is very common during transplant, especially if Melphalan is used as conditioning chemotherapy.
I had an Auto in February and had Mucositis of the gut. So bad diarrhoea, tummy cramps (from ulcers) and couldn't swallow as my throat was also ulcered. It hurt to talk also. All of my symptoms were worse about 4/5 days after receiving my cells until my counts came up again. This was about 8 days. I also had sepsis and a UTI during this time. So quite unwell, but my team didn't seem too surprised at any stage.
From what I am aware of, it's again common to stop eating for a while due to the mucositis, so much so that my unit offer an NG tube as standard during conditioning BEFORE you become unable to eat. This is so that it can used for nutrients whilst you are unwell (and they can get it in before the throat is too sore and swollen to be able to).
It can't be nice to see a loved one go through transplant, and I'm sorry that your Son is unwell at the moment. Are you able to see one of his consultants or nurse when you visit? Perhaps they could speak with you more about the process and put your mind at ease at whether or not his symptoms are a 'normal' part of the process..?
Hi Mark Vanners and good to see you have found us and a great answer from HopefulMummy123.
Is see you asked Caroline about oral cryotherapy and I am sure that she will get back to you. with her answer.
During my first Allo SCT my conditioning was 10 sessions of TBI (Total Body Irradiation) - Radiotherapy to all my lymph nodes and bone marrow. I also had Intravenous Conditioning using ATG (anti-thymocyte globulin) and some low level chemo. I had not Mucositis issues apart from a few small mouth ulcer.
My first Allo SCT did no graft so went back the following year for a second where I had FluMalAlem30 Conditioning and this included Melphalan. Melphalan is a type of chemo therapy that is actually derived from Nitrogen mustards and is a cytotoxic chemotherapy agents.
During my 30mins infusion I was required to do the ice pole sucking challenge where it was sucking ice poles 30mins before, all the way through the IV and 30mins after. I still did develop a few ulcers and it was a challenge to eat for a good few months but this was mainly due to me being very sick, ending in ICU a few times with A Fib and after a CT my team found that I had developed "The most impressive Hiatus Hernia"
Having been helping on this Community for 2 years I do see big differences in the protocols used in SCT units were ice is not used with Melphalan. But at the same time for other the ice with Melphalan makes no difference what so ever - I do think is luck at times.
During my first Allo SCT I was in with another man who had exactly the same conditioning and he had full on Mucositis
Both times I had to use a two pack oral rinse I used was called Caphosol. But once the mucositis gets past a certain point the Caphosol will not be so effective and more specific anti-fungal/painkiller treatments need to be used to get the condition under control.
As HopefulMummy123 has said, some SCT Units put in a NG Tube from day one as they expect these problems to happen.
As I said before, this will take time and perseverance but his team are used to this and will guide you all through this part odf the journey.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Thank u very much for your very kind message, I will try to find out more when I visit the Hospital today.
Best wishes, Mark
as your son already has problems, it might help asking for nutrition drinks and get some ice cream whisked into them, that certainly helped daughter when she had problems (hers, she described as feeling hungry but then when she tried it was like knives came out in her throat making it really painful.) Icy drinks and foods (like iced lollies and ice cream) did help. When counts begin to rise that recovers remarkably quickly.
His team should be able to help, maybe they can prescribe the nutrition drinks for him.
sending hugs xxx
Thank u for your kind message.
This is our experience and I'm sorry if you son is in pain but it will subside and hope each day gets better. My husband had SCT 2 weeks ago and did experience mild mucositis but he was adamant he wasn't going to suffer badly and they forewarned us about ice. He sucked on ice continually from just before receiving melphalan, during and after then whilst on IV fluids. He had a few mouth sores like tonsillitis but continued to eat and force calories, drinking plenty of water which was monitored and they were pleased with his intake. This lasted 3 days. Day 7-9 were his worst otherwise he has been okay. Stay positive and keep his spirits up. Hope this has helped.
Welcome to the Stem Cell Transplant Forum Pipistrelle4.
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: