After effects of chemo 6 years on from treatment for AML

My husband had Acute myeloid leukaemia (AML) and TB 6 years ago.
A double whammy, but he made it !
He now has quite serious problems with neuropathy in his feet ( swellling and pain) as well as , more recently , sciatica / nerve pain in his right leg.
A friend who is a surgeon has mentioned neuro- toxicity as a result of either / both the chemo and TB drugs. We’re trying to get a referral to a neurologist.
Does anyone have experience of this?
The care in hospital was wonderful , but as soon as he was discharged there was nothing , apart from a regular blood test taken at our dysfunctional local surgery.

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Hi @claresutherland a great big welcome to our forum.
I hope someone will be able to share their experiences for you.
Perhaps you are both doing all you can with getting a referral to a neurologist in the first
instance.
When I was first diagnosed I was told to take responsibility for my condition and I did not know what was meant, but now I take responsibility to tell medical people of my whole medical history because I find they often tend to look at their own specialism and not consider my whole medical history.
You then have the option of asking for a referral to a haematologist.
Yes, I think it brought up in me all sorts of thoughts and emotions when I was discharged back to my GP for monitoring. I felt angry, bereft, isolated, abandoned etc,
Look after yourselves and please do keep posting.

Sadly certain chemotherapy does seem to have this side effect.I was treated with a substance called Brentuximab about a year ago.It is an anti CD30 agent and seems to be used mainly to treat T Cell Lymphoma with CD30, the one I have, and Hodgkin’s Lymphoma and it has caused numbness in my finger tips and the sensation hasn’t returned.I don’t know about my toes as they are less tactile than the fingers so it’s harder to tell.A doctor told me that the finger sensation might be restored as nerves grow back very slowly.Other chemotherapy and immunotherapy drugs like Methotrexate and Interferon Alpha didn’t have this effect.The nerve damage from the Brentuximab wasn’t really even a tradeoff as it didn’t work and I still ended up having to have a Stem Cell Transplant.

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