Hello fellow wrestlers ... this is my first post ;"first time caller, long-time listener." By nature I have a tendency to hang out in the background and avoid the spotlight (well, unless I've had a few tee many martoonies). I've been undergoing treatment for advanced triple negative breast cancer (mets to lungs) since January and have been struggling, to say the least, with the emotional and physical tolls of this damned disease and the effects of the treatment (currently on Taxol, stopped Avastin a month ago).
I've been lurking around for quite a while being inspired by so many of you and also saddened by the very recent losses of some very dear members right along with you. I have allowed myself to wallow in the victimization of the statistics and it's been difficult for me to contribute to this forum because I just haven't had much positive to offer. Lately, however, I've been coming to terms with everything a little bit (two steps forward, one step back type of thing) and decided I wanted to jump in with all of you already.
I hate that I have to be here but I must say that I am honored to be part of a group of such lovely, strong, intelligent women (I know, there's a couple of guys, too, and you are also awesome!). So, with that somewhat long intro I am brought to my actual reason for posting, an article that caught my eye while waiting for chemo today. My apologies to the organization if I am supposed to have some special permission to reprint this, but, I thought it was of interest and really wanted to share it ...
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From Komen Connection, Spring 2009, Volume V, Issue 1
Milwaukee Chapter, Janet Zylstra, Komen Milwaukee Affiliate President
Triple Negative Breast Cancer
When Nancy Block-Zenna was diagnosed in 2005 with the rare and aggressive form of breast cancer known as triple negative breast cancer, two of her friends created the Triple Negative Breast Cancer Foundation (TNBCF) with just $9,000 to raise awareness and funds for the disease. TNBCF is now a major advocacy organization for women with this form of the disease.
Many of us at Susan G. Komen for the Cure ® have admired TNBCF’s work, and are delighted to formalize our relationship recently with a partnership that is the harbinger of even more promising collaborations to come.
Triple negative breast cancer accounts for about 15% of all cases in the U.S., which means that approximately 25,000 women are diagnosed with the disease every year. It disproportionately affects younger women and women of color and has a higher mortality rate than other breast cancers.
Today, we know breast cancer isn’t just one disease with one type of treatment. The disease takes many forms, and is generally described based on the presence or “expression” of three receptors known to fuel most breast cancers: estrogen, progesterone, and human epidermal growth factor 2 (HER2).
Triple negative breast cancer does not express HER2, or the estrogen or progesterone receptors. That’s why it’s called “triple negative.” At some point in the near future, we hope to describe triple negative breast cancers based on what they are, not based on what they are not.
Many treatments for breast cancer available today use the HER2, estrogen receptor or progesterone receptor as a target. But because those receptors just aren’t present or active, hormone treatments and HER2-targeted therapies won’t work for TNBC patients.
Currently, various types of chemotherapy, and perhaps the anti-angiogenic drug bevacizumab (Avastin) are the only effective systemic therapies for TNBC. Chemotherpay is usually given after a woman has initial breast surgery, but it may be given prior to surgery as well.
And while chemotherapy actually works better in TNBC cases than in other form of breast cancer, it doesn’t work for everyone and doesn’t work well enough for some patients. Many women also receive radiation in addition to chemotherapy.
Some people have though that TNBS is an automatic death sentence. However, most women with TNBC doe quite well, even years after beginning treatment. The problem, however, is that a substantial minority do not do as well.
Komen began funding Promise Grants in 2008 to accelerate the pace of research with the hope of delivering cures more rapidly. The first grants were targeted to inflammatory breast cancer (another highly challenging form of breast cancer), to understanding how obesity may affect the progression of breast cancer, and to development of new treatments for estrogen receptor-negative breast cancer.
Komen is making it clear to researchers around the world that we want to do more about TNBC. Researchers are asked to submit grants that specifically focus on the triple negative breast cancer issue. Such a signal is bound to increase research in this area.
The partnership between Komen and the Triple Negative Breast Cancer Foundation is emblematic of what needs to be done more often as we move toward the goal of a world free of breast cancer. Advocacy groups wherever – and whenever – need to combine thir financial as well as intellectual resources to produce better results faster. For more information about Susan G. Komen for the Cure, breast health or breast cancer, please visit www.komen.org or call 1-877 GO KOMEN. And, to learn more about the Triple Negative Breast Cancer Foundation, visit www.tnbcfoundation.org.
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I know many of you ladies are familiar with TNBCF but I wasn't sure if you were aware of the Promise Grants from the Komen organization for Triple Negative. This was a pleasant surprise to me. I didn't have time today, but I do want to contact them and find out if donations can be specifically allocated to the effort.
