Info Sought: Exceptional responders and Outliers
Comments
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Anne,
What an interesting thread.
Here’s my info:1. Both
2. Jan 2009, mets to
lungs & bones3. ER+ PR+ HER2-
4. 2009-Mar 2010: weekly Taxol, bi-weekly Avastin, monthly
ArediaApr 2010-Sept 2014: daily Tamoxifen, monthly Aredia
Oct 2014-present: daily Tamoxifen,
Zometa every 3 months5. No additional therapies;
no supplements6. No chemo testing; BRCA
negative7. No special reason,
I’m just very lucky. I’m pretty sure I’m in the “luminal A” sub-type and for
some reason my body has responded very well to treatments that have been around
for a long time.It’s so great to see so many ladies able to post here, and how
different the regimens are! Thanks for asking us to share.0 -
1. Exceptional Responder
2. Originally diagnosis was mbc in Sept 2011. Multiple mets to spine.
3. triple negative
4. Started Xgeva in 2011 and continue until today. Abraxane for 3 cycles in 2011, then Abraxane for 5 cycles in 2014. Both times took me to NED.
5. Vit D 4000 units daily. Presently my vit d level is low 40's which is the highest it has been.
6. No chemo sensitivity testing. BRCA negative
7.Absolutely no idea. Just luck.
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1) Whether you're an Exceptional Responder, Outlier, or both - I'm both2) Year your mbc was diagnosed - 2008
3) Your cancer's ER, PR and HER2 profile - I don't know
4) List of drugs/treatments (with from and to dates, as best you know them) for each drug taken - since 2008 Herceptin, Zometa, arimidex - radiation for 2 weeks in 2008
5) Any additional therapies (conventional or otherwise) you may have had or are taking (i.e. acupuncture, specific supplements, etc.) - I'm on a lot of preventative meds like levothyroxine, metformin, losartan, hydrochlorothiazide, and others. I am also taking Percocet for pain, Ativan for stress, different prescription drugs for anxiety (my psychiatrist and I are trying to figure out which one works.
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 don't think so.
7) Your "gut feel" as to why you've done relatively well compared to others. I'm almost 73 and before BC I used to watch everything I ate - vegetables - no carbohydrates, etc.. I exercised and swam a lot. I've had a hard time losing weight and I never ate sweets. I NEVER took prescription medication until 2007. I have and still do take high potency multi vitamins and I supplements and I've added more of some vitamins and minerals. Since my diagnosis, I eat whatever the heck I feel like including sweets, I'm on scads of medications. It's hard to watch my weight, because nothing ever worked in the last 20 years, but I've weighed the same for 5 years now.(1) My gut feeling is that I'm not worried about dying. All my affairs are in order. I still work so that I can afford to travel once in a while and I don't think so hard about whether or not I can afford a simple pleasure..
(2) My second gut feeling, which I discovered recently, is that I found my purpose for living this long. I now know the reason that I didn't die over 6 years ago. I'm helping to guide someone through their path. that's all I'll say for now.
Hope this helps. If you have any further questions, let me know.
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amontro,
Since you are on herceptin and Arimidex, wouldn't that make you ER and HER2 positive
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1) Exceptional responder (in March)
2) Feb 2012 - stage 2, March 2012 - stage 4 extensive bone mets regressed to only one active met currently
3) ER+/PR+ 100% HER-
4) Tamoxifen since Mar 2012, xgeva/zometa (switched a year ago) started at every 4 wks, now every 10 wks, Lupron for the first year then had oophrectomy
5) Vit D, calcium, vit B12, aspirin
6) No special testing
7) Tumor was grade 1, healthy except for bc, grace of God
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Hi, exbrnxgrl! What does that make me (lol)? I've always enjoyed your posts because they are so informative, and I appreciate your letting me know that I'm off the markI guess my post was a little foolish. I have no clue about ER and HER. Head in the sand?
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I would think that the Vito D percentage might be similar for people that don't fall in either categories.I am one of those people and it doesn't look like I will fall in any of the categories but I take Vito D every day.
