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 02:54AM

Posted on: Jan 6, 2013 02:54AM

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)
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May 19, 2014 01:13PM 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?

Dx 11/2008, IDC, 2cm, Stage IIIA, Grade 3, 8/8 nodes, ER+/PR+, HER2- Surgery 2/3/2009 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/14/2009 Reconstruction (left); Reconstruction (right) Surgery 10/13/2009 Prophylactic ovary removal Dx 5/3/2013, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2- Targeted Therapy 8/31/2013 Afinitor (everolimus) Radiation Therapy Breast
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May 20, 2014 05:26AM mandymoo wrote:

janlee5802,  the only side effects that I know of are the hand foot syndrome and cramping and diarrhoea as well as feeling nauseous. Not sure about the headaches or feeling unstable, I thought that might be the brain.  The side effects do become manageable after a while. There is a Xeloda thread, so you might want to post your query on that thread. I hope that you start to feel better soon. (I ended up in hospital during my first round of Xeloda.. Cramping, diarrhea, nauseous, and then bloody stools. Dosage was reduced and all is ok now). ((((Hugs)))) xx

"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)
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May 22, 2014 12:10PM 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.

Anna.7/22/11 mets to spinal fluid.7/1/2011 now met to brain:( Stage IV Dx 4/22/2009, ILC, 2cm, Stage IIIC, Grade 3, 31/34 nodes, ER-/PR-, HER2+
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Jul 5, 2015 01:41AM arizonafamily wrote:

Hello all,

My mother is 54 and was diagnosed with Stage IV adenocarcinoma of the breast (so breast cancer pretty much) in April 2014. She has gone through chemo on and off ever since. As of 3 weeks ago, she started experiencing pain around her gallbladder. An exam revealed she has excess spinal fluid around her brain. Next, a spinal tap showed breast cancer cells in her cerebrospinal fluid. So as of around 3 weeks ago, she has had full-brain radiation treatment twice a day on weekdays.

Unfortunately, around the time she started radiation, she started experiencing excruciating pain from her head, down to her neck and spine. She has been on many pain meds ever since: From the meds to the radiation to the pain, she has been very weak for the past few days and bedridden for nearly 24 hours a day.

DOES ANYONE KNOW WHY THIS SPINAL PAIN IS OCCURRING? Is it a tumor or excess spinal fluid in her brain that is causing pressure on her head or spine? Feedback needed ASAP! Thank you for your time and I hope all is well with you who are reading this.

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Sep 29, 2015 02:04PM 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?

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Oct 30, 2015 05:12PM mandymoo wrote:

Hi Jessica, hopefully, the radiotherapy has targeted the cancer cells in that area and hopefully, there is no evidence in that area. Headaches and vomiting are symptoms of mets in the brain area, so this sounds good.


"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)
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Nov 26, 2015 08:45PM - edited Nov 26, 2015 08:52PM 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)Sad. 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:)

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Jan 11, 2016 01:59PM scogrady wrote:

Hi Mandy- I see that a couple of years ago you were diagnosed with Lepto. My mom was just diagnosed after 6 years of living with metastatic breast cancer. Would you mind telling me your treatment? I asked for her to be put back on xeloda from reading blogs. I wanted to start with a treatment less harsh first. It worked great for her 6 years ago when she was first diagnosed, but then stopped working about 9 months after, so I wonder if it can be successful the second time around. I would love to know how you have been since your diagnosis and any pointers you may have. My mom is being treated at Sloan Kettering supposedly one of the best cancer centers n the US. But they just seem out of thier depth like they are ready to give up on her. It makes me happy to see people like yourself doing well after diagnosis. Any info would be greatly appreciated.

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May 2, 2017 06:54AM 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!


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)
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May 3, 2017 05:16AM mandymoo wrote:

Kaption,

Xeloda crosses the blood brain barrier and there are a few of us with LM that have had success with Xeloda, and yet a lot of others have not. And with some others, they have had to have different treatment which worked for them, so we are all just so very different.

Like Breast Cancer has so many different types of breast cancer and different grades and stages, I think that LM also is different for everyone else as well with what type or what grade it is and where it is located. That seems to be my only answer, but I am only guessing. I am not sure exactly where the Leptomeninges are. I know that they are in the lining surrounding the brain, but which lining? there are probably two or three different linings surrounding the brain, and then it goes along the brain stem and also in the spinal fluid. So I think that where you have your LM plays an important part but also the grade etc. Mine was in the right parietal area of my brain. I had another one in the lining above my left eye which was not LM and another met in the lining right at the top of the brain at the front that separates the two halves if that makes sense.

Just to put your mind in a positive frame of mind, I was diagnosed with LM in November 2012 and my prognosis then was dismal, with prognosis of weeks maybe months, but I was put onto Xeloda straight away. I also had mets in the liver and lungs as well as bones at at the same time. Fast forward 9 weeks later and CT scan and MRI scan showed regression in the organs but not the bones and I was NED in all the organs about 15 months later.

I hope that Xeloda keeps working and hopefully that it was not LM, however if it is then at least Xeloda may keep it at bay.

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)

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