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Info Sought: Exceptional responders and Outliers

bestbird
bestbird Member Posts: 232

As some may know, I am an individual member of the Metastatic Breast Cancer Alliance (MBCA) and have elected to be part of their Research Subcommittee.

I've offered to look into a fascinating subject that I believe has been under-studied: namely, Exceptional Responders and Outliers.

For purposes of this study:

Exceptional Responders are people with mbc who have - at one point or another - been on the same medication for three years or more and whose disease remained either stable, decreased, or became NED while on it.

Outliers are patients who have survived mbc for 6 or more years.

If you fit either or both of the above profiles and are willing to share information, please respond by Feb. 24 with answers to the following 7 questions.  Please feel free to use the PM messaging option  if you do not want to share this information online.

1) Whether you're an Exceptional Responder, Outlier, or both
2) Year your mbc was diagnosed

3) Your cancer's ER, PR and HER2 profile
4) List of drugs/treatments (with from and to dates, as best you know them) for each drug taken
 5) Any additional therapies (conventional or otherwise) you may have had or are taking (i.e. acupuncture, specific supplements, etc.)
 6) Whether your tumor(s) had been tested via a chemo sensitivity test or for molecular/genetic profiling, and if so, what specific treatment(s) you took as a result
 7) Your "gut feel" as to why you've done relatively well compared to others

Thank you!

«13

Comments

  • lauriesh
    lauriesh Member Posts: 82
    edited February 2015
    1) I think I am an exceptional responder - on feb, 25, will be Ned for 4 years

    2) 2010
    3) ER/pr-, her2+
    4) taxotere -9/10 - 1/11. herceptin 9/10- present. ( I did add in tykerb for awhile a few years ago and added in perjeta last year)
    5)liver ablation, a ton of supplements over the last 5 years- the ones i took the most are vitamin d, multivitamin, milk thistle, turmeric, iodine, vitamin b complex, Univ of Wash Her2 vaccine trial
    6) no testing
    7) I think the main reason is that I responded really well to treatment and that I have been proactive in finding a dr who would do an ablation and convincing my onc to let me add in tykerb and perjeta.
  • exbrnxgrl
    exbrnxgrl Member Posts: 4,726
    edited February 2015

    Hi Anne,

    I'll respond here since I can easily read the questions.

    1. I am currently an exceptional responder

    2. I was dx'ed in July 2011

    3. I am ER/PR+ and HER2 -, my breast tumor was grade 1, go figure!

    4. Arimidex Nov. 2011- June 2014 stopped due to SE's, not progression. June 2014 to present, Femara. 16 Pamidronate infusions over 24 months ( Dec. 2011-Dec.2013)

    5. Rads x15, to the bone met on my upper femur. I also take D3, melatonin, and have, at times, used curcumin, DIM, calcium,Boswellia and glucosamine/chondroitin .

    6. No chemo sensitivity testing (no chemo), Due to family history and ethnicity, I was BRCA tested but was found to be negative.

    7. This is a tough one! I had a single met, so fit the definition for oligometastases. I made no major lifestyle changes as I felt I lived a relatively healthy life prior to diagnosis and believe in moderation in diet. I had no pain ever and that allowed me to keep working at a job I love and enjoy family and friends. I did not dwell on why I got bc, nor focus obsessively on ways to cure myself. I learned all I could about my bc and found a medical team that regarded me as an intelligent woman and knew that I would have a major say in all tx decisions. I have focused on being happy and enjoying every day of my life (not always sucessful). Really, I think I am just plain lucky.

    Caryn

  • barsco1963
    barsco1963 Member Posts: 879
    edited February 2015

    Thank you for your time and dedication in doing this. A very interesting topic for sure.

    1. Exceptional Responder

    2. Originally diagnosis was mbc in June 2011. Multiple mets to liver

    3. ER+ PR+ HER2-

    4. Started tamoxifen in August 2011 and added Zoladex in September 2011. Still taking tamoxifen. Stopped the zoladex in May 2014 due to oophorectomy. EDITED to add MX in June 2011

    5. No additional therapies although I have started to take D3 (for maybe the last 8 months)

    6. No chemo sensitivity testing. BRCA testing proved positive for BRCA2

    7. Have often pondered this question myself and have no answer other than perhaps luck is on my side. I haven't made any major diet or lifestyle changes (other than quitting work to reduce stress). I did cut out a lot of sugars in the beginning, but currently eat mostly what I want. I still have the very odd alcoholic drink now and then but they are few and far between.

