Treatment for: carcinomatous meningitis

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Treatment for: carcinomatous meningitis

by Georgia_E on Sun Jan 27, 2002 12:00 AM

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My sister-in-law was recently diagnosed with this cancer in her spinal fluid and the meningeal lining of the brain. Family (ALL of us) are looking for ANY and all information that we get regarding treatment options, prognosis, any survivors or at least how long? What can we expect, what can she expect? PLEASE help. The primary cancer was of the right breast. Intrathecal Chemotherapy (Ommaya Reservoir) was attempted but stopped after 4 treatments due to toxic reaction to Methotrexate. Georgia

Leptomeningeal Carcinomatosis (carcinomatous Meningitis)

by Gdpawel on Tue Aug 10, 2004 12:00 AM

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The most common cancers to involve the leptomeninges are breast cancer, lung cancer and melanomas, and now, because of dose-intense combination chemotherapies, even ovarian cancer is more common.

Unfortunately, cancer cells are too small to find on any scans unless they have grown into a lump. There can still be cancer cells in the body even though scans may have indicated that all the cancer had gone. Carcinomatous Meningitis (Leptomeningeal Carcinomatous) is caused by cancer cells getting into the thin sheets of body tissue that surround and protect the brain and spine. These sheets are called the meninges. Meningitis means inflammation of the meninges and Carcinomatous just means acting like a cancer. Most people are familiar with meningitis caused by an infection. But with Carcinomatous Meningitis, it is the cancer cells in the meninges that cause the inflammation, not an outside infection.

Cancer cells do not always develop into an active secondary tumor when they have spread to a new site. Sometimes they stay inactive for many years. Even after a cancer appears to have been successfully treated, some cancer cells may still be elsewhere in the body. No one knows why some cancer cells stay inactive or what triggers them to form a secondary cancer.

Tumor cells reach the Meninges (or leptominges) by hematogenous (blood) spread or by direct extension from pre-existing lesions and are then disseminated throughout the neuroaxis by the flow of the cerebrospinal fluid. Patients present with signs and symptoms from injury to nerves that traverse the subarachnoid space, direct tumor invasion into the brain or spinal cord, alterations in blood supply to the nervous system, obstruction of normal cerebrospinal fluid (CSF) flow pathways or general interference with brain function.

Diagnosis is most commonly made by lumbar puncture, although the CSF cytology is persistently negative in about 10% of patients with leptomeningeal carcinomatosis. Radiology studies may reveal subarachnoid masses, diffuse contrast enhancement of the meninges or hydrocephalus without a mass lesion.

Doctors estimate that about 5 out of every 100 patients who have cancer develop carcinomatous meningitis. It is most common in breast cancer, but it can occur with any type of cancer. The cancer cells in the meninges can cause a range of symptoms, including confusion, headaches and weakness.

This condition is very difficult to treat. The main aim is to help control symptoms and not cure the disease. Chemotherapy injected into the spinal fluid (via Ommya Reservoir in the brain) or radiotherapy to the brain are both treatments for Carcinomatous meningitis. Some patients respond to these treatments, but the prognosis is generally poor. There are no set guidelines for treating this condition as oncologists don't really know which treatments work best.

Without treatment, the median survival of patients is 4 - 6 weeks and death occurs from progressive neurologic dysfunction. Radiation therapy to symptomatic sites and disease visible on neuroimaging studies and intrathecal chemotherapy increases the median survival to 3 - 6 months. Major favorable prognostic factors include excellent performance status, absence of serious fixed neurologic deficits, normal CSF flow scans and absent or responsive systemic tumor.

Oncologists have been looking at using different combinations of chemotherapy drugs to treat Carcinomatous Meningitis secondary to the primary cancer. They found that giving both chemotherapy injected into the bloodstream and chemotherapy given directly into the spinal fluid improved the outlook for some people.

However, aggressive therapy for this disorder is often accompanied by necrotizing leukoencephalopathy which becomes symptomatic months after treatment with radiation and intrathecal methotrexate. Current available therapies are toxic and provide limited benefits.

