Cancer in spinal fluid

Does anyone have any experience with lung cancer cells that have spread to the spinal fluid? The doctors are saying there is no cure, and there aren't any options other than chemo once a week administered by a lumbar puncture. My sister just got the news today after battling Stage 4 for almost 6 years.....thanks for any info.

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My husband's NSCLC, Stage IV spread to his spinal fluid. His oncologist told us that he had two options: 1.) inject chemotherapy directly into his brain so that it would circulate in/around/through his spinal fluid and 2.) radiation to his spine.


Dr. said that she had not seen many successes with option #1 and because spinal fluid circulates all the time, it is very difficult to radiate all of the cancer cells.

TIME IS OF THE ESSENCE HERE. The sooner your sister receives treatment, the greater her chance of success is.

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Thank you for the information. Her onc said the same thing....basically the first 4 treatments will tell if the chemo is working or not. And it can't eradicate all the cells b/c they are in the fluid, always moving...is your husband doing either of the procedures?

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Leptomeningeal Carcinomatous (Carcinomatous Meningitis)

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. Leptomeningeal metastasis (Lepteomeningeal Carcinomatous or Carcinomatous Meningitis) is a condition 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. Carcinomatous just means acting like a cancer. Most people are familiar with the type of 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 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.

Secondary cancers from a primary cancer can develop in different parts of the body, including the brain or spine. 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. So, 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.

Diagnosis is most commonly made by lumbar puncture, to look for malignant cells or elevated protein levels in the spinal fluid, although the CSF cytology is persistently negative in about 10% of patients with leptomeningeal carcinomatosis. A MRI of the brain and spine to look for enhancement of meningeal tissue. Radiology studies may reveal subarachnoid masses, diffuse contrast enhancement of the meninges or hydrocephalus without a mass lesion. The cancer cells in the meninges can cause a range of symptoms, including confusion, headaches and weakness, also head pain, cranial nerve involvement, hearing problems and back pain.

The 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. 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 Leptomenigeal Carcinomatous secondary to the primary cancer. They found that giving both chemotherapy injected into the bloodstream and chemotherapy given directly into the spinal fluid may improve the outlook for some people. However, current available therapies are toxic though, and provide limited benefits.

If an assay test could not be performed and the disease had to be treated empirically, one protocol could be giving intrathecal thiotepa plus systemic gemcitabine (the gemcitabine given prior to the thiotepa). Thiotepa may be safely given intrathecally. Gemcitabine can probably be given intrathecally (it is somewhat similar to cytarabine), but it is thought that no one has ever done a clinical trial to prove that this is feasible and safe. In principal, the best shot would be to give intrathecal gemcitabine + intrathecal thiotepa.

Another alternative to Methotrexate is Cytarabine (cytosine arabinoside) or Ara-C. It is an anti-metabolite (like Methotrexate) which stops cells making and repairing DNA. Cancer cells need to make and repair DNA in order to grow and multiply. Ara-C is a clear liquid that can be dripped into a vein (intravenous infusion), into the spinal fluid (intrathecally) or by an injection just under the skin (subcutaneously).

There have been clinical trials using Temodar (Temozolomide) instead of methotrexate, or Ara-C, or combination gemcitabine plus thiotepa
in treating patients with carcinomatous meningitis (leptomeningeal carcinomatous).

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=67814&version=pa tient

http://clinicaltrials.gov/ct/show/NCT00005812?order=11

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Did she survive? I think I know who this is.

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Miracle

Unfortunately, no. My wife had been involved in the issue of tumor cell dissemination after taxane-based (Taxol) chemotheapy, in such depth.

The lead author of one of the studies (Carcinomatous Meningitis: Taxane Induced?) that I list in my paper on Taxol, said taxane containing regimens didn't prolong survival over other more conventional drugs.

It may indeed give clinical reponse (tumor shrinkage), sometimes impressive, however, these are mostly short-lived and relapses after a response to taxanes are often dramatic.

http://pathology2.jhu.edu/ovca/story.cfm?PersonID=33

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I was dx. with Leptomeningeal metastasis in Sept. '09.
Had WBR and now on Tarceva. Thank You for sharing this information. It is very difficult to find any information or people who also have this disease.

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A doctor has written about his journey with lung cancer and mets to the brain.
This is the website.
http://www.adoctorsjourneywithcancer.net/

Click on the Health updates tab.

Good luck.

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There is an interesting professional education piece profiling a woman who received high-dose Tarceva to combat her leptomeningeal metastasis at http://researchtopractice.com/browse-tumor-types/lung-cancer/lcu-ne/3/1 (click on the interviews with Dr. Socinski).
You have to create a profile to listen to this, and it's rather long, but it does talk about how the decision was made to give this particular treatment. Obviously, if there was no prior response to Tarceva, one would not likely benefit from this treatment...

Wishing you all the best,
Regina Vidaver, Ph.D.
Executive Director
National Lung Cancer Partnership

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Dr. Vidaver's response alludes to something my onc told me after Tarceva treatment.....it does cross the blood-brain barrier, so nothing has to be introduced by "injection".

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CTML

I wish they had Tarceva (or any similar drugs) back when my wife was being treated for it (1999).

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Thank You for the good wishes.
I wish they had Tarceva then too. I'm hoping that things remain promising.
After reading your post, I feel a little less alone in this non-familiar arena.
What small amount of information I have been able to find is not emotionally helpful, but I would like to continue to learn more and talk to others who are dealing with this also.

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Any evidence that tarceva works on leptomeningeal mets?

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Carcinomatous meningitis (leptomeningeal metastasis) is a condition resulting in widespread dissemination of carcinoma in the meninges, particularly associated with small cell carcinoma of the lung, adenocarcinoma of the lung, and carcinoma of the breast. A central nervous system (CNS) disease like carcinomatous meningitis is particularly tough because of the blood-brain barrier.