I also posted this article on my caringbridge and facebook pages in the hopes of getting the word out through my loved ones.
Well, that's my little contribution for now. Wonderful to meet you all. Thanks for the endless laughs, encouragement and knowledge that is shared. I look forward to being a part of this endeavor.
Have a lovely evening!
Bev~
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Trying to find some positive in Triple Negative ...
- By Dolphinlady
- Posted July 3, 2009 at 12:13 am · 15 replies
- In Support groups
- Shared with the public
Explore topics in this discussion:
Cancer Taxol Surgery Avastin Breast cancer Chemotherapy Carboplatin Obesity Progesterone
15 replies
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- By CJ2006
- Posted July 3, 2009 at 6:43 am
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For those with Triple Negative, I wanted to let you know that there is a Dr. Carey at the University of North Carolina who is reportedly an expert in triple negative breast cancer. A woman in my support program is going to see one of his associates this coming week. I'll let you know what she reports upon her return. Has anyone else been seen for Triple Negative Breast Cancer at UNC?
- By chloemom
- Posted July 3, 2009 at 7:04 am
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Hi DolphinLady!
Thanks for the article ... it is indeed good news! What a terrific contribution!! FYI .. You are only a few miles away from me here in Northern Illinois ... another land locked beach loving person!
Welcome to the greatest group I've yet to find!! As you've said, lots of laughs, encouragement and knowledge ... occasionally lots of tears and always lots of support.
How much longer do you have to do the taxol? I received the P form my first round too. Hope it is going well for you, not many side effects and most importantly ... kicking those cancer cells to oblivion!
- By Beachbabe
- Posted July 3, 2009 at 11:15 am
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Love it when one of the many voyeurs comes out! Dolphinlady, I can tell by your first post that you have a great deal to offer...please don't let it be your last post ;)
Triple negative is getting so very much interest lately, I can feel in my (somewhat cancer ridden) bones that good things are on the horizon for you gals! I have to confess, there are times when I read about all of the advances surrounding Her2 negative, as well as the new stuff for triple negs and I think, "Darn, I wish that med would help me too!"
While we share the same 'mother ship' name of disease, each one of us is so very unique, and thank the Lord the docs and savants are beginning to realize our treatment has to be just as unique.
Hugs~
- By Deanie
- Posted July 3, 2009 at 11:38 am
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Hey, Dolphinlady, love your picture! The article was encouraging and we're all into encouraging.
It took me a year to start being proactive and informed. My initial reaction after the diagnosis was that my demise was iminent so I only planned for events within a 3 month timespan. My ignorance was based on typical perception. Aren't we lucky to live in a period when we have options?
This site is also a blessing. Glad you are a part of it....
- By w1pamela
- Posted July 3, 2009 at 12:29 pm
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Hi Dolphin lady.
I read somewhere on here that TNBC was talked
about at the Boston Conference and that the docs there have great hopes for answers very soon. Maybe it's the Komen thing.
I hope so as I have one Negative. HER2- Which means that they can do in my BC but it will pop up other places unless they can control the growth. At this point they are not willing to give me chemo as I also have heart problems. I think they are bidding time until some of the tumors go down.
I would be more then overjoyed of course if they just found a treatment for the HER2- as I don't know if they will be able to do anything about it.
More so I hope they hurry and find something for all three negs. There is an answer in us somewhere. They just have to find it. Wouldn't it be nice if God, Allah, a Higher Power, Confucius, Buddha, one of those deities would step in and help. Wouldn't it be marvelous if all of them would help. Sigh,
I wish you all the luck and all the prayers I can -- to see you through.
Hugs,
PamW
- By Gentlenatured1
- Posted July 3, 2009 at 1:20 pm
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Welcome to the site, Dolphinlady.
It is most encouraging here.
PAMELA
- By mlm
- Posted July 3, 2009 at 1:29 pm
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Hi,
I, too, am triple negative. Have been on chemo for mets throughout spine since Oct 08. Taxol & avastin did not work for me. Currently on carboplatin & gemzar-results have been remarkable. I went from thinking I was going to die to truly being able to live a quality life with one difference-chemo every 3 weeks. Do not give up. The stats are horrible. I have so much against me-triple negative, diagnosed before age 50, braca 1 positive, recurrence within 10 mos of initial diagnosisAND I AM DOING WELL!!!!! Please do not give up hope-contact me if you need a cheerleader-I have been there and back!! ALSO, THERE IS A NEW DRUG CURRENTLY GOING THROUGH CLINICAL TRIAL-PERP INHIBITOR-IT IS SHOWING PROMISE WITH TRIPLE NEGATIVE BREAST CANCER-Finally something for us!! Ask your Oncologis about this-it is a therapy that targets a specific enzyme which means less in the way of side effects. Prayers are with you. Look at the discussion regarding PERP inhibitor.
