Leptomeningeal disease

Hi ladies, and wonder if you can help.

I was first diagnosed with BC in 2003 and have had a number of reocurrences since - currently at stage 4in breast, auxillar, lung and bones.

MRI scan yesterday revealed Leptomeningeal disease which means my current herceptin based treatment is cancelled and I will be hearing from my Prof next week with alternative treatment.

I am really struggling to find any information about this condition other than it sounds really serious…and scary. Does anyone have any experience of this, of the possibe treeatments and side effects, and on the implications for life expectancy.

Not the Christmas pressie I was hoping for!!!

Hi Valleygirl, I’m sorry to hear your news. A friend of mine had leptomeningeal mets, she had other complications as well and was going to have some chemo via lumber puncture. Unfortunately the other complications, (not the L mets) meant she never received treatment but at that time while looking for some encouraging info for her on the net I found some info on a patient who was doing well 2 years after treatment. I can’t remember where I read this but it was definitely leptomeningeal bc mets.
Would tykerb, lapatinib, be an option for you? I thought it crossed blood, brain barrier…?
Good Luck I hope your Prof comes up with a good plan next week…xxx

Thanks Belinda, and sorry to hear about your friend. Tykerb didn’t work for me, along with Herceptin et al so wondering what magic formula they will come up with next!

Hi Valleygirl

What symptons, if any did you have re Leptomeningeal disease ? Hope the Prof finds a good treatment.

Warmest wishes