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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia and Myeloproliferative diseases. She'll aim to respond within 2 working days.

Mucositis

Vanners
Posted by

Our son is in Hospital, he was diagnosed last year with Acute Lymphoblastic leukaemia.

He has a stem cell transplant last Tuesday, he has been unwell over the weekend with Mocositis, he can’t eat or speak and is in a lot of pain and discomfort.

is this due to the radiotherapy and could this have been avoided?

many thanks Mark

Mark
Caroline- Macmillan

Hi there,

I am sorry to hear this. Mucositis is a common side effect from both the chemo and the radiotherapy. The team will have given him mouth washes etc. to use and these are very important. However, Mucositis affects most people following transplant in some way or other. It can be so bad that syringe drivers maybe required to administer medication such as morphine, so don't panic if you see the nurses coming with one!

The team will contact the dietician to assess your sons needs and provide support until he is able to eat properly.

In answer to your question, the team are aware that our son might be affected in this way and have treated patients like this before. It can be distressing to experience and to watch though, so keep on top of any pain relief and encourage him to use mouthwashes.

I hope this helps, good luck!

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.  

Thehighlander
Posted by

Hi , and a great reply from our Caroline.

I am Mike and I am dropping in past from our dedicated Stem Cell Transplant Forum (SCT) where both SCT patients and carers hang out and support each other on the SCT Rollercoaster.

So sorry to hear the problems Mike is having but unfortunately, as Caroline has said, Mucositis is one of these unavoidable parts SCT and 99% of us will have to go through this and it will just take time for him to get through this part of the post SCT marathon.

I say a Marathon as this is what  I see a cancer + SCT journey to be. The initial diagnosis and ALL treatments are the first 1/3rd, the SCT is the middle 1/3rd and the post SCT recover the final 1/3rd.

So this is not a sprint and will take time. For some of us the post treatment recovery was a few months, for others a few years. It just depends on how hard his body has been hit and how fit he was going into SCT.

Could the Mucositis been avoided?…….. most likely not as the Chemo used along with the Radiotherapy (where used) is a big hit on the body and the vulnerable areas like the mouth and throat are wide open for attack and even all the precautions taken may not work.

I have had two Allo SCTs with cells from my brother and I totally get the journey you are all on.

You may want to follow this link to our Stem Cell Transplant Forum  where you will be able to connect with people who understand the journey you and your son is on. You can ask the folks questions about post treatment care, what to expect and how to help him during this time.

Follow the link above and join the group. Hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

We also have this thread - Life after a SCT - A Survivor's Guide where we have recoded our post SCT stories - have a look as you may get a better understanding of the challenges still to be faced.

You may want to post some information in your profile as this really helps others when answering. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine profile by clicking on my username

Always around to hep out.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Vanners
Posted by

Thank you for your reply to my message, very much appreciate your kind response.

Regards, Mark

Mark
Vanners
Posted by

Would oral cryotherapy have reduced the effects of the mucositis?

As far as I’m aware this was not offered or discussed prior to treatment.

regards, Mark

Mark
Vanners
Posted by

Many thanks for your reply.

Regards Mark

Mark
Caroline- Macmillan

Hi Mark, 

Apologies for the delay in replying. Jane our transplant nurse might be better answering this question. In my trust we are no longer allowed to use ice for patient consumption due to an outbreak of waterborne infections. We used ice before this though.

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.  

Thehighlander
Posted by

Mark,

You can find Jane on this LINK

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Caroline- Macmillan

thanks Highlander,

having a few technical issues this morning and cant insert links.

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.