Topic: Leptomeningeal Metastases or Carcinomatous meningitis in Brain

May 19, 2014 04:13PM Janlee5802 wrote:

 Don't know how to start out but here it goes...I had my third intrathecal on Wednesday, May 14th.  I'm also on xeloda.  I developed the hand foot syndrome and by Friday I had abdominal cramping and diarrhea.  Still suffering from the xeloda side effects.  I can't eat or drink very much.  When I change positions, I have whooshing and sometimes a headache.  I have to grab a wall or counter to stabilize myself until the episode passes.  Will this pass?  My onc had me stop the xeloda until I see her on the 28th and she will determine what my new dosage will be.  Do you think this is primarily the xeloda?  I'm scared and worried that the lepto is taking over.  What have your experiences been?

May 22, 2014 03:10PM amlg1 wrote:

Janlee Feeling lightheaded could be fluid on brain,thats what happed to me,I would feel like I was going to black out.Finally they put a shunt in and I have been fine since.Of course everyone is different.Feel Better.

Sep 29, 2015 05:04PM Jessica_07 wrote:

Hello everyone,

I have been reading all these comments and I am shocked how great everyone is with helping others during this difficult time.

My husband was diagnosed with lymphoma meningitis in April, after 4 rounds of high dose chemo and an autologous stem cell transplant later, we were just told there is minimal enhancement on his MRI and he is now doing radiation.

He was having terrible headaches and vomiting for 2 weeks straight, but after one round of radiation he no longer has those sympytoms. I am nervous that its still cancer. Anyone with any similarities?

Nov 26, 2015 11:45PM - edited Nov 26, 2015 11:52PM by Priyank123

Hi guys,

My mom has been recently diagnosed with LeptoMeningeal Metastases in the brain with communicating hydrocephalus. She had been diagnosed with breast cancer (ER+/PR+, HER2-) four and half years back. She had an NED status until September when this disease reoccurred at the worst possible place in her body. Surgery is not possible and her doctors think chemotherapy is a better option than WBRT(Radiation). She has floating cancer cells - no tumors. Her tumor markers (CA 15-3) were on border when the relapse of the disease was diagnosed. MRI scan and Lumbar puncture confirmed the presence of cancerous cells in the Leptomeninges. Symptoms like Veritgo/Migraine like headaches have been there since April this year. Body balancing issues have been there since one year. She also had cataract operation of both her eyes last year - dunno if the cataract had any connection with the disease?

She had been treated with Intrathecal Methotraxate (MTX) alone initially and later on Xeloda was added to her treatment. She has completed 12 doses of MTX and two cycles of Xeloda till now. Initially, MTX took a tool on her body. She had to be hospitalized after her first MTX dose because of seizure like instances and dehydration due frequent vomiting and loose motion. The seizure like events were very frightening for us to deal with. I had never seen my mom in such a state! Seizures and other side effects(vomiting and loose motion) of MTX were brought under control through medication. After her sixth dose of MTX, Xeloda (Two weeks On and One week Off) was added to her treatment. Xeloda has caused a lot of water retention in her body, minor hair loss, frequent urination, anxiety, sleepiness, few black patches on her skin and loads of cough. Other than that she hasn't had adverse side effects of Xeloda like the hand-foot syndrome till now. During her one week break she has recovered well and she feels good as well as she is good spirit. She has started her third cycle of Xeloda today- 1500 mg twice a day.

Recently she has started complaining of double vision. Also, she feels weak and tired after doing any activity. She also sometimes complains of feeling of emptiness in her head - as if nothing is there inside her brain and also complains of cramps which start from her brain and go down to her hand and spine. She also complains having trouble with concentration and focus. She is unable to meditate. She does her yoga exercises though. Other than that she has been doing fairly well. Her body balancing issues are gone, her Veritgo/Migraine like headaches have gone, vomiting has stopped completely...all the initial symptoms seem to have been brought under control. Overall she feels good and is in good spirits. Does this also mean that the disease is under control and it has not progressed?

We have done three more lumbar puncture tests or the CSF Cytology tests in the last two and half months, unfortunately the cancer cells are still there in her cerebrospinal fluid (CSF). Are there any tests through which we can do a comparative analysis of the effectiveness of the treatment given to her - like a before & after study??? Is there any way to find out the exact number of floating cancer cells in her cerebrospinal fluid (CSF). What kind of tests does your doctors ask you to do?

