Topic: Leptomeningeal Metastases or Carcinomatous meningitis in Brain

Forum: Stage IV/Metastatic Breast Cancer — 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 04:54AM

Posted on: Jan 6, 2013 04:54AM

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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Nov 4, 2013 08:04PM amlg1 wrote:

JGreen so sorry to hear of your friends news.My prayers are with all...Robin so glad your doing better.

Annamarie

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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Nov 5, 2013 04:48PM mandymoo wrote:

Robin, good to hear about the omaya port not being painful etc. and that the shunt is working and that your headaches are gone. Here's hoping that things will look good for a long time. xxxx

Cheers

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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Nov 6, 2013 09:49AM RobinNY wrote:

thank you Mandy and Annamarie. Had my first chemo treatment yesterday and my second one is tomorrow. Hope to get my stitches out tomorrow too!

Hugs

Robin

If what doesn't kill you...makes you stronger ~ I should be able to bench press a Buick. Courtesy of "Fight like a Girl" Dx 10/1999, ILC, 2cm, Stage IIB, Grade 2, 1/5 nodes, ER+/PR+, HER2- Hormonal Therapy 3/7/2010 Femara (letrozole) Dx 4/8/2010, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Hormonal Therapy 7/11/2012 Faslodex (fulvestrant) Chemotherapy 9/30/2012 Xeloda (capecitabine) Chemotherapy 2/17/2013 Navelbine (vinorelbine) Chemotherapy 6/16/2013 Taxol (paclitaxel) Chemotherapy 8/17/2013 Doxil (doxorubicin)
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Nov 6, 2013 05:53PM mandymoo wrote:

Hi Robyn, Great to hear that you will get your stitches out tomorrow. xxx By the way, which chemo are you on now? This sounds very exciting. I was watching a TV show this week with Valerie Harper who also has LM and she is responding well to treatments as well. I am of the opinion that when a celebrity suffers from a debilitating condition, that more research is poured into that area.... just my 2 cents worth and I am Ok with that lol.

Cheers

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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Nov 7, 2013 08:04AM RobinNY wrote:

mandy

It's methotrexate.

If what doesn't kill you...makes you stronger ~ I should be able to bench press a Buick. Courtesy of "Fight like a Girl" Dx 10/1999, ILC, 2cm, Stage IIB, Grade 2, 1/5 nodes, ER+/PR+, HER2- Hormonal Therapy 3/7/2010 Femara (letrozole) Dx 4/8/2010, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Hormonal Therapy 7/11/2012 Faslodex (fulvestrant) Chemotherapy 9/30/2012 Xeloda (capecitabine) Chemotherapy 2/17/2013 Navelbine (vinorelbine) Chemotherapy 6/16/2013 Taxol (paclitaxel) Chemotherapy 8/17/2013 Doxil (doxorubicin)
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Nov 8, 2013 03:50AM mandymoo wrote:

Robyn, Thanks for that. 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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Nov 18, 2013 08:50PM chegushe wrote:

Hi everyone,

Im posting on behalf of my mom who is triple negative stage 4 with mets in her bones, liver and now LMD. the LMD came to us as a shock because she was doing so well on the chemo for her systemic mets (which are stable and somewhat improved). so now they plan on putting an ommaya port and starting her on intra thecal topotecan.

ive always got a lot of hope and inspiration from breastcancer.org and i am back for some more. Any of u guys had any experience with IT topotecan? ive read about a lot of women on xeloda but i dont think moms neuro onc is in favor of it as the only form of treatment for the LMD (even tho my mom previously went into remission when she was on xeloda)

my moms been fighting this crappy disease since 1989 and it keeps coming back to haunt us :(

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Nov 18, 2013 09:14PM formygirls wrote:

I have had it but mine were given through a spinal tap every time. I had to take steriods for a week with each tx. I did not get the omaya port at that time as my neuro onc was more comfortable with the spinal tap procedure. I cannot add much in terms of SE as I had on the same day as four other chemos which were both IT through spinal tap and IV chemo. I got six txs every three weeks. This was last summer. Good luck to your mom.

Initially diagnosed with triple neg stage 3 bc in Feb 2008. Mets dx in Feb 2012 with change in receptors .Mets to liver, brain, bone, lung and nodes and central nervous system. Dx 2/3/2012, IDC, 6cm+, Stage IV, Grade 3, 2/29 nodes, ER+/PR-, HER2+
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Nov 21, 2013 05:02AM JGreen wrote:

Hi everyone,

I am so sad to say that my dear friend Jenn passed away on October 28th. She was only 45 and had small children and has left a grieving and devastated circle of family and friends who loved her deeply. This disease stinks.

To Mandy, Annamarie, Laurie and others who may have seen the few posts I had made on Jenn's situation, you will remember that she was due to have IT DepoCyt but that her cancer had spread further and she was advised not to continue. She passed away only two weeks later. I struggled with even posting this awful news because I didn't want to discourage or frighten anyone who is battling leptomeningeal mets, but to be honest, you all are having your LM aggressively treated and, sadly and frustratingly, when Jenn was first diagnosed with LM in the middle of August, her MOs told her there was nothing more they could do other than WBR. It wasn't until late September after her husband pushed them and made suggestions of his own that IT DepoCyt was decided on but by the time the docs finally arranged for the Ommaya reservoir, it was too late.

Chegushe, I am sorry to read about your mother's LM diagnosis but if you read back through this thread there are a few drugs that people are receiving intrathecally or by spinal tap so there are effective treatments out there. It is, as you said, a crappy disease.

I am thinking of all of you with love, hope and support.

Hugs,

Erin

Dx 5/2011, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Nov 21, 2013 06:41PM mandymoo wrote:

JGreen, I am so very sorry to hear this bad news. It came as a shock to me that she went so quickly. Thank you so very much for letting us know how your friends journey continued and also how her husband had to push in order to get treatment. My thoughts are with you and her family. I am writing this with a tear in my eye and realise that life is so precious and we never know what lies ahead of us. Here's hoping that a cure for cancer will be found soon.

Sending you cyber hugs

Mandy xxx

"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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