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Mary_123, you raise an excellent point! To do a proper job of analyzing everything scientifically, one would need a "control arm" to compare Vit. D intake and other possible therapies/supplements. In fact, this has already been done in a large bc study (below). I'm trying to assess several possible factors, other than tissue itself. Plus the comments themselves are very illuminating!
Vitamin D, 25-Hydroxy: New research suggests that breast cancer patients with high levels of Vitamin D in their blood are twice as likely to survive the disease as patients with low levels. The study included a total of 4,443 patients with breast cancer, all of whom were followed for an average of 9 years. Patients were divided into groups dependent on the levels of 25-hydroxyvitamin D in their blood. Women in the "high" group had an average of 30 nanograms per milliliter (ng/ml) of 25-hydroxyvitamin D in their blood, while women in the "low" group had an average of 17 ng/ml in their blood.
The team found that women who had high levels of 25-hydroxyvitamin D in their blood had a 50% lower fatality rate, compared with women who had low levels of 25-hydroxyvitamin D in their blood. The theory behind Vitamin D’s success against breast cancer is that Vitamin D metabolites increase communication between cells by activating a protein that halts aggressive cell
division. As long as vitamin D receptors are present, tumor growth is prevented and kept from expanding its blood supply.
And the good news is that Vitamin D receptors are not lost until a tumor
is very advanced. From: http://www.medicalnewstoday.com/articles/273728.phpResearchers found that about three-quarters of estrogen-dependent tumors and two-thirds of estrogen-independent tumors expressed hormone receptors for vitamin D and testosterone (androgen). They revealed that treatment of breast cancer cells with hormones that activate vitamin D and testosterone receptors reduced the growth of cancer cells. In addition, these hormones increased the efficacy of standard chemotherapy. From:http://med.miami.edu/news/researchers-discover-new-hormone-receptors-to-target-when-treating-breast-c
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1) Whether you're an Exceptional Responder, Outlier, or both
Exceptional Responder - "Almost" according to the criteria
2) Year your mbc was diagnosed
July 2010 - coming up on 5 years
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 takenACT
Bilateral masectomy
Radiation to Chest Wall - 6 weeks
Radiation to 2 spine mets when first diagnosed
Started on Tamoxifen - 2 1/2 years
Herceptin - Since the start and still on it
Zometa - Switched to Xgeva after 2 1/2 years
Ovaries removed
Progression 2 years after diagnosis in femur and then 6 months later to hip bone - both spots radiated. At that time I changed to Arimedex and Faslodex. It has been "close" to three years of being NED.
Breast cancer vaccine with Dr. Emens at Johns Hopkins
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 resultmetformin - I am insulin resistant
magnesium
curcummin
vitamin D
B6
COQ10
Fish Oil
I see a nutritionist and this list (besides the metformin) can change.
7) Your "gut feel" as to why you've done relatively well compared to othersI believe God still wants me here on this earth. I have so many people that pray for me. I also think my cancer was caught early in the stage IV sense. My doctor has treated me aggressively with curative intent.
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Hi Bestbird,I had extensive mets at diagnosis, including, supraclavicle, axilla, hilar, mediastinal and pelvic nodes, lungs, biliary tract, spleen, pancreas, muscles, spine.
Here are my responses:
1) Outlier, almost exceptional responder
2) 2009
3) Triple negative
4) Gemzar/xeloda 6/2009-01/2010; Caelyx 01/2010-04/2010; Taxol 04/2010-09/2011, Navelbine 09/2011-02/2014, NED and off treatment 02/2014 to present
5) Acupuncture, turmeric, vitamin D, fish oil
6) No, except BRCA
7) Minimal SE's meant that I was able to have a very active lifestyle, eat very well, exercise extensively. I think it may have helped....
Lotusblossom
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I love this thread!!
I am 2 years into my Stage 4 dx, so not an outlier yet. But I feel very lucky to be living well with minimal SEs. I so enjoy hearing all of these stories!
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this is awesome!
Bestbird - did you ever “reveal” the stats from this?
Hoping to find out!!
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Thanks Leda for bringing this thread to the front. Would be curious to know how many of the responders are still alive. Also, would love to know who on the boards now fit the Outlier and Exceptional Responder categories.