Is anyone getting medication to reduce the long term toxicity of Intrathecal Methotraxate (MTX) or Xeloda??

Is anyone using Cannabis to treat their brain mets? Is it effective?

Apologies for the long post:)

May 2, 2017 09:54AM Kaption wrote:

I've posted on other boards, but waited to post here because I just am having trouble understanding this disease. Long story- short. I've had bone mets since 2013. I understand bone mets.

After some numbness on the right side of my face a small lesion was found over my right eye, very near the eyeball. It's on the lining nearly in the fluid. The worst was assumed-that it would be LM. Had rads to that lesion and one month follow up MRI. Lesion reduced a tiny bit. And nothing new seen. From that, my RO believes this is not LM because I would have gotten much worse in the past couple of months. (I'm on Xeloda which is doing a fantastic job on my bone mets). Anyway, RO (who I respect immensely) said LM moves very quickly and there is not much that can be done. But, then I read here and see that some of you are dealing with it for quite a while.

All this to say, my MRI results were great but I'm having trouble relaxing and believing it's over. He is doing another MRI in 3 months to keep a close eye on it.

Such a confusing part of mbc!

Thanks for listening. Really, no one else understands!

May 3, 2017 09:47AM Kaption wrote:

Thanks so much Mandy! That does help. My RO was just so positive that it's not LM or I would be much worse already. He also said my symptoms would not be subtle. So, the little pangs and stabs I have on my forehead and top of my head are not LM. But, he also doesn't know what I have. It's sort of a wait and see deal. I am glad he's going to do another MRI in 3 months. I think that will be reassuring.

Your experience does help. I know all mbc is complicated, but it seems they know less about the brain area- especially LM.

Guess it's just time to breathe and enjoy what I have right now.

Thank you so much!!

May 30, 2017 11:07PM MameMe wrote:

I would love to see this thread continued, as I, too, am being tested for Leptomeningeal mets. I am reading everything I can on this, and am relating to your stories very strongly. So far, a brain MRI and a lumbar puncture have been clear. Today I did a neck, jaw area MRI, looking for stronger clarification of cranial nerves and soft tissues of neck. No results back yet. My oncologist wants another LP if nothing shows up on the last MRI. My markers have been pretty stable, around 60-70, and I am ER+ PR-, her2-. I think that er+ doesn't get lepto mets as often as triple neg or brac pos.

I will check in with more info soon, I am too tired to write more, busy day. Keep sharing, this is a really important topic

May 31, 2017 08:45AM Kaption wrote:

Yes, please! I am starved for information on LM!

May 31, 2017 11:02AM Kaption wrote:

Hi,

Yes, it's strange to have something that my oncs seem to have such little experience in.

My RO seemed to think I don't have LM or I would have deteriorated much more quickly. He thinks anyone who doesn't die in 3 months doesn't have LM. I respect him immensely, but this seems to be an area he does not know as well.

My initial symptoms were a numb right side chin and weird sensation on my cheek and temple. That was in November and they at first thought it was a mini stroke. I was out of state. When I got home I had an MRI that seemed fine. One month later another MRI showed the lesion above my right eyeball in the lining/fluid area. I had rads on that.

I had just started Xeloda during this time (failing Faslodex). I took some Dex during rads for swelling (hated it). Rads ended the end of March. Follow up MRI was good. Lesion reduced, nothing else scary floating around.

But since the end of March I have been absolutely drained. No energy at all. A few quick stabbing pains in my head. Weird, vibrating sensations in my groin and the feeling that something is wrapped around my left ankle. All weird stuff I don't know how to interpret.

I was on low dose prednisone for 2 weeks and I think it helped the fatigue. Stopped it last Thursday and hit the tired wall again Saturday.

Today is my regular check in with MO. I'm anticipating she'll put me back on prednisone a while.

My husband wants a CURE for the fatigue. He's having trouble accepting that I may feel like this for a while.

Hoping for good answers for us!!

Thanks! There are so few to talk to about this.

May 31, 2017 07:43PM Kaption wrote:

Linda,

Hugs for all you are going through! Oh my!