Carcinoma Meningitis??

by Mvspek on Fri Jan 21, 2005 12:00 AM

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I'm new to the site and read your message from 2002 about your sister. How is she doing or is she still here? My sister, 57 has the same thing. Secondary metastasis of breast cancer in her CSF, ommaya resevoir, chemo and radiation done, due to inflamation in spine, cannot walk. She's given less than 2 yrs to live. Please reply to me, if you're still online with your email. I'm desperate to hear about your sister and how she's doing with the treatments. Thank you Marsha

Carcinoma Meningitis

by Krispi on Fri Feb 04, 2005 12:00 AM

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Hi, I'm new to the site too. My mother has had cancer since 1998, three different times. This last time it metastasized (we found out last June). Yesterday we received the news of her having the same thing your sister has, and they only gave her 6 months, although I have read things that say 3 - 6 months with treatment. I pray that your sister gets a longer period of time with you and hope that my mother makes it as well, as I'm due with our first child in July. So far she is experiencing pain below the neck as she has been for the last year, but no pain in her head. Let me know how your sister is doing. I don't know anyone to talk to about this. Kristi

Your Mother's Condition

by Mvspek on Fri Feb 04, 2005 12:00 AM

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Hi Kristi, Thank you for your reponse. I'd love to email you and talk to you more. Don't know how they work the reply to messages, to get a hold of each other. I'm so sorry to hear about your mother. We'll pray she makes it to see your new baby. How is she doing otherwise? Please let me know how you are doing as well. Marsha V.

Please Share Your Experiences....

by Trying_to_Stay_Hopeful on Fri Apr 15, 2005 12:00 AM

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Hello, I know your story well, my mother has also had cancer 3 times which most recently has developed into leptomeningeal disease (carcinoma meningitis). She has been very dizzy, nauseated, vomitting and has difficulty walking. We will be meeting with new doctors April 20, 2005 to discuss Intrathecreal Chemotherapy. Can anyone share their stories of how this treatment worked for them..... Or stories of how this disease progresses in the person suffering from it.... I`d like to have more information so that our family knows what to expect and what it is we are dealing with. Thank you.

Stay Hopefull

by Mvspek on Sat Apr 16, 2005 12:00 AM

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I know it's really hard not knowing whether this treatment will help your mother But all I can say, is ask the Doctors to be honest with you, ask them to give you the facts, which will help you gather information, to help your whole family cope with your mom and her treatments. Spend as much time with her and love her, tell her, so you have no regrets. and pray for her.

Carcinomatous Meningitis

by Kegl72 on Mon May 09, 2005 12:00 AM

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Kristi - I read your email and couldn't believe my eyes. My mother also has cancer and my husband and I are expecting our first child in July as well. Such a rollercoaster we are all experiencing. My mom was diagnosed with lung cancer with mets to the brain in mid March. She lost her vision...but during whole brain radiation it started to come back. She came home for a month and was vastly improved physically as well. We made it through chemo round 1 with no problems. Then she developed blood clots. During her hospital stay she was given percocet, morphine and fentanal - simultaneously. Needless to say she was looped. We brought her home and her metal state rapidly declined. She stopped sleeping and was hallucinating severely - seeing people, things, having conversations with no one etc. Her CAT scan showed shrinkage to brain mets and they thought originally it was drug induced. Tomorrow she has the spinal tap to find out of it is Carcinomatous meningitis. My question to you all - did your relatives experience such dilusions? She hasn't a fever, etc. Thanks for your help all - and my heart goes out to you Kristi!

Carcinomatous Meningitis

by Krispi on Mon May 09, 2005 12:00 AM

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Hi Kelly, Yes, what a difficult time this must be for you. When are you due? We're having a boy hopefully before July 16th. :) My mom passed away on March 11th, but it was due to her liver being unable to work. She never experienced any of the symptoms of Carcinomatous Meningitis. In fact, she was very alert until her last 24 hours. Sorry that I don't have more to help you, but I hope that things get better! I am amazed that she got her vision back - that is a terrific sign. Kristi


by Kegl72 on Tue May 10, 2005 12:00 AM

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Kristi - I am so, so sorry about your Mom. There are no words. Ironically the day your Mom passed was the same day my mother's cancer was discovered. I am due July 22...right after you. We are having a girl. Should be interesting. lol Thank you so much for responding, my thoughts and prayers go out to you. I wish you the very best, Kelly
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