  • JeninMichigan
    JeninMichigan Member Posts: 51
    edited February 2015

    Hi Anne

    I will respond too.

    1. Both

    2. 2008

    3. ER + (weakly at 5%), PR -, HER+++

    4. May-August 2008 Taxotere, Carboplatin, Herceptin, Zometa. Continued Herceptin through current. Jan 2009-dec 2009 Tykerb. Jan 2009- 2012 tamoxifen, 2013 Arimidex for a year, Aredia once annually since 2013

    5. I have seen a naturalist since diagnosis and have taken many different herbal and homeopathic remedies including whole apricot, red clover, graviola. I take a steady diet of supplements daily including turmeric, Vit d! calcium, .coq10, borage oil, b12, melatonin, transfer factor, boswellia, low dose aspirin.

    6. No chemo sensitivity. BRCA negative

    7. I think it is a combination of things and maybe just luck or Gods blessing for now. The combination of medical and natural remedies. The supplements I take keep my body and immune system healthy. Luckily I have rarely gotten sick with even a cold. For the last four years, I have exercised religiously 4 times a week with a combat fitness class to keep my lymphatic system moving. And most importantly I have simplified my life to the extent I can to keep stress at bay. Diet changes I have tried (not super successful) at reducing white sugar and white flour and processed foods. For a year now, I have adopted a vegan diet and cutting out dairy in particular has me feeling pretty darn good.

    Jen

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited February 2015

    1) Whether you're an Exceptional Responder, Outlier, or both

    By your definition, I have been an exceptional responder

    2) Year your mbc was diagnosed

    May 2010

    3) Your cancer's ER, PR and HER2 profile

    < 5% ER and PR +, HER2-

    4) List of drugs/treatments (with from and to dates, as best you know them) for each drug taken

    for Stage II:

    partial mascectomy July 2005

    infusions of dose desne Adramiacyn/Cytoxin (4): September-October 2005

    radiation (November-December 2005) 33 rads plus 8 boosts

    Aromasin: December 2005-November 2011

    Post-Progression:

    Aromasin: May 2010-November 2011 [I am sure this was not effective]

    Faslodex: Single Dose: May 2010-May 2012 [ish]

    Faslodex: Double Dose: May 2012-present

    5) Any additional therapies (conventional or otherwise) you may have had or are taking (i.e. acupuncture, specific supplements, etc.)

    some PT for lower back pain

    6) Whether your tumor(s) had been tested via a chemo sensitivity test or for molecular/genetic profiling, and if so, what specific treatment(s) you took as a result

    Nope, BRCA negative

    7) Your "gut feel" as to why you've done relatively well compared to others

    Just plain lucky that the first treatment tried worked.

    8) It appears that I have now progressed with a few new spots. Period of NED has been 4.5 years. Next scans will see if the tumors have actually figure out how to circumvent the Faslodex.

  • bestbird
    bestbird Member Posts: 232
    edited February 2015

    May thanks to everyone who has responded thus far!  I will try my best to categorize the information and find patterns. If a pattern emerges (for example, if Vitamin D supplementation tends to be a commonality) then this is something I will take back to the MBCA.

     My own response is as follows:

     1) Exceptional Responder
     2) Diagnosed Oct., 2011
     3) ER+/PR+/HER2- No BRCA mutation.
     4) Letrozole (Femara) and Fosamax taken beginning Oct. 2011 through present
     5) In addition to my Medical Oncologist, I work with an Acupuncturist and a Naturopathic Oncologist (NO).  My NO has me on the following regimen (for anyone reading this, please be aware that my supplements are highly customized based upon special blood tests that my NO orders, and these supplements may not be appropriate for others):
     AHCC 1.5 grams
     Alpha Lipoic Acid 600 mg
     Aspirin 81 mg
     Astragalus
     Bone Strength (Calcium 770 mg)
     Calcium 200 mg (Ossapan MD)
     CLA 3,000 mg
     CoQ-10 300 mg
     Glucosamine HCI 1500 mg with Chondroitin Sulfate 1200 mg all in a single capsule
     Green Tea Extract
     Heart Plus (Vit. C + other)
     Honopure Honokiol (3 daily)
     Immune Assist Mushrooms ( 3 capsules 1 week on, 1 week off)
     Iscador/Mistletoe (I took this for one year, then discontinued when my NO recommended that I stop after a year)
     Magnesium 1,000 mg
     Potassium Gluconate
     Primadopholus
     Quercetin (Isoquercetin) Integrative Therapeutics Int'l 200 mg daily
     Reishi
     Resveratrol 750 mg
     Riboflavin 200 mg (Vit. B2)
    Turmeric (I take a heaping 1/4 tsp. of turmeric mixed with freshly ground black pepper and add olive oil. Drink it with Barleans green drink).
     Zinc Picolinate 50 mg
     Crucera-SGS Broccoli extract 50 mg
     Melatonin 20 mg before bed
     Vitamin D3 6,000 IU 5x weekly
     Vitamin K (Full Spectrum by Allergy Research) - 1 capsule 3x weekly

