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)
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Apr 9, 2014 04:15PM Angelrose wrote:

Just diagnosed with LM today as well as mets to the bones, lungs and liver. I appreciate this thread. It gives me some hope.

Dx 4/5/2011, IDC, 6cm+, Stage II, Grade 3, 3/10 nodes, ER-/PR-, HER2+ Chemotherapy 5/9/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 8/1/2011 Herceptin (trastuzumab) Radiation Therapy 11/21/2011 Breast, Lymph nodes
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Apr 9, 2014 06:20PM mandymoo wrote:

Hi Angelrose, I hope that you get great results from what ever treatment you will be on. Keep us informed as to how you are going. I think that some of the newer drugs do give us hope. All the research that is available is more than 5 years old and does not have the newer drugs. Thinking of you and also Janet. ((hugs))

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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Apr 9, 2014 09:52PM Angelrose wrote:

 I will have that ommaya reservoir put in. Also will start on Xeloda and Tykerb.  I will keep you posted.

Hugs back:) 

Angela


Dx 4/5/2011, IDC, 6cm+, Stage II, Grade 3, 3/10 nodes, ER-/PR-, HER2+ Chemotherapy 5/9/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 8/1/2011 Herceptin (trastuzumab) Radiation Therapy 11/21/2011 Breast, Lymph nodes
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Apr 10, 2014 12:42AM mandymoo wrote:

Angela, Sounds like a good plan. Here's hoping it will kick LM's butt. xx

Warm hugs

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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Apr 16, 2014 07:38PM mandymoo wrote:

Just thought I would put this inspirational link up on the thread about Valerie Harper even though she did not have breast cancer, she did have LM.

http://bit.ly/1j1rFXI

"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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Apr 22, 2014 11:15AM Janlee5802 wrote:

Just thought I'd update you on what my treatment is.  I had the ommaya port put in last week Monday and had my first intrathecal injection of depocyt Wednesday afternoon.  I will receive injections every two weeks.  I also started Xeloda last Tuesday evening for the systemic treatment.  Here's hoping that we kick some butt!!! 

Dx 11/2008, IDC, 2cm, Stage IIIA, Grade 3, 8/8 nodes, ER+/PR+, HER2- Surgery 2/4/2009 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/15/2009 Reconstruction (left); Reconstruction (right) Surgery 10/14/2009 Prophylactic ovary removal Dx 5/3/2013, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2- Targeted Therapy 9/1/2013 Afinitor (everolimus) Radiation Therapy Breast
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Apr 22, 2014 06:49PM mandymoo wrote:

Janet, thank you for the update. Sending you cyber hugs. Here's hoping this treatment works. Please keep us informed if you can of your progress. 

Warm hugs

Mandy x

"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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Apr 24, 2014 02:56PM amlg1 wrote:

Janet,I too have LM,I also had an ommaya port and depocyte almost 3 years ago.I had to stop ommaya after 3months,because I was getting fluid on brain,I had a shunt put in.The good news is It has been 3 years in may that I was diagnosed with Lm.I still go for chemo gemzar and herceptin,2 weeks on 1 week off.I look and feel better than I did 2 years ago.I will be getting my Brain MRI in May ,I am positive it will be good,so hopefully this will give you inspiration.When I was first diagnosed,I thought this is it.It is 5 years altogether when I was frst diagnosed with BC.My prayers are with you.

                                                                                                                 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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May 1, 2014 11:10AM Janlee5802 wrote:

Hi Anna,  thank you for posting.  You are definitely an inspiration.  I went in yesterday for my second intrathecal treatment.  Three years is amazing!!  I hope to be as fortunate as you have been.  The goal is to complete 4 treatments and then do another MRI in June.  It's good to know that you're feeling better than two years ago.  Please keep in touch and let me know how you're doing.

Dx 11/2008, IDC, 2cm, Stage IIIA, Grade 3, 8/8 nodes, ER+/PR+, HER2- Surgery 2/4/2009 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/15/2009 Reconstruction (left); Reconstruction (right) Surgery 10/14/2009 Prophylactic ovary removal Dx 5/3/2013, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2- Targeted Therapy 9/1/2013 Afinitor (everolimus) Radiation Therapy Breast
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May 2, 2014 10:07PM mandymoo wrote:

Anna, my thoughts are with you, and I agree, I hope your journey will be as fortunate as Anna's. June is not far away so please let us know when you get your MRI results. Fingers crossed. ((hugs))

"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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