Leptomeningeal disease

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Leptomeningeal disease

Hi there,

Need help and advice:

So...2016 my mother was diagnosed with primary Bowel Cancer that was resected with no recurrence to date, then  in 2017 she had a new primary Lung cancer which was resected with adjuvant chemotherapy with again no recurrence as per her last CT scan . At the same time in 2017 she was diagnosed with a lung carcinoid in her other lung which again is stable.

However over the last three months she had deteriorated rapidly. Severe headaches, dizziness, severe tinnitus, vision loss and no hunger - she has dropped around 9kg in weight. The hospital doctors have confirmed its Lepto meningeal disease from mets that are in the lining of the brain but whilst the mri showed Dural thickening at the back of the head and right side, the lumbar puncture confirm it is from the Lung cancer coming which is EGFR L585 mutation..

She has started tagrisso at 80mg - double dose is not available in the UK. it has been 4 week and not much side effects so cant say its working. She has been taking 8mg Dexamthasone twice a day but reduced this in the last week to 4mg. This has resulted in adsence seizures returining and she is now quite anemic too.

We dont want her Tagrisso treatment to stop as the other option is they send give her no treatment and allow nature to take over - but she and our whole family are not ready to give up yet. Oncoligist feel that any further treament/chemo would be too toxic for her. Awaiting MRi to confirm if the treatment is working.

What are the options with LMD - are there any other treatment modalitys for my mother in the UK?

Amy advice is appreciated.




Jim C Forum Mod...
Jim C Forum Moderator's picture
Leptomeningeal disease

Hi Bobby,

Welcome to GRACE.  I am so sorry to hear of your mother's diagnosis of leptomeningeal disease, as I have first-hand experience with just how heartbreaking the symptoms can be. I have no insight into what options may be available in the UK, but you might want to search clinicaltrials.gov to see if there are any current clinical trials available nearby.

Another option you may want to discuss with her doctor is pulsing the Tagrisso dose. In my wife's case, she took a quadruple dose of Tarceva every four days. It caused no problems with insurance, as she was taking the same total amount each month. The theory is that taking a larger dose increases the concentration of the drug crossing the blood brain barrier, hopefully reaching a level which is effective. Some patients have received benefit from this approach. 

My thoughts are with you and your family at this difficult time. 

Jim C Forum Moderator