Leptomeningeal disease

[Sunnydrinking]

Hi

A beautiful young mummy called Emma, aged 40 who I’m in contact with here in the UK with MBC has now also been diagnosed with leptomeningeal disease. I understand this is a spread of the cancer around the tissue in the brain.

Does anyone have experience or advice on this that I can pass on to Emma please. Emma is desperate to spend as long as possible with her young son.

Jo xx

[Winner123]

We are waiting for the results of a 3T MRI scan to see if my wife has leptomeningeal disease. She is 39 and we have two children, we are hoping it's not present. I've been reading about it and there are a number of things; Diagnosis is difficult, make sure, they recommend if suspect on MRI do more than one lumbar puncture (spinal tap) to look for cancer cells.

If sure, there are a number of chemo drugs that pass the Blood brain barrier and these should be considered. There is also a surgical "Ommaya" that can be implanted and deliver chemo drugs directly to the CNS at low doses with relatively no side effects, this could prolong survival and read very well.

I'm really sorry your friend has this complication, it's a horrible disease again and again. I hope the above may have helped?

Wish us luck for our diagnosis next week.

Xxx ❤️

[Sunnydrinking in reply to Winner123]

Thanks for your helpful response.

Very best wishes & lots of luck for next week.

Jo xx

[Hidden]

That’s a tough blow for your friend Emma ~ she could try Brainstrust which is a charity specifically for people with brain tumours they might be able to provide her some support or help.

I also know recently a couple of others with MBC who have had a consult with Patricia Peat and they have been reassured and impressed by her advice.

Hope that may help your friend

[Sunnydrinking]

Many thanks for all your helpful advice. I can see that this is a difficult complication to treat. I have passed on some advice but agree it’s probably best for her medical team to liaise on best next steps.

Very best wishes to you all.

Jo xx

[Andersl]

I would imagine the options all involve radiotherapy/radiosurgery.

I had disease on the lining of my brain 2 years ago. It was slightly too big for stereotactic radiotherapy. I had brain sparing radiotherapy (memory and cognitive function spared).

It hasnt come back in that area but this year 4 spots appeared in the cerebellum. I had Gamma radio surgery for that.

My advice would be ask about eligibility for Gamma. Though whatever route is taken, dont delay.

Hope that helps x