     6) No special testing was done on my tumor
     7) Gut feel: Having a strong drive to help others, which keeps me going. Eliminating sugar and most carbs (except when I want to have fun!) and generally eating a clean diet (including Budwig FOCC), walking 2 miles 6 days weekly. And being very fortunate to have wonderful support!

  • TonyaB
    TonyaB Member Posts: 6
    edited February 2015

    1. Both

    2. 2008

    3. TN

    4. Xeloda 2008- 2010, Clinical trial of Gemzar/Carbo/Iniparib 2010 - Present

    5.No additional therapies

    6. No chemo sensitivity test. BRCA negative

    7. My gut feeling is I am very fortunate. Also, I was proactive in seeking out the trial I am on now. I have a strong faith and support system of family and friends. I would not allow myself to think of leaving my young children and maybe mostly importantly I have a single met. I'm really not sure if it is any or all of these factors. Just a guess really.

  • heidihill
    heidihill Member Posts: 1,856
    edited February 2015


    1) Whether you're an Exceptional Responder, Outlier, or both: Both
    2) Year your mbc was diagnosed: 2007 (oligometastatic)

    3) Your cancer's ER, PR and HER2 Profile: ER+ (100%), PR+ (10%), HER2- 
    4) List of drugs/treatments (with from and to dates, as best you know them) for each drug taken:

    10/2007 Adriamycin, Cytoxan, Taxotere, Zometa (6 cycles)

    2/2008 Mastectomy (Left), axillary lymph node dissection

    4/2008 Intensity-Modulated Radiation Therapy (28x) to axilla, chest wall, clavicle, thoracic spine                   

    2/2008 Femara

    8/2012 Tamoxifen (10mg)

    9/2014 Arimidex 

    5) Any additional therapies (conventional or otherwise) you may have had or are taking (i.e. acupuncture, specific supplements, etc.)
    Vitamin D, Vitamin B, iron, as needed at doctor's office, magnesium as needed for cramps, calcium from foods

    physical therapy for frozen shoulder, prophylactic manual lymph drainage, massage (all short-term)

    daily exercise since 10/2007, high daily intake of fruits and vegetables since 2008 (mediterannean style), curcumin in curries and steambaths for joint pain, weight control, sometimes through intermittent fasting, daily broccoli sprouts for 3 months (one-time)

    occasionally, metformin, baby aspirin, melatonin per doctor's prescription, antihistamine for seasonal allergies and rashes, chamomile tea every night

    prayer, meditation, humor, social support 

    6) Whether your tumor(s) had been tested via a chemo sensitivity test or for molecular/genetic profiling, and if so, what specific treatment(s) you took as a result: tested and shown to be an ultra rapid metabolizer of Tamoxifen

    7) Your "gut feel" as to why you've done relatively well compared to others

    I responded to multi-agent chemo, reaching NED after 5 cycles. It's possible the chemo support meds helped (dexa, antibiotics, neupogen, ponstan). Local control (surgery and radiation) seems to have had benefits for me, too. Looking at my blood work though, one constant I've seen through the years is that I continue to have very low CRP (c-reactive protein, an inflammatory marker). (Higher CRP levels have been associated with a higher risk of breast cancer mortality). I also continue to have low fasting blood glucose and insulin.

    Thank you for doing this project, Bestbird. 

  • Fitztwins
    Fitztwins Member Posts: 144
    edited February 2015

    1) Whether you're an Exceptional Responder, Outlier, or both

    Both

    2) Year your mbc was diagnosed

    June 2008

    3) Your cancer's ER, PR and HER2 profile

    ER+,PR+, HER2+++


    4) List of drugs/treatments (with from and to dates, as best you know them) for each drug taken

    2005 - A/C/T - Herceptin 1 year. 2005-2006 Tamoxifen, 2006-2008 Femara

    2008 - Taxotere/Herceptin/Aromasin

    2010 - 3 months of TDM1/Taxol

    2010-2014 Almost 4 full years Herceptin/Tykerb/ switching out hormonal s.