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Me.
Still here.
8+ years & stable.
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hi
I was diagnosed in 2013 at the age of 43 denova with multiple bone mets. It’s been 5 1/2 years and I’ve only taken tamoxifen and as of yesterday my Pet scan shows no hot spots. My cancer is heavily Er+ Pr+. I take a multi vitamin,work out daily and get an chevalier shot every 4 months. I also drink alcohol on occasion enjoy a Pepsi(every day) and eat what I want in moderation. Hope Thisbe helps.
Kristin
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1. Both
2. 2011 de novo (age 47)
3. ER+ PR+ HER2 nue/neg
4. After initial treatment of taxotere/cytoxine I was 3.5 years NED on faslodex and exemestane. Since then, until recently, I have been oligo with limited bone Mets. I have also been on Ibrance w/letrozole, Xeloda and Xgeva, Afinitor w/faslodex and I am currently on Doxil only, after some liver Mets were found.
5. No
6. Caris and Foundation One. No mutations. Nothing that can be used for specific treatment.
7. LUCK. Also, I was in fantastic physical shape and health when this started. And I have a pretty aggressive MO. But mostly....LUCK.
A Beautiful Sunset
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Still here and doing well 9 years after Stage 4 diagnosis.
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7+ years and I’m still alive and kicking
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Doing well 11+ years after diagnosis (de novo). Still taking Vitamin D in the winter months.
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It's been seven-plus years since I was diagnosed with lung mets. (See signature for history.) At the moment I'm doing so well that I'm on a short treatment hiatus. Cross fingers and knock wood!
Tina
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Heidihill, are you still just on Tamoxifen?
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Outlier, since it's been 6 1/2 years from diagnosis of liver and bone metastases. I am not an exceptional responder, however. Many failed treatments, but had 20+months on Doxil.
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This is an old post from 2015. Here are the results of the original survey: https://community.breastcancer.org/forum/8/topics/828854?page=1#post_4321608
Feb 24, 2015 08:24PM Bestbird wrote:
Due to formatting issues, this has been re-posted.
First, a big "Thank You" to everyone who replied to the Exceptional Responder/Outliers survey! Altogether there were 50 responses across 2 mbc forums and 1 Facebook group. To provide an idea of the magnitude of the responses, many Phase I and Phase II clinical trials have been conducted with far fewer people!
1. Responder Classification:
a) 22 (44%) are Exceptional Responders
b) 6 (12%) are Outliers
c) 22 (44%) are both Exceptional Responders and Outliers
2. Cancer Profile:
a) 45 (90%) of participants were ER+
b) 33 (66%) of participants were PR+
c) 13 (26%) were HER2+ and one person wasn't sure of her HER2 status. (I expect the number of HER2 positive folks who become Exceptional Responders/Outliers to quickly increase due to adding Perjeta and a Taxane to Herceptin, which has been shown to substantially extend Overall Survival).
d) 4 people (8%) were TNBC! 1 was an Exceptional Responder, 1 was an Outlier, and two were both Exceptional Responders and Outliers.
e) Although the question was not asked, 13 people provided their BRCA status, which was negative for 10 people and positive for 3 people.
f) 3 (6%) people mentioned being Oligometastatic, although this question had not been asked. 1 of these people was an Exceptional Responder, and 2 were both Exceptional Responders and Outliers.
g) Of those people who provided the location of their mets, bone, lung and liver were mentioned.
3. Applause!
The earliest date of diagnosis was 1999. (This individual is both an Outlier and an Exceptional Responder who is ER+, originally HER2+, and then became HER2-).
4. Number of Years Post-MBC Diagnosis:
a) The average number of years post-mbc diagnosis among the entire set of responders was 6.2
b) Among Exceptional Responders, the average was 4.0 years
c) Among Outliers, the average was 7.3 years
d) Among those who are both Exceptional Responders and Outliers, the average was 8.0 years
5. Number of Exceptional Responders by Medication (in several instances, some of the drugs below were combined):
a) Faslodex: 12 Exceptional Responders took this medication for three or more years
b) Arimidex: 11
c) Herceptin: 9
d) Letrozole: 8
e) Zometa: 7
f) Xgeva: 5
g) Tamoxifen: 3
h) Aromasin: 2
i) Xeloda: 2
j) Clinical Trial: 2
k) Aredia: 1
6. Supplement/Activity with Number of People. (For example, 29 [a whopping 58% of] people who took the survey also take Vitamin D supplements).
