20+ Years of MBC Treatment

“You’ve been on cancer treatment for over 20 YEARS?”

I nod my head.

It amazes some people that I’ve been living from treatment to treatment since being diagnosed with metastatic breast cancer (MBC) in 1998.

That’s how those of us with MBC live our lives.

Some have asked about my treatment history.  After being asked so many times, I put my chart on a timeline that spanned 9 feet.  Here is the tabular view.  Click on the hotlinks to if you’d like more information.

Item Treatment Start Date End Date Notes
1.0 Lumpectomy 7/7/95 Stage 2a, 1+node, ER-, PR-, HER2-  Age 42
2.0 Cytoxin, Methotrexate, 5FU 8/1/95 2/1/96 6 Rounds Chemo, Radiation after 3rd Cycle
3.0 Radiation to Breast 12/1/95 12/31/95 30 Rounds, Right Breast
4.0 Biopsy – Breast 1/3/97 Rt Breast Biopsy-benign (dead tissue)
5.0 CT Scan 10/16/98 Suspected mets, left scapula, left sacroilliac, left ischium, pubic bone
6.0 L Ishium bone biopsy 11/23/98 Bone Mets Confirmed: ER+, PR-, ER2-
7.0 Adriamycin Cytoxin 12/8/98 3/4/99 #1 Bald, 3 rounds, didn’t work
8.0 Portacath Installed 12/9/98 6/28/05 Right Side
9.0 Aredia 2/12/99 7/19/99 6 cycles, Stopped before having bone marrow transplant
10.0 Taxol Carboplatin 4/9/99 7/22/99 5 cycles; worked
11.0 Autologous Bone Marrow Transplant 3/25/99 11/1/99 STAMP V HDC/SCR Trial
11.1 Stem cell collection 8/16/99 8/23/99 3 Hours Daily, City of Hope
11.2 Daily Chemo 24 hour 9/10/99 9/14/99 Cytoxin, Carbo, Thiotepa, Mesna
11.3 Stem cell infusion (PSCR) 9/17/99 Followed by 2 weeks in hospital, blood transfusions
12.0 Tamoxifen 1/1/00 1/1/01 Daily oral pills
13.0 Emergency Appendectomy 3/13/00 Likely side effect from Chemo
14.0 Aredia 9/5/00 7/1/06 Developed Osteonecrosis of the Jaw
15.0 Biopsy-Breast 10/3/00 Benign – palpable lump
16.0 Arimidex 1/1/01 1/1/06 Mets advanced to spine, right knee after Tamoxifen
17.0 Femara 1/1/06 6/5/09 Mets advanced in spine, ribs, sacrum, left acetabullum
18.0 Left  Breast Reduction 3/27/06 Equalize left side with right
19.0 BRCA 1/2 test 1/18/07 Negative BRCA mutations
20.0 Faslodex 6/5/09 More mets-pelvic area; Faslodex resulted in Full Body Hives, discontinued
21.0 Aromasin 8/25/09 12/20/09 More spine mets
22.0 Xeloda 1/1/10 5/10/11 #2 Bald
23.0 Pancreatitis 1/26/10 1/31/10 6 days in hospital, from Xeloda
23.0 Xeloda Reduction 2/12/10 Reduced 25%
24.0 Xeloda Reduction 4/23/10 Reduced another 25% due to low blood counds
25.0 Mastectomy 3/30/11 New Primary Breast Tumor; ER+, PR-, HER2+
26.0 Portacath 5/16/11 2/19/13 Left Side
27.0 Taxol  5/17/11 10/19/11 More mets-skull, spine, pubic bone
28.0 Herceptin 5/17/11 12/12/17
29.0 Arimidex 10/20/11 7/17/13 More mets-sternum, spine (2nd time on drug)
30.0 Bowel Obstruction 6/26/12 Diagnosed with Crohn’s side effect from chemo
31.0 Right Breast Reconstruction Latissimus dorsi flap
31.1 Mycobacterial infection  5/24/13 Expander infected; removed expander
32.0 Taxol Gemzar 12/10/13 7/1/14 #3 Bald; 6 cycles of TG; mets tumors grow
33.0 Aromasin 1/14/14 7/14/14 Taken after cancer stabilized with TG, second try with this drug
34.0 Kadcyla 7/8/14 11/21/14 #4 Bald, 3 cycles; issue with low blood counts
35.0 Ixempra 10/14/16 9/5/17 #5 Bald, was just on Herceptin between Kadcyla and Ixempra
36.0 Perjeta 5/1/15 12/12/17 Added to Herceptin
37.0 Apply for Clinical Trial 9/5/17 1/3/17 IGNYTA, STARTRK-didn’t have mutation in ALK, ROS1, NTRK!-3
38.0 Halaven 10/9/17 11/20/17 Mets grew in sternum
39.0 Neratinib 1/28/18 Ongoing 6 Daily oral pills, extreme diarrhea
39.1 Faslodex 1/28/18 Ongoing Benedryl pre-med to prevent hives

 

2 thoughts on “20+ Years of MBC Treatment

  1. x 6/1/2009, IDC, <1cm, Grade 2, ER+/PR+, HER2-
    Hormonal Therapy 6/5/2009 Arimidex (anastrozole)
    Surgery 6/5/2009 Lumpectomy: RightRadiation Therapy 8/1/2009 Whole-breast: BreastHormonal Therapy 11/1/2009 Arimidex (anastrozole)
    Dx 11/1/2013, IDC, 1cm, Stage IA, Grade 2, ER+/PR-, HER2+
    Surgery 1/1/2014 Mastectomy: Right; Prophylactic mastectomy: Left
    Targeted Therapy 2/1/2014 Herceptin (trastuzumab)
    Chemotherapy ,Carboplatin (Paraplatin), Taxotere (docetaxel)
    Dx 10/1/2014, IDC, <1cm, ER+/PR-, HER2-Hormonal Therapy 11/1/2014 Aromasin (exemestane)
    Skin mets Sept 2015
    3/2016, IDC, Right, ER+, HER2-Metastatic treatmentTypeExternalSiteChest wall radiation was finished . Pet scan then revealed left lymph node involvement. (Never had ca on this side always node neg) Her2- estrogen + progesterone-
    Ibrance and fasoldex 2yrs
    It shrunk to nothing markers normal no Ca.
    But now on
    10.10.18 markers up
    Liver mets
    Now what…..? Please help

    • I’m not a doctor however, I’d look into clinical trials. Contessa https://www.contessastudy.com/ comes to mind (looks like you’ve never had Xeloda) but there are others for HER2-, ER+ . You can use this MBC Clinical Trial finder service: https://www.breastcancer.org/treatment/clinical_trials/metastatic-trials-tool I’m looking into immunotherapy trials right now and have an appointment with a clinical trial navagator next week. I want to see if I’d even qualify for such trials so that I can use it as backup when my current treatment stops working. I’m sure your oncologist has something in mind for you. The good thing is that you’ve demonstrated that your tumors respond to treatment. There are a few of us with MBC who never get much response at all. Best of luck to you.

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