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Topic: Stage IV breast cancer and Leptomeningeal carcinoma

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jan 11, 2019 07:15AM

Ihopeg wrote:

Hi. I have a question. I was diagnosed in October with Leptomeningeal and stage 4 bc to my spine and pelvis. Had methotrexate and then switched Drs and had proton radiation. Went to dr yesterday I and she said I should either do Xoleda or try for a clinical trial. My question is Why do these treatments and feel worse when there is nothing to do about the Leptomeningeal? I feel pretty good now. Can actually go out for periods of time. Thank you for any suggestions and comments. I really appreciate it. I am so confused and scared Thanks , 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)
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Jan 12, 2019 09:51AM SchnauzerMom wrote:

Hi Ilene,

So sorry you are dealing with this, but glad that you are feeling pretty well. Certainly I have no answer--in fact, I just now had to read up on leptomeningeal disease. All I can speak to is the Xeloda. For me it was a very tolerable medicine (hands and feet peeled, but manageable). Is your doctor thinking that treatment will continue to keep symptoms at bay for longer? Is it something you might try, and if it makes you feel worse, you wouldn't have to continue? This disease is scary, and I see that you've been dealing with it for a long time (and also that you are ILC, me, too).

mets to liver, bones Dx 11/21/1987, ILC, <1cm, Stage I, ER+/PR+, HER2- Dx 12/11/1989, ILC, Stage IIIA, mets, ER+/PR+, HER2- Chemotherapy 1/9/1990 CMF Hormonal Therapy 7/30/2012 Faslodex (fulvestrant) Hormonal Therapy 7/30/2012 Femara (letrozole) Dx 7/31/2012, ILC, Stage IV, mets, ER+/PR+ Targeted Therapy 1/14/2013 Avastin (bevacizumab) Chemotherapy 1/14/2013 Taxol (paclitaxel) Chemotherapy 11/9/2013 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 4/1/2014 Navelbine (vinorelbine) Hormonal Therapy 7/22/2014 Aromasin (exemestane) Targeted Therapy 7/22/2014 Afinitor (everolimus) Chemotherapy 7/12/2016 Xeloda (capecitabine) Chemotherapy 12/2/2016 Halaven (eribulin) Hormonal Therapy 5/31/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy 7/17/2018 Verzenio Chemotherapy Doxil (doxorubicin)
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Jan 12, 2019 12:30PM Ihopeg wrote:

Hi thanks for your post! I agree with you that I think I should start the chemo pills and see how I feel. I want to go on a quick vacation with my 2 grown kids first. I think the dr is trying to treat the triple neg stage 4 to my bones. Right now I have no symptoms of the BC. I see you have really been thru so much and I thank you for your reply. Thank you, 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)

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