Leptomeningeal Disease

FormerMember over 5 years ago

5 replies
31 subscribers
2561 views

Hi,

My mum was diagnosed with Leptomeningeal Disease in July and given a matter of weeks to live. As other daughters probably do, I googled and read about this disease and could only find a 3 week to 3 month prognosis. I wanted to post here in case anyone else has been in my situation. My mum has declined offers of radiotherapy (she had some a year ago and hated it) but she is getting better. She is on Tamoxifen and it is making a difference. I am not qualified to go into the scientific details, I just wanted to give others some hope that this disease is not necessarily as devastating as the reading on it might make one think.

If you want to get in touch, please do. For the moment, Mum is home and has a good quality of life. I will post on here if that changes.

Please keep positive and take comfort from all the brave people who make up this online community. x

FormerMember over 5 years ago

Wow! Thank you for sharing your story. I obviously had to look up leptomeningial disease too. Goodness what bad luck for your mum and I can only begin to imagine how scary it must have been for you to read about it.

It’s great news that your mum is getting a response with tamoxifen and yes, it goes to show the truth in something we often repeat here: be very wary of Dr Google. So much of the info online is out of date when it comes to cancer prognosis.

i wish you all the best

FormerMember over 5 years ago

Hello,

I’m so glad your mom is doing good despite having leptomeningeal disease.
Can I ask what are her symptoms?
The thing is my dad was also diagnosed with leptomeningeal disease but he didn’t make it. His symptoms were bad and got worse very quickly. I just don’t understand

FormerMember over 5 years ago in reply to FormerMember

I am so sorry.

I am not qualified to properly answer and help you understand. All I can say is that I think leptomeningeal disease is associated with people who already have advanced stages of cancer. Perhaps another cancer played a part in your poor Dad's demise.

Also, as I understand it, LD is when cancer cells are in the liquid around the brain. This liquid is periodically cleaned/refreshed by our bodies and I am guessing that this is key to whether the cancer cells are allowed to build up and cause serious damage or not and this is different for everyone.

Either way, the prognosis of 3 weeks to 3 months seems to be consistent wherever I have read.

My mum has lasted 5 months but is fast deteriorating now. I think she might have been lucky to have lived longer than 3 months but she has spent most of the last 5 months in bed, so her quality of life is limited.

I am so sorry about your Dad. I'm afraid cancer is just different for everyone. I wish you lots of love and i hope you have happy memories. X

FormerMember over 5 years ago in reply to FormerMember

I see, so 5 months is sort of an extraordinary thing to happen rather than something common.
All I can say is spend time with your mom, talk to her, cherish every moment.
Thank you for your response too

FormerMember over 5 years ago in reply to FormerMember

Just wanted to thank you for getting back to me, for that kind advice and to say again, how sorry I am that your Dad died so suddenly. I hope 2020 brings some happy times soon. This forum makes me sob but brings me comfort too because all the posts are about supporting each other. xx