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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 4 or Mets.

Posted on: Jan 6, 2013 03:54AM

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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Oct 18, 2018 12:02AM Ihopeg wrote:

Hi After hearing the worst news possible, about LM just like that I am recovering from the shock and fighting. Had spinal tap and ommaya reservoir put in. Had 3 injections of methatrexate. Go again Friday. I have bone biopsy to confirm what kind of breast cancer this is so I can get 2 opinion about extensive bone mets. I cannot beleive I went from working full time on October 5th til now! My question is : How long are people living on here with Leptomeningeal disease? Haven’t heard any news about Valerie Harper lately. Any input, prayers or experience will be greatly appreciated. Thank you so much! ilene
I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/29/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/7/2007 Chemotherapy 1/10/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/30/2007 Breast, Lymph nodes Hormonal Therapy 8/19/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Oct 18, 2018 09:58AM illimae wrote:

ihopeg, I don’t think this thread is very active but there are a couple ladies with lepto mets on the brain mets sisters thread. I had a possible lepto met on an MRI a few months ago, fortunately the spinal tap was negative and it was just a regular met close to but not actually in the fluid. Anyway, I did ask my neuro onc at MD Anderson about the Ommaya port and lepto treatment. She said that they have a couple of patients who’ve been using their ports for lepto mets for over 7 years. This is not the norm of course but it is possible 🙂

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Oct 18, 2018 09:32PM Ihopeg wrote:

Thank you so much! I’ll try there too
I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/29/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/7/2007 Chemotherapy 1/10/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/30/2007 Breast, Lymph nodes Hormonal Therapy 8/19/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Jun 1, 2019 07:50PM - edited Jun 5, 2019 09:57AM by mike3121

This Post was deleted by mike3121.

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