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Old 10-27-2014, 10:16 PM   #21
sarah
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Re: A Place to Vent about "Awareness"

thanks Amy. I agree with the writer and how most of us I believe feel; we want the money spent on research, on scientists like Dr. Slamon. Plus there are many different cancers and as a founder of a support group for English speakers in France, I can tell you that pancreatic, lung and throat are basically a death sentence. Yes, we've had several bc members pass away also but the majority of our members have bc and many of them had cancer some 25 years ago. We need to stop cancer period. In all its forms. The awareness is out there, certainly for bc. I like to give to those who do research or who directly help people (like this site, wouldn't we be lost without it?) and to people who need financial aid to get their treatment. I don't like to think the limited donations I can give go to awareness or administration or publicity, etc.
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Old 10-28-2014, 08:55 AM   #22
PinkGirl
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Re: A Place to Vent about "Awareness"

this is the pic Bonnie was trying to post.

Click image for larger version

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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
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Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



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Old 10-28-2014, 09:03 AM   #23
BonnieR
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Re: A Place to Vent about "Awareness"

Thanks for posting for me Pink! Click on it everyone and you will see one of the most misguided, offensive fundraising ideas ever! Who thinks of these things?
The creator thought they were a good promotion for mammograms
Keep the faith
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 10-28-2014, 11:34 AM   #24
'lizbeth
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Re: A Place to Vent about "Awareness"

Ohhhh . . . I'm sorry Bonnie, but I thought those were hysterically funny. I should have made those for the company fundraiser for Susan G. Komen.

On a serious note, all this talk about donations and it takes Sarah to remind us about our own board being a non profit. Thank you for correcting an important oversight. I checked on donating and this is the address:

Mail your tax-exempt donations to: HER2 Support Group Org.
109 Lambertville HQs Road
Stockton, NJ 08559

My question is who does this money go to? I thought the Druthers were in Southern California.

Last edited by 'lizbeth; 10-28-2014 at 11:34 AM.. Reason: typo
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Old 10-28-2014, 01:19 PM   #25
BonnieR
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Re: A Place to Vent about "Awareness"

I guess they could be funny in a perverse sort of way. But they just seem vulgar to me
I can't imagine who would actually eat one!!!!
Anyway, my contribution to "awareness month"!!!
Keep the faith
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 10-28-2014, 02:39 PM   #26
annettchen
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Re: A Place to Vent about "Awareness"

Who on earth comes up with something like that? And what on earth is the squished breast made of? That is just wild... And I have to agree, this is so bad it's borderline funny...

My oncologist had the pink ribbon on today when we discussed my re-staging. Apologize for lack of knowledge, but is the Pink Ribbon or even the color pink itself tied to Komen exclusively? I kind of thought that there's e.g. other color ribbons for other types of cancer, even other illnesses? So to me the pink ribbon in and out of itself was not necessarily a bad thing - even though I'm tired of all the educational blabla?
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----------------------------------------
03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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Old 10-28-2014, 05:25 PM   #27
'lizbeth
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Re: A Place to Vent about "Awareness"

I would eat them, they look like S'mores. Which explains why I'm so plump and Bonnie is so trim.

The following pink ribbon article is from Think Before You Pink:
Quote:
History of the Pink Ribbon