Just got back from a long visit with my MO. Bless her for taking on this fatigue because it's likely not just cancer. She's hanging in there with me to eliminate what it's not. I'm having a heart echo next Wednesday and she's contacting an endocrinologist for me. She's wondering if it's adrenal. She did a couple of tests for that and they came back in the low normal range. In the meantime I'm returning briefly to a very low dose of prednisone because I thought I felt a bit better on it. She is concerned that my face and ankles are already a bit puffy.

As she was talking about adrenal stuff I kept thinking "I've seen something about this on a previous scan." I got home and poured over my old test results and, sure enough, in 2013 when mbc was found two different radiologists mentioned an enlarged and oddly shaped left adrenal gland with a nodule on it. Hmmm...maybe nothing- but I will show it to her.

She did say that in the back of her mind she's wondering if the LM is a factor. Think she's trying to eliminate other possibilities before my next MRI.

What our bodies go through !

May 31, 2017 11:43PM Bestbird wrote:

Please forgive me for intruding on this thread. When Kaption mentioned that she would like to see additional information regarding LM, I wanted to take this opportunity to provide the chapter about LM from my complimentary MBC Guide. The 130+ page booklet can be requested by visiting: https://community.breastcancer.org/forum/8/topics/831507?page=3#idx_73

Breast Cancer Brain Metastasis (BCBM) and Leptomeningeal Metastasis (LM), which is also known as Carcinomatous Meningitis, are the two types of Central Nervous System (CNS) metastasis.Symptoms of LM may include headache, backache, loss of sensation in the face (especially the chin), loss of bladder or bowel control, constipation, dizziness, extreme fatigue, confusion, weakness or loss of sensation in the legs and inner thighs, vision problems and/or hearing difficulties.Elevated CerebroSpinal Fluid (CSF) pressure, white blood count, and protein levels, and lowered glucose levels can also be signs of LM.Some patients with LM have no symptoms at all.

CNS metastasis is more common in the following MBC patient populations than in other MBC patients, so these patients should be especially vigilant about reporting any symptoms described above to their doctor:

• HER2+
• TNBC
• Patients who have taken a Taxane-based chemotherapy (Taxane drugs are Taxol, Paclitaxel, or Abraxane)
• Patients with CK-19 mRNA-positive Circulating Tumor Cells (CTCs)

From: http://www.ascopost.com/issues/march-15,-2014/how-to-approach-the-problem-of-cns-metastasis-in-her2-positive-patients.aspx and http://www.cancernetwork.com/oncology-journal/management-breast-cancer-brain-metastases-moving-forward-new-options-are-still-needed and http://breast-cancer-research.com/content/8/4/r36

LM occurs when breast cancer spreads to the meninges, which are layers of tissue that cover the brain and the spinal cord.Metastases can spread to the meninges through the blood or they can travel from brain metastases via the cerebrospinal fluid that flows through the meninges.About 2% to 5% of patients with metastatic breast cancer experience LM.

Although LM usually occurs at a later stage in the course of metastatic breast cancer, in very rare instances, it can occur as a first metastasis.LM is difficult to treat because many drugs are not able to penetrate from the bloodstream through the meninges into the cerebrospinal fluid. Often brain metastasis and LM occur at the same time. For that reason, women diagnosed with LM should also have an MRI of the brain.From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

LM can be difficult to diagnose. The most common method is by withdrawing spinal fluid with a needle and examining it for breast cancer cells.This procedure is called a spinal tap or lumbar puncture.If the first lumbar puncture comes out negative, it must be repeated two more times to assure a 90% chance of an accurate diagnosis.Doing one puncture only assures a 45% accuracy.It is important that the lumbar puncture be close to the site of the suspected area of leptomeningeal metastasis.An MRI with gadolinium (a contrast agent) of the entire brain and spine can also be used to diagnosis LM and may be better than a CT scan.An MRI with a radioactive tracer can also be used to locate obstructions in the spinal fluid or blood flow caused by LM.However, on an MRI, inflammatory disease or local infection can sometimes be mistaken for LM.From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

Once LM is diagnosed, it is important to check:

• The patient's ER, PR and HER2 status, as this will help to determine potential therapies.