The idea that systemic therapies can be effective has been looked upon for a number of years now, with agents like Temodar and EGFR inhibitors against brain metastases. There have been clinical observations of frequent brain metastasis responses with systemic chemotherapy.

There had been some successful clinical trials using the small molecule agent called Temodar (temozolomide) with leptomeningeal metastases from a solid tumor. A small molecule drug may be able to penetrate the blood-brain barrier. Small molecule intervention can be beneficial by dissolving through the capillary cell membranes and absorbed into the brain.

What may be another alternative is high doses of two small molecule EGFR pathway drugs, Tarceva (erlotnib) and Iressa (gefitinib), given together. It might cross the blood-brain barrier and some patients may get a long-lived remission with these drugs. High-dose tamoxifen could then be given continuously as a potentiator and an anti-angiogenic effect. These later suggestions come from cell function analysis.

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Lets hope so..
I saw Dr. J.Stevenson at the Univ. of Penn. for 2nd opinion at the suggestion of my oncologist. They both agreed that this would be the best option since it crosses the blood/brain barrier. I have read several articles stating that it is being used to treat Leptomenigeal Mets.

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CTML

Dr. James Stevenson is the medical oncologist who treated a Dr. Mark Fisher, a Philadelphia pharmaceutical consultant, back in 2003 with assay-directed therapy for a stage IV NSCLC with a solitary brain met. Dr. Fisher posted his experience on the American Cancer Society discussion board. As a result of the pre-screening, he commenced a regimen of gemzar, carboplatin, navelbine, high-dose tamoxifen and iressa. Not only did he go into systemic remission, the solitary brain met disappeared (no GammaKnife was needed). Without the screen, Dr. Fisher firmly believed he would have been placed on "standard" therapy which would not have been nearly as effective, and according to Dr. Stevenson, certainly would not have ever been treated with the combination that had shown activity in the screen. Dr. Fisher knows even experienced oncologists have only a rudimentary understanding of the assays, if they even happen to know of their existence.

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I have evidence.

My father was a NSCLC stage IV patient with three brain mets and leptomeningeal mets. He was taking Tarceva and was responding well to it. Unfortunately, he had others complications that forced him to stop taking it (we found out that his marrow was shutting down and he was having some hepatic problems, not related to the drug) and when he stopped it, we could notice a dramatic difference in his overall state. He wasn't able to go back to it because he died of a lung emboli cause by a trombosis in his legs (you can't have blood thinners when you have brain mets) so we weren't able to see it working again.

I know it's very hard to find info on leptomeningeal mets, and when we do, the info seems to be incomplete. The oncologist told me that new studies are been developed to evaluate the action of tarceva on this kind of cancer. It seems that, since the drugs acts on the protein receptors of the cancer cells (making them unable to grow), instead of being a drug per se, it ends up being able to cross the barrier in the meninges and work.

He also told me that Tarceva cannot be administered together with radiation. It created dementia for a period of time. The ideal would be to complete the radiation therapy and start the Tarceva afterwards.

I wish you the best of luck. Let's hope we're getting closer to the missing key in the fight!

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I have evidence.

My father was a NSCLC stage IV patient with three brain mets and leptomeningeal mets. He was taking Tarceva and was responding well to it. Unfortunately, he had others complications that forced him to stop taking it (we found out that his marrow was shutting down and he was having some hepatic problems, not related to the drug) and when he stopped it, we could notice a dramatic difference in his overall state. He wasn't able to go back to it because he died of a lung emboli cause by a trombosis in his legs (you can't have blood thinners when you have brain mets) so we weren't able to see it working again.

I know it's very hard to find info on leptomeningeal mets, and when we do, the info seems to be incomplete. The oncologist told me that new studies are been developed to evaluate the action of tarceva on this kind of cancer. It seems that, since the drugs acts on the protein receptors of the cancer cells (making them unable to grow), instead of being a drug per se, it ends up being able to cross the barrier in the meninges and work.

He also told me that Tarceva cannot be administered together with radiation. It created dementia for a period of time. The ideal would be to complete the radiation therapy and start the Tarceva afterwards.

I wish you the best of luck. Let's hope we're getting closer to the missing key in the fight!

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I have evidence.

My father was a NSCLC stage IV patient with three brain mets and leptomeningeal mets. He was taking Tarceva and was responding well to it. Unfortunately, he had others complications that forced him to stop taking it (we found out that his marrow was shutting down and he was having some hepatic problems, not related to the drug) and when he stopped it, we could notice a dramatic difference in his overall state. He wasn't able to go back to it because he died of a lung emboli cause by a trombosis in his legs (you can't have blood thinners when you have brain mets) so we weren't able to see it working again.

I know it's very hard to find info on leptomeningeal mets, and when we do, the info seems to be incomplete. The oncologist told me that new studies are been developed to evaluate the action of tarceva on this kind of cancer. It seems that, since the drugs acts on the protein receptors of the cancer cells (making them unable to grow), instead of being a drug per se, it ends up being able to cross the barrier in the meninges and work.

He also told me that Tarceva cannot be administered together with radiation. It created dementia for a period of time. The ideal would be to complete the radiation therapy and start the Tarceva afterwards.

I wish you the best of luck. Let's hope we're getting closer to the missing key in the fight!

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Mom started the Tarceva and celebrex on 1/8/10. I don't know how long it will take to see if it works. She is very weak and I hope we have time for it to work. I really appreciate all of the replies. It it good to talk to others that have delt with this devasting disease. Thanks for all for your prayers and encouragement.

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