    2015 - Taxol/Herceptin/Prejeta currently

    5) Any additional therapies (conventional or otherwise) you may have had or are taking (i.e. acupuncture, specific supplements, etc.)

    red wine.


    6) Whether your tumor(s) had been tested via a chemo sensitivity test or for molecular/genetic profiling, and if so, what specific treatment(s) you took as a result

    None.


    7) Your "gut feel" as to why you've done relatively well compared to others

    Lucky, HER2+? getting herceptin? trying tdm1? tolerating tykerb...I think that the tempo of my cancer is slow growing..

  • bestbird
    bestbird Member Posts: 232
    edited February 2015

    Fitz, raising a glass of red wine to you!

  • carpe_diem
    carpe_diem Member Posts: 599
    edited February 2015

    1. Exceptional Responder: 45 months on Arimidex

    2. Dx 3/2011, but pleural effusions in July 2010 were later shown to be from pleural mets. BC never showed up on mammograms.

    3. ER+, PR+, HER2 equivocal, neg. on FISH. My recent progression to bone (12/2014) is PR-.

    4. Arimidex 3/11 to 12/14, Mastectomy 11/2012, radiation 2/2013, Faslodex 12/2014 to present, Zometa 1/2015 to present

    5. Ca+Vit D supplement (started before bc), tried curcumin for about a year, recently started lysine and B12 since my diet is getting closer to vegan. I dropped dairy, red meat, and processed foods in May 2011 and joined an exercise group at my cancer center in Fort Worth. Since moving to NY, I've continued exercising and walking regularly, and joined the local YMCA for water aerobics and yoga since it's hard to get out with the snow and frigid temperatures. I tried acupuncture and seem to be a non-responder. Massage is nice, but I thought the foot manipulation and Reiki were just silly and useless. My reading of the literature supports diet and exercise, but most of the rest are "robust placebo effect" at best. Considering that recent tests in NY showed 80% of the supplements tested did not contain the active ingredient listed, I'll stick with ethical pharmaceuticals and clean living.

    6. I had two previous cancers (endometrial and bladder (twice)) and my sister had three, so I was referred early on for testing. We were in our 50's when cancers started, so didn't qualify for BRCA testing, but PTEN and P53 were negative. I recently had FoundationOne testing on my solitary bone met to the right scapula, and it showed three genomic variations: FGFR1 amplification, SMAD4 loss, and ZNF703 amplification. Only the first has approved therapies or clinical trials, but not for bc. The last one has a note "Amplification of ZNF703 has been observed in luminal B breast tumors, a subtype associated with aggressive disease progression and poor outcomes." Go figure.

    7. I'll go with luck. I think my changes in diet and exercise may have helped, particularly in reducing side effects. I've had only some minor nausea on Arimidex, and some aches after the first Faslodex shots. All of my tumors and metastases tested as predominately mucinous, a rare type of IDC that is hard to spot on mammograms, but rarely metastasizes. I've asked my mo's (five at this point) if that might explain why my cancer has been less aggressive, but no one seems to know. My original biopsy was grade 2 with high KI-67 (25%), so I wash't expecting to be around this long, let alone feeling this well. The bone met (singular) has me worried, but here's hoping I'll be an "Exceptional Responder" to Faslodex, too, with "Outlier" in my future.

  • Kandy
    Kandy Member Posts: 424
    edited February 2015

    I don't qualify, but thank you Bestbird for starting this topic and researching it. It will be interesting to see if there is things in common. I have already found it most interesting to read and I hope to get some tips from the awesome ladies that are willing to share their secrets. I love the tip for wine, I will definitely use that one.Maybe one day I can join in this lucky group. Thanks again to all of you that choose to participate.

  • KSkier
    KSkier Member Posts: 16
    edited February 2015

    1) Whether you're an Exceptional Responder, Outlier, or both

    Both: St. Patty's day will mark the anniversary of seven years since I noticed something was wrong with my breast. I have been on the same medication since August of 2011

    2) Year your mbc was diagnosed: 2008

    3) Your cancer's ER, PR and HER2 profile: triple negative


    4) List of drugs/treatments (with from and to dates, as best you know them) for each drug taken:

    Sept 2008 - Dec 2008 Adriamycin 4 bi-weekly cycles, Taxol 4 biweekly cycles

    Dec 2008: Bilateral Mx

    Jan 2009 - Mar 2009: Radiation daily x 25

    July 2009 - April 2011: Cisplatin every 4 weeks

    July 2011 - present Sapacitabine Seleciclib every 3 weeks


    5) Any additional therapies (conventional or otherwise) you may have had or are taking (i.e. acupuncture, specific supplements, etc.)