MaryLynn
- By ReneP
- Posted July 3, 2009 at 3:09 pm
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Welcome and thanks for the great post
Rene
- By CJ2006
- Posted July 4, 2009 at 8:19 am
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A word of caution ... It is my understanding the breast cancer community in general puts all donations into a "pot" of funds that is then divided into three categories. Each category is then further broken down between issues within each category. Thus only a fraction of 1/3 of your donation would likely go to triple negative, another fraction to inflammatory, another fraction to BC mets, etc. This is not to say that the funds aren't used wisely ... but when you have a specific focus ... your hard earned money is better donated directly to a cause.
For research specifically targeting triple negative, I'd check out the Triple Negative Breast Cancer Foundation at http://www.tnbcfoundation.org/index.html.
ADDITIONAL INFO: Please note that metastastic breast cancer receives only about 1% of the billions of cancer funds raised go toward metastatic breast cancer research. My non-profit offers another alternative. We are awarding a BC mets research grant each year. We are announcing, in advance, precisely how the money will be used so the donor knows where his/her donation is going.
Our 2009 fundraising campaing will support KISS1 cancer suppression gene research by Dan Welch PhD at the University of Alabama, Birmingham. If successful, it could result in a treatment that would permanently prevent our cancer cells from binding together and forming new tumors ... and might even be able to break down tumors already formed!
This is very exciting, cutting edge research. In mice, it is already keeping cancer cells dormant and non-binding. Experimentation is now commencing to determine whether it can break down already established tumors! If the next 12 months go well, clinical trials could begin in 2011!
We're just now getting information on this research on our website at:(www.metavivor.org). Stay tuned for updates.
Good luck and please post what you find out re the triple negative.
CJ
METAvivor Research and Support, Inc.
www.metavivor.org
A 501(c)(3) charitable organization
- By Analemma
- Posted July 4, 2009 at 11:22 am
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The Dr. Carey that you've heard about at UNC is Dr. Lisa Carey, so "she" not "he". A lot of TN's go to her for a consult, but she doesn't have a magic bullet that she's keeping secret and most have said either that they're glad they went because they feel more assured that they are getting the best treatment available, or that it was a waste of time and money because Dr. Carey didn't have anything else to recommend to treatment they were already getting.
As for the PARP inhibitors that everyone seems to be talking about - BS201 has been showing promise and it was a hot topic at ASCO in May, I hear. Phase III trials are beginning this summer, but my understanding is that this phase is not open to metastatic patients. That's very disappointing, because phase II was for mets patients, and I was unable to participate, but told myself that I would really try to get into phase III. With luck, perhaps it will show such good results that it will be fast tracked to the market as Herceptin was, and then it will be approved for treatment for triple negs and covered by insurance. I hope I live long enough for that.
- By debraocn
- Posted July 5, 2009 at 9:42 am
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I too was a "lurker" when i first joined this site. I don't post very often, but there is always good information here and I have found a small number of women who are in circumstances similar to my own and who regularly answer my posts. I have found this very helpful and it gives me a lift emotionally to know that I am not alone in the way i react to news about triple negative bc or to interactions with my family.
Please stay with the site and keep posting when you can.
- By Shes-So-Weird
- Posted July 5, 2009 at 10:39 am
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Hi Dolphinlady,
I too started this ride in January being triple negative involving the lungs and liver. There are fewer treatment options for us, but the Avastin and Abraxine I'm taking is doing a phenomenal job. My last scan showed nothing visible on my liver or lungs, all the tumors have shrunk 50 per cent. My point is that I could be triple positive and using treatments that wouldn't work half as well. As far as being a rare cancer - 12 to 15% isn't rare, one in a bazillion is rare. There are a lot of us. Is it an aggressive form of cancer? My chemo is kicking it's butt, so who's aggressive now, Mr. big, bad C? I remember January when I looked at a bin of marked down Christmas decorations thinking, "I don't know if I'll be here next year." With the help of good doctors, this site, prayers, and time, those thoughts are gone. I know I'm going to live. Attitude can be one of your best medications. About statistics, they aren't my numbers! The web can be so seductive, "I have more information for you. It's not accurate, but just click here." Proceed with caution. Too many sites have "facts", but not many have hope.
