leptomeningeal disease

[bhayer1]

My mother has been diagnosed with Leptomeningeal disease from a Lung cancer returning after 4 year of being cancer free. Does anyone have any advice or experience of this rare form of advanced cancer? She is on Tagrisso 80mg since last August however the oncologist has said that as soon as this stops working there will be no further treatment options as she is quite bedbound. When she was diagnosed last year she was in bad state - headaches, dizziness, confusion and tinnitus. The other hospital doctors wanted to call it a day and send her home but after begging the oncologist he allowed her the treatment with Tagrisso. Her symptoms are now starting to return so any advice would be great to try to keep her going as long as possible as she is quite strong in herself and doesn't want to give up.

Many Thanks

Bobby

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello bhayer1,

I am very sorry to hear that your mum has been diagnosed with Leptomeningeal disease, this is a condition often associated with advanced cancer. Treatments therapies can be limited and often what is offered will depend on your mums overall state of health, physicians will tend to treat any problematic symptoms as and when they arise.

I have added below some links to information from the cancer research website I thought they might be helpful to you

cancerresearchuk.org/about-...

cancerresearchuk.org/about-...

If there is anything you would like to discuss you can either email us at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[bhayer1 in reply to RoyCastleHelpline]

Thanks for your reply.

What options should we be trying to explore as the next line treatment if the Tagrisso becomes in effective. The Oncologist has said they could try Whole Brain Radiation but im very about the side effect of this modality.

Are there any natural or no allopathic options that have had any success?

Thanks again

Bobby

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to bhayer1]

Dear BobbyAny cancer treatments licensed for use have gone through very rigorous and sometimes lengthy clinical trials.

At present there is no known research on natural or homeopathic treatments that would benefit those with Leptomeningeal disease.

You may be interested in this article (2017) from the USA on research they are doing into Leptomeningeal disease: mdanderson.org/cancerwise/n...

The medical team would assess if your Mum is fit for any brain radiotherapy, they would take into account any side effects and quality of life with this, and weigh it against the aim of reducing the symptoms of cancer with possible extension of life.

This is our booklet on brain metastases where it provides information on the radiotherapy for the brain: roycastle.org/app/uploads/2...

If you would like to discuss anything else you can email us at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[bhayer1 in reply to RoyCastleHelpline]

Thanks for your message.

I tried to reach out to one of the specialist at MD Anderson - Dr Barbara - but i wasn't able to get a response. Is this something you could potentially help with?

Kind regards

Bobby

[RoyCastleHelpline Partner Ask the Nurse Roy Castle in reply to bhayer1]

Hi Bobby I will send you a private message.

The Roy Castle Lung Cancer Foundation