leptomeningeal disease

Hi Butternut1

Thanks for getting in touch with us and welcome to the online community. My name’s Simon and I’m one of the Cancer Information Nurses on the Macmillan Support Line.

I’m sorry to hear that your mum has been diagnosed with leptomeningeal disease (sometimes called leptomeningeal metastases). Whilst it is good to hear that your mum doesn’t have any symptoms, deterioration can be quite fast due to the nature of the disease.

The most common problems are headaches, nausea, vomiting, double vision, weakness, loss of urine control, and difficulty walking, but leptomeningeal disease can cause almost any neurological problem, depending on where the cancer cells land.

Questions to ask your mum’s treatment team could include what benefits there are to any treatment versus the potential side effects that may occur. Asking what care and support would be available to your mum at home if she doesn’t have chemotherapy may also help in making decisions about treatment. Support for your mum should include referral to a Palliative Care team who can help manage any pain or symptoms she may experience.

I hope this information is of some help.

Best wishes

Simon Morgan-Jones:  Cancer Information Nurse Specialist

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 send us an email.

Ref/SMJ/ LE

Hi Simon - thanks for your message, It’s so hard seeing her carrying on unaware that she’s only got weeks left. We’ve got a meeting with hospice people next week.