leptomeningeal carcinomatosis diagnosis - 1257963

dantay112
Posts:6

I am a 44 yo female with original diagnosis of bc. Most recent brain mri: several enhancing masses in left occipital lobe including dominant parenchymal lesion as well as adjacent more peripheral leasion appearing leptomeningeal in location. I need some help/suggestions for tx. I have two young girls that I need to continue to care for and am not ready to leave this world. I'm begging for your assistance in anyway with some suggestions. LP performed yesterday and spinal MRI completed today and will have those results tomorrow. This is such a scary diagnosis and I need some help!

Pamela Poulin
Maine

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Reply # - July 16, 2013, 04:24 PM

Dr West
Posts: 4735

Pamela,

I'm truly sorry to hear of your diagnosis and the complication of leptomeningeal carcinomatosis (LMC). As I mentioned in an e-mail to you, unfortunately I don't have any special treatment options not listed elsewhere here. None of the faculty has vast experience with managing many patients with LMC, and most of us have little or no experience in treating this in the context of breast cancer. It's important to note that there are real differences in this complication when it occurs from one disease vs. another. For instance, Tarceva (erlotinib) can be effective therapy (at least transiently) for LMC from lung cancer in someone with an EGFR mutation (Tarceva being an EGFR inhibitor), but not likely useful in people with breast cancer for LMC, in which chemotherapy in the cerebrospinal fluid (CSF) is commonly tried and sometimes of at least limited utility.

LMC is a very difficult complication for which our lack of good options has been very humbling. I wish I and the rest of the cancer care community had more effective therapies to offer.

Good luck.

-Dr. West

Reply # - July 16, 2013, 08:13 PM

belize2
Posts: 16

Check the clinicaltrials.gov website. There are clinical trials for LC and a couple are for breast cancer. You can read the eligibility criteria and ask your oncologist if you would qualify. Just beware because we had an oncologist tell my husband "no, you don't qualify" when in fact he did qualify as confirmed by the trial coordinator.

Reply # - July 17, 2013, 12:59 PM

lori2010
Posts: 5

I have been searching for anything about treatments for leptomeningeal carcinomatosis, as my mom has LM from lung cancer, and I have come across some BC patients with LM who are doing well on Xeloda. Try Inspire.com website (advanced breast cancer forum) if you haven't been there yet. All the best to you.

Reply # - July 18, 2013, 04:20 PM

lori2010
Posts: 5

Sorry if my post was confusing. I just wanted share with Dantay112 (who had Breast Cancer and now LMC) the information regarding Xeloda for BC LMC and possibly connect her with others going through the same thing. I did not intend to distract from the lung cancer posts in any way. Cancergrace is a wealth of information, and I am most grateful for so many invaluable articles and doctors' posts regarding lung cancer.

Reply # - July 18, 2013, 09:28 PM

Dr West
Posts: 4735

Perfectly OK, and we don't want to make it seem like GRACE is exclusively for any kind of cancer. We hope to continue to add more faculty so that we can provide a wealth of information about many cancer types. Lori, you don't need to worry that addressing an issue about breast cancer would minimize issues for lung cancer patients -- so thanks for offering whatever information you felt would be helpful.

-Dr. West

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