    Exercise, work, friends, wine, sleep, food...living life as much as I can as if I don't have cancer.

    6) Whether your tumor(s) had been tested via a chemo sensitivity test or for molecular/genetic profiling, and if so, what specific treatment(s) you took as a result: I believe that a slight mutation made me eligible for my current trial


    7) Your "gut feel" as to why you've done relatively well compared to others: Otherwise good health/strength/fitness. Luck? Denial?

    Mostly I think it is the fact that I fell into the hands of highly dedicated researchers at just the right time for there to be a trial open for which I qualify. So That is luck: being in the right place at the right time, and benefiting from the work that they do for which I am grateful.

  • bestbird
    bestbird Member Posts: 232
    edited February 2015

    carpe-diem, Thank you for your reply!  For FGFR1, there's a great-looking Lucitanib Trial (my friend is on it and doing well).  My MBC document notes about the drug are provided below, along with verbiage about mucinous bc (about which I'd never known until I researched for my document!).

    o 
    Lucitanib by Clovis Technology, Inc.: A new drug called Lucitanib appears highly promising in treating MBC patients with FGFR1 and/or 11q amplifications.  Lucitanib is unique among tyrosine kinase inhibitors being developed for cancer therapy in effectively targeting fibroblast growth factor receptors (FGFR) 1-2, vascular endothelial growth factor receptors (VEGFR) 1-3, and platelet-derived growth factor (PDGF) receptors alpha and beta. This selectivity profile allows Lucitanib to provide a potential benefit to cancer patients by targeting multiple pathways of tumor development. In an early study, a 50% response rate was observed in heavily pre-treated breast cancer patients (median 6 lines of prior therapy).  A Phase II study of Lucitanib is underway as of January 2015. From:http://www.google.com/url?sa=t&amp;rct=j&amp;q=&amp;esrc=s&amp;source=web&amp;cd=8&amp;ved=0CFsQFjAH&amp;url=http://phx.corporate-ir.net/External.File?t=1&item=VHlwZT0yfFBhcmVudElEPTUwNjI2NjV8Q2hpbGRJRD01MjYxNjA=&amp;ei=CwvAVMLbGcyvggSKq4P4Dw&amp;usg=AFQjCNFNwSqYRMb_4_pCz_v4wKQSfKw1sg&amp;sig2=S3RFt3t8qH-dyMNCKJE47A and http://www.businesswire.com/news/home/20140910006234/en/Clovis-Oncology-Announces-Patient-Enrolled-Lucitanib-Phase#.VMAOm0YtFdh

    §  Mucinous Carcinoma of the Breast — sometimes called “colloid” carcinoma — is a rare form of invasive ductal carcinoma.  In this cancer, the tumor is made up of abnormal cells that “float” in pools of mucin, a key ingredient in the slippery substance known as mucus.  In mucinous carcinoma, the mucin becomes part of the tumor and surrounds the breast cancer cells. Under a microscope, it looks like the cancer cells are scattered throughout pools of mucus.  Only about 2-3% of invasive breast cancers
    are “pure” mucinous carcinomas; about 5% of invasive breast cancers appear to have a mucinous component within them, along with other types of cancer cells present. Overall, it is a less aggressive type that responds well to treatment.

  • carpe_diem
    carpe_diem Member Posts: 599
    edited February 2015

    Thanks a bunch, Bestbird. The clinical trial certainly looks promising. My concern is that I'm apparently doing well on my current treatment, and I get the impression that lucitanib may have more side effects. Still, there's a site about four hours away, so I'll check it out.

    One of the problems with mucinous bc is that it often looks like normal breast tissue in mammograms and sonograms, leading to later dx. It's clear that it's a "good" cancer to have in early stages, but I've found very little info about it in the metastatic setting, and that wasn't very encouraging.

  • bestbird
    bestbird Member Posts: 232
    edited February 2015

    Wow - there have been 19 responses so far (on 2 mbc forums) and the "big hitter" thus far is that 53% of the Exceptional Responders and Outliers are taking Vitamin D.  Will keep you posted!

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited February 2015

    Best, I take the Vitamin D during the winter months... but am not religious about it.

