Topic: Leptomeningeal Metastases or Carcinomatous meningitis in Brain

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

Posted on: Jan 6, 2013 05:54AM

Posted on: Jan 6, 2013 05:54AM

mandymoo wrote:

Hi there, I would like to know who has been diagnosed with Leptomeningeal Metastases (also known as Carcinomatous Meningitis) in the brain. What treatments are they receiving and how long since you were diagnosed. I have read through the discussion boards but information is very limited. Thanking you in advance.  

Mandy 

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Right, 3cm, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
Log in to post a reply

Page 9 of 13 (124 results)

Log in to post a reply

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
  • 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/
  • 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


Dx 10/6/2011, IDC, Left, Stage IV, ER+/PR+, HER2-
Log in to post a reply

Jun 1, 2017 09:38AM LindaE54 wrote:

Wow Bestbird - thanks for your input.

Kaption - I'm so glad your MO is investigating the cause of your fatigue. May it be something easy to treat.

Mandymoo - So happy you're doing well.

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/19/2013 External: Bone Hormonal Therapy 12/30/2013 Femara (letrozole) Hormonal Therapy 5/28/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/29/2014 External: Bone Radiation Therapy 8/28/2014 External: Bone Hormonal Therapy 9/25/2014 Femara (letrozole) Radiation Therapy 12/14/2014 External: Bone Hormonal Therapy 2/17/2017 Faslodex (fulvestrant) Chemotherapy 5/15/2017 Taxol (paclitaxel) Radiation Therapy 6/5/2017 External: Bone Chemotherapy 10/3/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
Log in to post a reply

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!


Dx 8/2005, DCIS, Left, Stage 0, ER+, HER2+ Dx 5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+ Dx 6/2013, Stage IV, metastasized to bone, ER+, HER2- Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
Log in to post a reply

Jun 1, 2017 10:10AM MameMe wrote:

Hi Bestbird, I was thinking about your guide when you thankfully joined in here. I had read the brainmetsbc material before, but you added some details that are very helpful. Having your good mind working on bc issues is a blessing to all of us.

Today is not a good one so far, as I have queasiness from Tuesday,s Doxil, and am still waiting to hear results from the neck and jaw mri. I am usually good at distracting myself and getting engaged in activity, but once in awhile I just poop out. I do have some tasks to do that will help me avoid too much brooding...

Kaption, are you still taking Xeloda? I used it for 2 years, and it does have significant fatigue with it. I went on a few chemo holidays in order to get energy back. With your prednisone, what is a low dose? Also, did they biopsy something to find out about the her2 change?

Hi Linda, Of course I remember you, and am really glad you wrote in here. Do you still have head pain? I was so incredibly relieved when that let up. My tongue problem sounds just like yours, only veering to the left. I hope my speech doesn,t worsen, as at times, Daffy Duck takes over and its quite annoying! I apparently have some met action in cervical bones but no indication yet of compression of nerves. Keep us posted about how radiation goes.

Hi Mandy, I am so glad to hear how your tx has been helping. I want to go back and read your entries now. Thanks so much for sharing. Hugs all around.

Widespread, low volume mets to eye, lungs, chest wall and bones, dx 4/14/14. "There's gotta be a pony in this s--t somewhere..." Dx 2/2003, IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 12/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Dx 4/4/2014, IDC, Left, 2cm, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/1 nodes, ER+/PR-, HER2-, Chemotherapy 5/1/2017 Doxil (doxorubicin) Chemotherapy 3/1/2018 Halaven (eribulin) Targeted Therapy Afinitor (everolimus) Chemotherapy Taxol (paclitaxel) Hormonal Therapy Aromasin (exemestane) Chemotherapy Gemzar (gemcitabine) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Chemotherapy Xeloda (capecitabine)
Log in to post a reply

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.

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/19/2013 External: Bone Hormonal Therapy 12/30/2013 Femara (letrozole) Hormonal Therapy 5/28/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/29/2014 External: Bone Radiation Therapy 8/28/2014 External: Bone Hormonal Therapy 9/25/2014 Femara (letrozole) Radiation Therapy 12/14/2014 External: Bone Hormonal Therapy 2/17/2017 Faslodex (fulvestrant) Chemotherapy 5/15/2017 Taxol (paclitaxel) Radiation Therapy 6/5/2017 External: Bone Chemotherapy 10/3/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
Log in to post a reply

Jun 1, 2017 10:46AM Kaption wrote:

Mameme,

No one has mentioned a new biopsy. That is interesting, as I wasHER2 positive at my original dx, then changed to negative about a year later (after failing herceptin & perjetta. I'm "borderline".) I think there's a special word for it. I guess my little lesion over my right eye could be biopsied since it only shrank 20%.

This is my week off Xeloda and she's giving me an extra week off now. The prednisone dose is 5mg for just this week.

Thanks!


Dx 8/2005, DCIS, Left, Stage 0, ER+, HER2+ Dx 5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+ Dx 6/2013, Stage IV, metastasized to bone, ER+, HER2- Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
Log in to post a reply

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



"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Right, 3cm, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
Log in to post a reply

Jun 5, 2017 10:06AM MameMe wrote:

OK, so, the neck area mri showed some kind of mass in the base of tongue or thoat right next to it, that will get biopsied tomorrow. Its at day surgery, thank goodness, as the procedure is pretty invasive. Yuck. Hope to get results Wed or Thursday. I would like the wild goose chase to end then!

Meanwhile, no head pain, I feel ok and my tongue is not worse. I'll take it

Widespread, low volume mets to eye, lungs, chest wall and bones, dx 4/14/14. "There's gotta be a pony in this s--t somewhere..." Dx 2/2003, IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 12/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Dx 4/4/2014, IDC, Left, 2cm, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/1 nodes, ER+/PR-, HER2-, Chemotherapy 5/1/2017 Doxil (doxorubicin) Chemotherapy 3/1/2018 Halaven (eribulin) Targeted Therapy Afinitor (everolimus) Chemotherapy Taxol (paclitaxel) Hormonal Therapy Aromasin (exemestane) Chemotherapy Gemzar (gemcitabine) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Chemotherapy Xeloda (capecitabine)
Log in to post a reply

Jun 5, 2017 11:29AM Kaption wrote:

Best wishes on your procedure tomorrow, MameMe!!


Dx 8/2005, DCIS, Left, Stage 0, ER+, HER2+ Dx 5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+ Dx 6/2013, Stage IV, metastasized to bone, ER+, HER2- Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
Log in to post a reply

Jun 5, 2017 04:22PM LindaE54 wrote:

MameMe - I hope that mass is benign. Good luck tomorrow.

I started rads to C1 and clivus today - it went well. No headache or nausea so far. One down, four more to go.

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/19/2013 External: Bone Hormonal Therapy 12/30/2013 Femara (letrozole) Hormonal Therapy 5/28/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/29/2014 External: Bone Radiation Therapy 8/28/2014 External: Bone Hormonal Therapy 9/25/2014 Femara (letrozole) Radiation Therapy 12/14/2014 External: Bone Hormonal Therapy 2/17/2017 Faslodex (fulvestrant) Chemotherapy 5/15/2017 Taxol (paclitaxel) Radiation Therapy 6/5/2017 External: Bone Chemotherapy 10/3/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)

Page 9 of 13 (124 results)

Scroll to top button