Has anyone here had experience with leptomeningeal carcinamatosis?

My thoughts and prayers are with you now as you care for your mother. Try to be strong for her and love her until she passes. This must be a very upsetting event and I encourage you to seek professional counseling to deal with your feelings. You must take care of your health first. Best wishes!

Nothing wrong with trying treatment if that is what you want! Intrathecal chemo may be pretty well tolerated, maybe better than what she's already been through. Radiation therapy might also be conisdered. A cure may well be impossible, but palliation for a time may be readily acheivable, I sure do not know enough about oncology to tell you more...but if it seems after a fair trial that she is in the 70-80% and not the 20-30% then absolutely call in hospice. Since the treatment is probalby not curative, they might even be willing to be involved if she chooses to continue it as well, but philosophies rules and regs vary on that.

Excerpt from Medscape:

The median survival is 7 months for patients with LC from breast cancers, 4 months for patients with LC from small-cell lung carcinomas, and 3.6 months for patients with LC from melanomas.

•Without therapy, most patients survive 4-6 weeks, with death occurring because of progressive neurologic dysfunction.
•With therapy, most patients die from the systemic complications of their cancer rather than the neurologic complications of LC.
•Fixed focal neurologic deficits (eg, cranial-nerve palsies) generally do not improve, but encephalopathies can improve dramatically with treatment.

Yes I have used Hospice too. They are wonderful. They do not prolong life. They make the patient feel comfortable. And with what she has, I would not put her through chemo. But that is, of course, your choice. Have you asked her what she wants. Seems like now is the time to be honest with her. God Bless you all.

I have no experience with this type of cancer, but I can vouch for Hospice. They will guide you and give you more definitive answers that doctors are reluctant to give. They will provide the medication, equipment and emotional support for your mom and family members. They truely are God-sent. I lost both my brother and Dad to cancer and I can't imagine going through that without Hospice.

Hospice can take the weight of the world off your shoulders for both of you. Call them for a consultation. I've worked with them on several occasions and they are a God send. Please consider this. Pamstegman is right on with this. Your mom is so young. I know this is hard. God bless you. You can do this.

She recently just had a reservoir put in her head to get chemo directly to the spine and we're working on getting back to her chemo for her stomach/rest of the body as well. We're hoping she's strong enough to handle both chemos and she plateaus and doesn't get worse. Her doctor only gave this a 20-30% of working though. She and I trying our best to remain positive, but there's so much against us that it feels almost impossible.

You call in Hospice. Now. You get the right medications to keep her comfortable and keep the symptoms at bay. All brain cancer patients are different, there is no set pattern. It all depends on what area of the brain is being affected. Sending you hugs and prayers.