  • iwillwinthisbattle
    iwillwinthisbattle Member Posts: 42
    edited February 2015

    I'm so excited that I can say I am 3 years out!!

    Stage IV IDC 4/2011. (2 small mets to back, 2 small mets to liver) ER/PR+, HER-, BRCA-. 6 doses of A/C-done-8//2011. 2/20/12---NED!!!!

    Treated at CTCA (holistic approach) so I have been taking calcium/Vit D, Mitake, CoQ10 and a few other supplements as well as Arimidex. No Mx, but I did have an ooph. No rads.

    Why me? I agree with the others. Absolutely, incredibly good luck, great team approach from CTCA, and I do believe in my absolute conviction that I had to be there to raise my two (adopted) kids. I am now divorced (and realistically felt it coming on for awhile) and I did not want my ex raising "my" kids.


  • steelrose
    steelrose Member Posts: 318
    edited February 2015

    I'm so happy that there are so many of us!

    1) I meet the "Exceptional Responder" criteria. NED for three and a half years on Arimidex.

    2) Diagnosed Jan. 2010.

    3) I am ER+ PR+ HER-

    4) Drugs: Tamoxifen (Jan. 2010-June 2010), Avastin and Xeloda (June 2010-October 2010), Arimidex (November 2010-Present), Faslodex (October 2014-Present) , Zometa, Xgeva (current). Treatments: Radiation to spine and sternum (Feb. 2010), Radiation to breast (skin mets recurrence, Feb. 2014). Also had lumpectomy (Nov. 2010), oophorectomy (Nov. 2010), liver ablation (Dec. 2010).

    5) Additional: Vitamin D, Iron, Calcium, Magnesium. Regular exercise, Yoga, currently doing Healing Touch for nerve pain. And I'm another red wine lover!

    6) None.

    7) Dumb luck!

  • respin
    respin Member Posts: 1
    edited February 2015

    1) By your definition, an outlier.

    2) Jan. 2009, liver/lung mets.

    3) ER, PR, HER2 +

    4) Femara/Herceptin 2/09-8/09
    Xeloda/Tykerb (trial) 8/09-2/10
    Aromasin/Herceptin 2/10-12/10
    Gemzar/Herceptin 12/10-6/11
    Falsadex/Herceptin 6/11-10/11
    Torisel/Neratinib (trial) 10/11-12/11
    Navelbine/Herceptin 1/12-6/12
    Tamoxifen/Herceptin (chemo break) 6/12-10/12
    Navelbine/Herceptin 10/12-8/13
    added Perjeta 11/12-6/13
    Abraxane/Herceptin 8/13-2/14
    TDM1 3/14-6/14
    Adriamycin 6/14-present (probably starting Halaven 3/15)


    5) Tried acupuncture a few treatments ago for nausea and insomnia - can't say it worked for either issue. No supplements. I'll take Vit D if I'm testing low. Just live life as normal as I can.

    6) BRCA1+, scheduled for second round of IMPACT testing next week.
    (First round, 8 genes - no mutations.)

    7) Fully trust my onc; we have a good relationship. As you can see from my treatment, I've never been stable for more than a few months (and never NED.) I'm sure there's a reason why my mets grow, shrink, grow some more, and spread - but don't seem to cause other issues (outside of a blood clot years ago and one ANC/infection isolation stay this past year.) I've never had effusions. Dumb luck?


  • Jejik
    Jejik Member Posts: 26
    edited February 2015

    1. Exceptional responder

    2. 2010

    3. HER2 positive, Er and PR negative

    4. TCH November 2010 to May? 2011, herceptin only from May 2011 to present, with an 8 month break from February-August 2012 due to unexpected pregnancy. I also had 2 lumpectomies and my lymph nodes removed in 2010. Did 30ish rounds of radiation summer 2011.

    5. No additional treatments or therapies

    6. No chemo sensitivity tests that i know of, negative for BRCA genes

    7. I really don't know. I achieved NED on TCH and have been that way ever since. The tumors in my liver were very small. I assume the herceptin is the reason, but that doesn't explain why I didn't recur when I was off it while I was pregnant. Maybe my pregnancy protected me? I just feel very blessed and hope that I can

    keep my NED status forever. It's a long shot, but so was giving birth to a healthy baby with no cancer recurrence.