SUPPLEMENT/ACTIVITY NR. %
VIT. D 29 58%
CALCIUM 18 36%
TURMERIC/CURCUMIN 14 28%
VIT. B (various) 14 28%
DIET 14 28%
EXERCISE 14 28%
MELATONIN 13 26%
MAGNESIUM 10 20%
ACUPUNCTURE 7 14%
ASPIRIN 7 14%
YOGA 7 14%
COQ-10 6 12%
ZINC 6 12%
OMEGA-3 / FISH OIL 5 10%
SPIRITUAL/ PRAYER 5 10%
GREEN TEA 4 8%
MULTI VITAMIN 4 8%
BOSWELLIA 3 6%
CRUCERA/ BROCCOLI 3 6%
HERBS 3 6%
METFORMIN 3 6%
MUSHROOM 3 6%
REIKI/HEALING TOUCH 3 6%
MOLECULAR TESTING 3 6%
NATUROPATH 3 6%
VIT. C 3 6%
ASTRAGALUS 2 4%
DIM 2 4%
GLUCOSAMINE CHONDROITIN 2 4%
IRON 2 4%
MILK THISTLE 2 4%
PROBIOTICS 2 4%
SPIRULINA 2 4%
COPPER CHELATION 2 4%
VIT. K 2 4%
HUMOR 2 4%
MASSAGE 2 4%
MEDITATION 2 4%
CHEMO TESTING ASSAY 1 2%
7. Luck: 17 people mentioned being "lucky" regarding why they have fared relatively well. Over time, as genetic and other testing become more sophisticated, we may have more solid facts about why some tumors (and people) respond better to therapy.
8. Raise a Glass! Seven (14%) of responders offhandedly mentioned that they enjoy drinking red wine (there were no vocal advocates for white wine!). Although alcohol in general remains somewhat controversial relative to breast cancer, red wine is high in resveratrol which may be helpful against bc.
Thank you again to all who responded!0 -
Gotta say ladies. I’m hoping to be both one day - this post had given me hope. .
I’m 31 and dx de novo which is frustrating. After 4 cycles of FEC I was nearly NED with one little auxiliary node still lighting up. Liver met not lighting up at all. Here’s to hoping after my last two cycles that everything is gone. My Onc was so surprised she called me an exceptional case and now the team wants to treat me with curative intent.
Keep your fingers crossed for me !
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BAP That's fantastic! Two more doses for the KO!
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this was awesome to read!! And congrats BAP!!!!
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Thank you Best Bird!
We should acknowledge that since this was 4 years ago, and many of these women are still here, then those averages should be up by now. Thatsa good thing worth mentioning.
I was in a rut this past week. This thread TOTALLY made me feel better. Thanks again.
Sunset
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Thank you Bestbird. If you ever repeat the study, I would like to see the impact of the new CK targeted therapies. I guess we have to wait a a few more years to see effects of those 3 drugs Ibrance, Kisqali and Verzenio.
I appreciate your response to an old thread. Wonder how the women/men are doing today from 2015..
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Hi All,
Interestingly, the University of Wisconsin has launched a study looking at outliers but their definition is based on when we were originally diagnosed (if I understand correctly, they are basing this on the fact that it is difficult to know when, precisely, our metastasis started to grow). They’re recruiting for the study now which involves a survey if you screen in (which I’m pretty sure we all would) and then a small number of longterm survivors will have genetic testing.
I’m intrigued as I will be two decades in another year. Interesting way to look at things.
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Sadieservant,
Thanks to your post above, I just completed the initial survey for the study at the University of Wisconsin. I knew nothing about it! One survey question listed possible sources of how I heard about the study. I found it interesting that breastcancer.org was not listed, nor was there an "Other" opportunity to include it.
Tina
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