Avastin and Abraxine had just been approved by the FDA when I started chemo. Now new treatments like PARP inhibiters are being reported on the national news level. We can see the cusp of cancer's eradication. The cure is coming soon and not too late for us. Believe it.
- By sr2603
- Posted July 5, 2009 at 3:43 pm
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Hi Dolphinlady:
18 months ago I was diagnosied with multiple tumors in lungs YUKA. Got over 12 months on Avastin and Abraxin. Now I am on Xeloda. I have continued to work throughout treatments and remained as positive as I can most of the time, but have to admit down days.
I am not a statistic and dont fret over them I just take one day at a time and live life to the fullest. That is what is important. Don't waste 1 second. When you enjoy and love life, it makes a difference in treatment.
There are new drugs coming out all the time and hopefully clinical trials for us triple III's too.
Just be good to yourself and do something nice every day for you. Even if it is a walk, listen to a nice CD, buy a new lipstick or shower gel! Go to a movie. Just live life as best you can.
Hugs and welcome to the site where there are wonderful girls
- By kleighk
- Posted July 6, 2009 at 8:49 pm
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Hey, Dolphinlady, love your picture!!! I have one like that from high school when I went to the Keys and swam with the dolphins. What an experience!!
About statistics---they are just there to be broken!! I have been a metavivor for 8 years, and plan on being here a lot longer! I'm not triple negative, but I am glad that new and wonderful things are on the forefront for you TN's. I have been through many different combos to keep my bone mets from going anywhere else, and some of those treatments were not even around when I was dx. ( First time in 1994 w/StageII lymph involvement)
Good luck to you, I'll also keep you in my prayers. And I'm glad you jumped the fence and started posting. I love the interaction and information on the site!!!
- By Dolphinlady
- Posted July 8, 2009 at 8:40 am
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Wow! What a wonderfully, warm and fantastic welcome! Not that I expected anything less from all of you beautiful cancer babes. I'm so glad I finally took the leap. :)
CJ, I think your advice makes sense and I will direct anyone wanting to make a donation for this cause to to it directly to the TNBCF.
Analemma, I have given my onco the articles on PARP Inhibitors to peruse. His initial response is to continue using what is working until it no longer works and he is continually on the lookout for trials in our area. I am fortunate to be receiving my treatment at an institution that is part of a medical college which I feel is always on the cutting edge of anything new.
I like everyone's reminders about not succombing to statistics ... which I was guilty of from the get go. Once I was well enough after my lung surgery in December the first this I did was hop on the computer and tried to find as much as I could about my particular cancer. Everything was grim. And, it doesn't help that my primary care physician and oncologist have been cautioning me all along in that respect. However, I've worked on my attitude throughout the past seven months and have decided that although a positive attitude is not going to cure me, it sure goes a long way in dealing with living with this disease.
As my darling husband keeps reminding me, even though my treatment protocol has been harsh for me, I need to follow through and keep hanging on because there will be something better right around the corner. I just gotta do what I gotta do to keep the monster at bay until I can get to the next thing. I'm happy to say that my PET scan last month showed that all of the nodules in my lungs were either greatly diminished or completely not visible ... and I had a LOT of them in both lungs.
Cloemom, I am glad to know that there is a fellow wrestler physically close to me. I'm sure there are others, as well, who have just not "come out" yet. I'm originally from the Chicago area (born in Berwyn). I would think that eventually there will be a conference held in the Windy City with Northwestern having a great reputation for cancer care and it just being such a large city. I am currently going through financial difficulties because of the cancer, but, I've got a few promising things around the corner that will help get me back on my feet. I think maybe we should think about planning an alligator wrestling tournament right here in the midwest maybe at the end of the summer.
Beachbabe, I have to say that you are a girl after my own heart. I'm just a tad bit envious that you are so close to the beach ... I would be a complete beach bum if I could ... Jimmy Buffett on the iPod and frozen cocktails for everyone! I think it's wonderful how much you do and what a great spokesperson you are. I for one want to thank you for everything you do where you are and on this site. You have a wonderful gift of storytelling and are a wonderful cheerleader for all of us.
I should probably shut up about now ... I do have a tendency to go on and on when I'm writing. But, to each and everyone of you ... thank you again for the awesome welcome. I will keep posting and look forward to continuing to "know" each one of you and the details of your lives. Ever since I became a member I feel I have gotten to know each one of you and I pray for each and everyone of you to continue to have the strength to deal with this disease in addition to the daily dramas life throws at you and that an answer to each of your situations is right around the corner.
Be well my wonderful new group of friends and have a most beautiful day!
Bev~
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