• Whether the disease is bulky or diffuse:

• Bulky Disease: Radiation therapy is only given to relieve symptoms in areas of bulky disease because chemotherapeutic agents do not appear to penetrate tumors or nodules (smaller tumors) in the meninges. From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1
• Diffuse Disease: Chemotherapy is given for diffuse disease and may extend life for several months, or sometimes for a longer time. From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

• Whether IntraCranial Pressure (ICP) is elevated. If intracranial pressure is elevated, radiation may be a way to relieve CerebroSpinal Fluid (CSF) obstruction if needed. Relief of CSF outflow obstruction has been shown to improve functional status and is likely to prolong survival in these cases.A VentriculoPeritoneal Shunt (VPS) placement procedure can be used, which carries a small risk of hemorrhage, infection, or shunt malfunction.However, placement of a VPS is a definitive treatment for elevated ICP, and may be combined with a reversible on/off valve to facilitate administration of IntraThecal (IT) chemotherapy.For those in whom a surgical procedure is not desired or tolerable, palliative Radiation Therapy is also effective in relieving CSF outflow obstruction, although the duration of benefit is variable.From: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3623833/

The information below focuses on medications to treat LM.In addition to drugs, palliative radiotherapy can be used with Intrathecal or intravenous chemotherapy.From:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3623833/

Unfortunately, there currently is no agreed-upon standard treatment LM. Sometimes the benefits of treatment are offset by treatment side effects.Especially if there is uncontrollable disease in other organs, treating symptoms of the disease but not the disease itself may be the best option.

Drug Delivery options for leptomeningeal metastasis

Depending on the therapy, drug delivery may be provided as follows:

• IntraThecally (IT) directly into the cerebrospinal fluid, usually via an Ommaya reservoir
• Orally
• Through an IV port

• Intrathecal drugs are usually delivered directly into the cerebrospinal fluid through an Ommaya reservoir, which is a device inserted in the head, under the scalp.The hair where the reservoir will be inserted is shaved and the patient is put to sleep or made very drowsy while the device is put in place. There may be a small raised area where the Ommaya reservoir is located.Like a port, the device remains in place during the course of treatment.Intrathecal therapy is generally reserved for patients whose systemic disease is under reasonable control and who are in good physical condition. It is important to have cerebrospinal flow studies done before intrathecal chemotherapy is undertaken to make sure there are no blockages. Occasionally, doctors will use radiation to relieve flow blockages.From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

Interestingly, one mbc patient indicated that because her doctor had worked at a Children's Hospital, he was versed in using childrens' ports and provided her with a pediatric Ommaya port, which she said is more comfortable than the adult version.

There is no direct evidence that IntraThecal (IT) chemotherapy, which is introduced directly into the cerebrospinal fluid, is better than intravenous chemotherapy, which is given through the veins. From: http://brainmetsbc.org/en/content/leptomeningeal-metastases-1

• Orally administered medications are usually taken in pill, capsule, or liquid form.
• IV (Intravenous) Ports: The types of chemotherapy "port" devices are listed in the section entitled "Chemotherapy."

treatments for leptomeningeal metastasis

LM drug options are varied, and may include the following drugs. Typically, Cytarabine, Herceptin, Methotrexate and Thiotepa are the most commonly used.

• ANG1005 (Not Yet FDA approved)
• CranioSpinal Irradiation (CSI)
• Cytarabine (DepoCyt)
• Gemzar (Gemcitabine)
• Herceptin, with or without Tykerb
• Hormonal Therapies
• Leucovorin
• Methotrexate
• Thiotepa (Thioplex)
• Whole Brain Radiation (WBR)
• Xeloda (Capecitabine)

• ANG1005: This is a Taxol-like drug being studied to treat brain metastases and Leptomeningeal Metastases (LM). Interim Phase 2 study results demonstrate that breast cancer patients with brain metastases treated with ANG1005, including a subset of patients with LM, achieved encouraging responses. Of the 21 heavily pre-treated patients with LM, 5 patients (24%) achieved a partial response and 11 patients (52%) had stable disease. Estimates of survival in patients with LM treated with ANG1005 predict a median survival of 38.4 weeks as compared to 4-6 weeks if left untreated, or 12-24 weeks with conventional chemotherapy. In addition, ANG1005 demonstrated intracranial and extracranial antitumor activity in patients with various other subtypes of breast cancer including patients previously treated with paclitaxel. ANG1005 was shown to be generally safe and well-tolerated, and demonstrated an adverse event profile consistent with conventional taxane therapy.From: http://www.businesswire.com/news/home/20151120005128/en/Angiochem-Reports-Positive-Clinical-Data-ANG1005-Breast

• CranioSpinal Irradiation (CSI): Full CranioSpinal Irradiation to the skull and/or spine may lead to complete or partial response in approximately half of breast cancer patients with leptomeningeal disease, though it is not curative and reports are limited.This therapy can cause significant side effects, so other treatments may be preferable. From: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3625760/

• Cytarabine also known as DepoCyt, Cytosar-U, Ara-C, or Cytosine Arabinoside belongs to a group of drugs called anti-metabolites which interfere with cells' ability to make DNA and RNA, which stops the growth of cancer cells.

