A support group for anyone affected by leukaemia to come together, share experiences, and ask questions.

Anybody had Shingles whilst having AML

Posted by

I just wondered if anybody had shingles whilst they had AML.
My mum is currently on Hydroxycarbamide chemo tablets to try and control her blasts in her blood, but because she doesn't have any neutraphils, she keeps getting infections.
She has Shingles which have scabbed over, but they are in a very personnal place and are driving mum mad with the pain.
People say that if she is in pain with them that is because they are healing up. But in the meantime, I a'm wondering how you all coped with them.
She has been given some pain relief patches for her arm to try and control the pain, but only got them late last night.
Then the doctor prescribed some cream, but mum almsot leapt through the roof in pain with that.
So it had to be washed off.
It's making mum very depressed as she doesn't feel like eating and cries a lot because she is so down.

She is on Aciclovir for her shingles and at first she wasn't in pain for them at all, they just itched. But now they have scabbed over, they are so painful.

She also has a small blister on the end of her tongue which has white powdery stuff on it, so it's like a fungal infection.
Doctors say that is because of the Leukaemia. She also has a larger one on the roof of her mouth also covered in the white powder, so it's difficult eating.
We give her Bonjella, mouth washes, salt water mouth washes, etc etc.
Also try to encourage her to eat Ice Cream and things that are cold.
But nothing seems to be helping.

Hope things get better for her.

Binnie x
Posted by
Your poor mum, it sounds like shes really going through it poor thing, am sending her big hugs!

I haven't got AML but I have got HL and have had shingles, not nice. I ended up on amitriptyline for the pain which is an anti-depressant, not really what I wanted to do but all pain had completely gone (and didn't come back) after two weeks. I gave in with the itching of the rash and scratched and now have a couple of scars but the satisfaction of the scratching at the time was worth it.

Its tough to watch I can imagine, but she will get through this, maybe a councillor could help?

Wishing her all the best, Take care,
Posted by
Thank you Ruth,
It's the pain which mum can't cope with, not too sure if they still itch or not though.
It must be even worse having them where it's very private, I feel so sorry for her.

Mum has no Immune System/Neutraphils at all with being on Chemo tablets, so everything is taking ages to heal up.
I know they say they are getting better when they are scabbing over, but how do you control the pain.
Hopefully these patches mum has got will help.

Binnie xx
Posted by
I didn't have shingles, butideveloped sweets syndrome with AML, the rash was extremely painful. My sypathies go to your mum and i hope she gets some proper pain relief soon.I was treated with steroids and that helped a bit....julie
Posted by
Hi Julie

Even though mums shingles have scabbed over, she is on Fentanyl patches for pain relief and they help her a lot.
To be honest, she hasn't mentioned them for ages, so not sure how they are nowadays. I will be asking her when I go and see her tonight.
She is in bed most of the time, as she isn't hardly eating and is very weak.

Hope you are ok Julie