  • DC197
    DC197 Member Posts: 58
    edited February 2015

    Here is my summary:

    1) Exceptional Responder

    2) Diagnosed with mbc Dec. 2010

    3) ER+/PR+/HER2- (no BRCA testing)

    4) Partial Mastectomy and axillary node dissection

    33 Radiation treatments to breast, axilla, and T12 spine beginning Jan 2011

    anastrozole (1mg) and Zometa (4 mg infusion) beginning Jan 2011 to present

    5) PT for lymphedema, multi-vitamin, Calcium+D3 (1200 mg/1600 IU), additional D3 (2000 IU)

    6) No sensitivity testing on tumor

    7) At this point in my life (turning 68 in June) I am pretty much stress-free. My children are raised,

    I have a good support system, a good team of doctors, and the grace of God. Most of my family,

    with only a few exceptions, haven't lived past 70, so I've always been realistic in thinking that I

    probably wouldn't have a long life.

    ~~Diane


  • tina2
    tina2 Member Posts: 757
    edited February 2015

    1) Whether you're an Exceptional Responder, Outlier, or both

    Exceptional Responder: Treated with Faslodex for three and one-half years

    2) Year your mbc was diagnosed

    2011

    3) Your cancer's ER, PR and HER2 profile

    ER+/PR+

    No HER2 testing

    BRCA negative

    4) List of drugs/treatments (with from and to dates, as best you know them) for each drug taken

    Only Faslodex

    5) Any additional therapies (conventional or otherwise) you may have had or are taking (i.e. acupuncture, specific supplements, etc.)

    Daily Supplements:

    Four Citrical Petites (inc. Vit. D)

    Super B Complex

    Aspirin 81 mg

    Vitamin C 1000 mg

    Senior Multivitamin

    6) Whether your tumor(s) had been tested via a chemo sensitivity test or for molecular/genetic profiling, and if so, what specific treatment(s) you took as a result

    No chemo sensitivity test or molecular profiling

    7) Your "gut feel" as to why you've done relatively well compared to others

    I believe my cancer is the indolent sort. I might actually be called an Outlier because I had documented lung nodules for years before they started growing and glowing on scans. However, even dubbing myself an Exceptional Responder makes me feel I might be jinxing myself and tempting Fate!

    Tina

  • bestbird
    bestbird Member Posts: 232
    edited February 2015

    Tina2, our stories are nearly identical.  I too had a lung nodule on a CT scan years prior to my official mbc diagnosis in the same year as you. 

    All - thank you for your responses - 37 thus far from 2 mbc forums plus FB!  Definitely beginning to see patterns (how's that for a teaser?) More to come when complete after Feb. 24.


     

  • sandilee
    sandilee Member Posts: 436
    edited February 2015

    Exceptional Responder

    Diagnosed MBC June 2011. (Original Stage 1 Grade 3 BC diagnosed 11/07)

    ER+, PR-, HER2- No Brac test

    Since MBC diagnosis 2011, I had T3 radiation, and have been treated and kept stable with Faslodex and Xgeva.

    Other therapies:

    Calcium 800, Vitamin D3 5000, Aspirin 81mg, magnesium, melatonin. No special diet or forbidden foods.

    No tests for tumor characteristics or sensitivities (yet!)

    My gut reason for my favorable response?

    I have no idea. I wake up every day thinking I am very lucky and very grateful.


  • divinemrsm
    divinemrsm Member Posts: 5,993
    edited February 2015

    I have a lot to say on this matter, hope you don't mind. First, one day I'd like to see mbc survivors of 6+ years be the norm and not outliers. For now, I hope I become one of those outliers.

    1. I'm an Exceptional Responder. (Something about the descriptive profile makes me feel pretty good).
    2. I discovered a lump in my left breast in December 2010; diagnosed with mbc early 2011.
    3. er+ pr+ her2-, metastases to bone: hip, rib, scapula
    4. Treatments began with neoadjuvant chemotherapy:
    * taxotere & cytoxan with zometa from 2/2011 to 6/2011
    * lumpectomy and subsequent re-excision for clear margins 7/2011
    * 33 rounds of radiation from August to October 2011
    * Generic Arimidex, anastrozole, daily, started November 2011; stable (3+ years) since that time, even a slight bit of regression. Also, zometa every month for almost three years now once very three months.
    5. My own research led me to take these supplements daily, and yes, there's Vitamin D, taken every other day:

    image
    Here's a Mrs. M theory: When we got whole house air conditioning about 10 years ago, I spent more time inside and less in the sun. Could that have depleted my Vitamin D and be a contributing factor in getting bc? Because my Vitamin D was low prior to getting bc. Has the convenience of whole house air created such a shift in the way we live that we pay for the convenience in other ways?

