Posted on:
Jan 6, 2013 03:54AM
Victor Harbor, SA, Australia
Joined:
Dec 2012
Posts:
808
Latest activity:
Feb 18, 2020
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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Ihopeg
Broomall pa
Joined:
Nov 2006
Posts:
378
Latest activity:
Feb 12, 2020
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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-
illimae
Houston
Joined:
Dec 2016
Posts:
5,114
Latest activity:
Dec 1, 2021
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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)
Ihopeg
Broomall pa
Joined:
Nov 2006
Posts:
378
Latest activity:
Feb 12, 2020
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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-
mike3121
Joined:
Jan 2013
Posts:
399
Latest activity:
Jun 12, 2020
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Jun 1, 2019 07:50PM
- edited
Jun 5, 2019 09:57AM
by
mike3121
This Post was deleted by mike3121.