• Gemzar (Gemcitabine): This is a commonly used chemotherapy drug for MBC which may be helpful in cases of LM. From: http://emedicine.medscape.com/article/1156338-treatment

• Herceptin: For women with HER2 positive LM there is increasing and seemingly successful use of intrathecal Herceptin both with chemotherapy and alone.Many of these successes have been reported as case studies, although one small trial was done in Spain with promising results.Several trials are now underway to verify these results in larger numbers of patients.In these case studies, low dose (15mg-40mg weekly) and high dose (100mg-150mg weekly) Herceptin have been used.High doses appear not to be toxic and the brain swelling that it causes can be controlled by gradually increasing the dose of Herceptin and using steroids. Intrathecal Herceptin can also be delivered by lumbar puncture to the spine.One woman survived 27 months after LM diagnosis.A complete leptomeningeal response, with no evidence LM at necropsy, was achieved after receiving 67 weekly administrations of intrathecal Herceptin with marked clinical improvement and no adverse events. In some cases, Herceptin may be combined with Tykerb.. From: http://www.ncbi.nlm.nih.gov/pubmed/21369716

• Hormonal Therapies: There have been reports of remissions with Arimidex, Aromasin, Letrozole, Megace and Tamoxifen.Sometimes the drug may be administered IntraThecally.From:http://www.brainmetsbc.org/en/content/leptomeningeal-metastases-1 and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3625760/

• Leucovorin can be used as a rescue after dose-intense Methotrexate therapy to lessen the effects of MethotrexateFrom: http://www.aboutcancer.com/meningeal_review_utd.htm

• Methotrexate is one of the most commonly used chemotherapy agents for LM. It appears as though IV chemotherapy with high-dose Methotrexate may confer increased survival over radiation therapy alone.From:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3623833/

• Thiotepa (Thioplex) is another commonly used agent.This drug is cleared from CerebroSpinal Fluid within minutes and has survival curves similar to those of Methotrexate with less neurologic toxicity From: http://emedicine.medscape.com/article/1156338-treatment

• Whole Brain Radiation (WBR): As its name indicates, in this therapy, radiation is delivered to the entire brain.One study reported a series of patients with leptomeningeal spread of cancer, of which 46 patients had breast cancer, and 43 underwent WBR. Among the breast cancer patients, there was a 61% "crude" rate of stabilization or improvement of symptoms with WBR.From:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3625760/

Preservation of Memory with WBR:There is a type of WBR that is a "hippocampus sparing procedure" which may help to preserve a degree of memory that might otherwise be lost as a result of the procedure.In a study of 113 patients, at four months after undergoing the hippocampus sparing procedure, the decline in recall (as compared to baseline) was 7%, significantly better than the 30% cognitive decline in the historical control group that received WBR without thehippocampus sparing procedure.From:http://jco.ascopubs.org/content/early/2014/10/21/JCO.2014.57.2909

• Xeloda (Capecitabine): There have been some reports of remission with this drug.From: http://www.brainmetsbc.org/en/content/leptomeningeal-metastases-1

Jun 1, 2017 09:56AM Kaption wrote:

Thank you SO MUCH, Bestbird for that info. I have pieces of it-but not all of it or put together like that. Very helpful!! Thank you!

Jun 1, 2017 10:42AM LindaE54 wrote:

Mameme - Thankfully no more headaches. I wonder if Fas was the culprit because headaches started tapering off when I stopped it. I weaned off Dex about 10 days ago and still no headaches. The speech problems are driving me crazy! I hope you feel better as the day goes by and that your results get in soon.

Jun 1, 2017 08:59PM mandymoo wrote:

Wow, Bestbird. Thank you so very much for sharing this vital information. I have learned so much more about LM, and I find it very intriguing.

warm hugs

Mandy xxxxx

Jun 5, 2017 11:29AM Kaption wrote:

Best wishes on your procedure tomorrow, MameMe!!