    6. I was not tested for molecular/genetic profiling.
    7. My gut says there may be several reasons I'm responding to treatment.
    * The bc I'm dealing with must somehow be less aggressive, as Tina says, "indolent". I think being in my 50s at diagnosis, everything about my body operates slower than when I was younger, making the bc sluggish as well, if that makes sense.
    * I was fortunate to have good health all my life until the bc diagnosis; I think it helped.
    * I believe the median mcb survival statistics are comprised of *all* women including those with poor, compromised health before bc, as well as those who do not use conventional medicine to treat their cancer along with those who do not take their meds consistently. I make sure to take the Anastrozole every day, no skipping.
    * Mainly, tho, my gut tells me it is something in my DNA that allows my body to respond to treatment. In the 1970's, my 18 year old brother was diagnosed with testicular cancer that had spread. He had chemo, rads, & surgery and given a year to live. He celebrates his 53rd birthday today, Feb 22! He was cured with never a recurrence. A cousin of mine was diagnosed with ovarian cancer, "the kind," she told me with a gentle smile, "you know, that kills you". That was well over 10 years ago and she responded to treatment. My maternal grandfather lived to 95, my paternal grandmother lived to 102. There's some longevity I've inherited, possibly the ability to take some heavy hits and, tho wounded, continue on.

  • JeninMichigan
    JeninMichigan Member Posts: 51
    edited February 2015

    DivineMrs. I love your thought process. I was thinking today about the vitamin D issue. I test low and have since taken 4800 iu daily. I wonder with all the higher spf sunscreen if this contributes to blocking out Vitamin D. However,for most of my life I have been a sun worshipper so I am not sure this is really the case with me. I also have a brother who was very sick diagnosed with Leukemia ALL at the age of 16 years old. At one point he spent two weeks on a ventilator with two collapsed lungs and zero immunity. He overcame, stayed in remission and today is 45 years old with two sons. I really thought it would not be possible for my mom to have two children overcome advanced cancer diagnosis. Today it is 7 years for me and I have been NED for 6 1/2 of these years.

    Jen

  • GatorGal
    GatorGal Member Posts: 750
    edited February 2015



    1) Outlier - 6 years and counting!
    2) June 2008

    3) ER+ PR+ HER2-
    4) List of drugs/treatments:

    The first few years tried AI's - Femara, arimidex, tamoxifen

    Xeloda (4 rounds)

    Fulvestrant (a few months)

    Taxotere (docetaxel) from 4/11/2011 to 8/1/2011

    Gemzar from 8/14/11 to

    Doxil June 13, 2012 to November 2012

    Taxol Dec. 12, 2012 to September 2013

    CMF Sept. 11, 2013 to April 2014

    Carboplatin from April 16, 2014 - November 2014

    Abraxane Dec. 17, 2014 - present

    5) Other: Claritin daily for allergies, a glass or two of red wine every night except during chemo week, green smoothies for breakfast 3-4 times a week

    6) No chemo sensitivity test or molecular/genetic profiling that I know of

    7) I've asked myself this question many times. I totally trust my oncologist and generally follow his advice but not without doing my own follow-up research. I have tolerated chemotherapy pretty well but haven't had a long run on anything. I believe in my heart that there is some unfulfilled purpose to my life and that God isn't through with me yet.


    • kayfh
      kayfh Member Posts: 79
      edited February 2015

      1. I will be an outlier in 3 weeks.

      2. March 2009

      3. Er + Pr - HER ++

      3. 05/09 to 09/09 docetaxol and herceptin q 3 weeks

      09/09 to 06/10 herceptin q3weeks, letrozole daily

      06/10 to present herceptin q3weeks. I am currently on a drug holiday of six weeks and it's the best vacation I have taken in years. Will return to herceptin in 03/15.

      4. 04/09 Left mastectomy

      5. Yoga. Since my dx no more cheap red wine, SillyHeart, only the best for me!

      6. Unknown

      7. At first, around 3 years out I began to seriously think that "they" had made a mistake. Then I looked at oligomets. Then I learned to accept that there will always be exceptional responders and outliers and there was no reason why I couldn't be one of them. After all, by getting breast cancer I was demonstrating just how "special" I am. Happy

    • dlb823
      dlb823 Member Posts: 2,701
      edited February 2015

      Bumping because this is the motivating thread on BCO! Thank you, Anne, for working on this project and for sharing your observations! It gives so much hope to those of us who aren't at this point yet! Deanna