Leptomeningial Carcinomatosis - 1267147

Has pulsed Tarceva been mentioned? This has been tried and is the treatment that Valerie Harper did when her lepto carcinoma was discovered. I can't comment on the lip intratecal liposomal cytarabine since I know nothing about it other than what I've read. Take care, Judy

Hi Ben,

I'm so sorry your sister has been dx with leptomeningial carcinomatosis. Dr. West responded to a similar question last month stating, "Unfortunately, there are no particularly effective therapies for leptomeningeal carcinomatosis in the setting of lung cancer, and it remains a very difficult complication to manage. Though some patients have done well with pulsed Tarceva (erlotinib), that may really be applicable mostly or entirely in the minority of lung cancer patients with an EGFR mutation." http://cancergrace.org/topic/metastatic-brain-cancer-and-leptomeningeal…

In a post written 2010 by Dr. West he describes the use tarceva in EGFR mutants but begins with a more general discription, "One central reason that leptomeningeal carcinomatosis is also especially dreaded because we really tend to do so poorly in treating it. Craniospinal radiation therapy (RT) has been tried, and there is the option of giving chemotherapy directly into the CSF through a series of lumbar puncture (spinal tap) procedures or through an Ommaya reservoir that is implanted into the skull to deliver chemo right into the fluid collections inside the center of the brain. Unfortunately, none of these options has been effective (particularly in lung cancer, though results in breast cancer treatment have been more favorable), and most thoracic oncology experts and general oncologists have favored a focus on comfort care as the primary intervention." http://cancergrace.org/lung/2010/01/31/an-effective-treatment-for-some-…

There's more talk lately about lepto and its treatment possibly due to targeted therapies and people living longer with lung cancer though there's still a need for a good treatment. Here are some recent posts, http://cancergrace.org/search-results?q=Treating%20Leptomeningeal%20Car…

It's very good hearing from you and I'm so glad you'll be with your sister soon,

Ben,

I'm so sorry to hear she's developed this complication. .I'm afraid that I think the value of pulsed Tarceva for leptomeningeal carcinomatosis is likely to be primarily, if not exclusively, in patients with an EGFR mutation, and especially unlikely in patients with a KRAS mutation.

I don't have an experience with liposomal cytarabine in lung cancer patients with meningeal carcinomatosis. There may be an improvement in outcomes with it compared with no treatment, as I've seen a stray reference that suggests that treatment is more effective than previously thought (a rather low bar), but I don't think it's likely to give prolonged periods of especially good time. I must confess that there's no groundswell of enthusiasm over its value as a means of profoundly altering the trajectory of the disease. I don't recommend treatment with this approach for my own patients with leptomeningeal carcinomatosis.

Good luck.

-Dr. West

Ben,

I am sorry to hear of your sister's LMC diagnosis. I would just ask - how was that diagnosis made? Were cancer cells found in the LMC after a lumbar puncture, or is the diagnosis based solely on scan findings? Is she displaying typical LMC symptoms?

I ask these questions because it is not unusual to see LMC as an overcall on scan findings, with no symptoms ever developing.

Keeping both of you in my thoughts,

JimC
Forum moderator

We often don't do lumbar punctures in this setting, for several reasons. First, imaging findings with classic clinical picture may leave us in a situation in which a potentially uncomfortable procedure only increases the level of certainty from 98 to 100%. Second, lumbar punctures often come out as false negatives, even when someone actually has LMC. Third, our general rule in medicine is to only do tests that will change management. If there's no good therapy to offer if you confirm the result, it's hard to identify the value of confirming the diagnosis just for the sake of confirming it.

-Dr. West