Pretty in Pink

By Sandy M. Fernandez

The woman was 68-year-old Charlotte Haley, the granddaughter, sister, and mother of women who had battled breast cancer. Her peach-colored loops were handmade in her dining room. Each set of five came with a card saying: “The National Cancer Institute annual budget is $1.8 billion, only 5 percent goes for cancer prevention. Help us wake up our legislators and America by wearing this ribbon.”… Then Self magazine called.
From the beginning, the pink ribbon connoting breast cancer awareness has been embroiled in controversy. Today, some members of the movement wear it proudly, giving thanks for both the symbol and its attendant charity-dollar largesse. Others hate it with a passion. But to much of the media and the world at large, the ribbon is the breast cancer movement. Where did the ribbon come from, where is it going, and what has it meant along the way?
The merging of the ribbon and symbolism in this country came about in two huge leaps. The first occurred in 1979, the year that Penney Laingen, wife of a hostage who’d been taken in Iran, was inspired by song to tie yellow ribbons around the trees in her front yard. The ribbon, Americans were told on the nightly news, signaled her desire to see her husband home again. For the first time, ribbon became medium, ribbon became message. Yellow ribbons sprouted up across the country in solidarity. That was step one.
Step two occurred 11 years later, when AIDS activists looked at the yellow ribbons that had been resurrected for soldiers fighting the Gulf War and said, “What about something for our boys dying here at home?” The activist art group Visual AIDS turned the ribbon bright red—“because it’s the color of passion”—looped it, spruced it up and sent it onto the national stage during the Tony awards, photogenically pinned to the chest of actor Jeremy Irons.
Ribbons had arrived. Overnight, every charitable cause had to have one. After just a short time, they were so ubiquitous that The New York Times declared 1992 “The Year of the Ribbon.”
The stage was set for the evolution of the breast cancer ribbon.
First on the scene was the Susan G. Komen Breast Cancer Foundation. Komen had been handing out bright pink visors to breast cancer survivors running in its Race for the Cure since late 1990. In fall 1991, mere months after Irons’ electrifying appearance, the foundation gave out pink ribbons to every participant in its New York City race. This first use of the ribbon, though, was for Komen just a detail in the larger and more important story of the race. To really break out, the pink ribbon would need a situation in which the ribbon was the event.
And it didn’t take long for that situation to arrive. Early in 1992, Alexandra Penney, then the editor in chief of Self, was busy designing the magazine’s second annual Breast Cancer Awareness Month issue. The previous year’s effort, inspired and guest edited by Evelyn Lauder—Estée Lauder senior corporate vice president and a breast cancer survivor—had been a huge hit. The question was, how to do it again and even better. Then Penney had a flash of inspiration—she would create a ribbon, and enlist the cosmetics giant to distribute it in New York City stores. Evelyn Lauder went her one better: She promised to put the ribbon on cosmetics counters across the country.
Penney recalls the birth of the ribbon now from her office at Ziff-Davis. “You know how it is when things are in the air,” Penney says.
“A week later Liz Smith wrote about a woman who was already doing a peach-colored ribbon for breast cancer.” The woman was 68-year-old Charlotte Haley, the granddaughter, sister, and mother of women who had battled breast cancer. Her peach-colored loops were handmade in her dining room. Each set of five came with a card saying: “The National Cancer Institute annual budget is $1.8 billion, only 5 percent goes for cancer prevention. Help us wake up our legislators and America by wearing this ribbon.”
Haley was strictly grassroots, handing the cards out at the local supermarket and writing prominent women, everyone from former First Ladies to Dear Abby. Her message spread by word of mouth. By the time Liz Smith printed her phone number, Haley had distributed thousands.
Then Self magazine called.
“We said, ‘We want to go in with you on this, we’ll give you national attention, there’s nothing in it for us,” Penney says. Even five years later, her voice still sounds startled by Haley’s answer. “She wanted nothing to do with us. Said we were too commercial.”
At the end of September 1992, Liz Smith printed a follow-up to Haley’s story. She reported that Estee Lauder had experienced “problems” trying to work with Haley, and quoted the activist claiming that Self had asked her to relinquish the concept of the ribbon. “We didn’t want to crowd her,” Penney says. “But we really wanted to do a ribbon. We asked our lawyers and they said, ‘ Come up with another color.”
They chose pink.
There are many choices to be made after you decide “pink ribbon.” According to C.M. Offray and Son, the largest ribbon-makers in the world (they supply the ribbon on which Olympic medals are hung), ribbons come in three basic styles: woven, grosgrain and craft, each with its own variations. Given the plethora of decisions that had to be made in designing October’s surprise, it’s startling that hue wasn’t one of them.
“There are so many different shades, but it would have been our ‘150 pink’—basic, standard pink,” says Ellie Schneider, vice president of publicity and public relations for Offray, when the ribbon is mentioned. “It’s pretty, a pastel pink without being too washed-out or powdery-looking. It’s one of our best-selling colors. It’s been in our line forever.”
Because Estée Lauder and its corporate philanthropy, the Breast Cancer Research Foundation, did not respond to repeated requests for interviews, we don’t know who exactly ordered the 150 pink in grosgrain. Penney recalls only that Estée Lauder made all the manufacturing choices, leaving her to publicize the promotion and edit the accompanying issue of her magazine.
What we do know is that because of Haley’s ribbon, Self and Estée Lauder had traded in a color that was merely peachy for one that was an icon, a semiotic superstar.
“Pink is the quintessential female color,” says Margaret Welch, director of the Color Association of the United States. “The profile on pink is playful, life-affirming. We have studies as to its calming effect, its quieting effect, its lessening of stress. [Pastel pink] is a shade known to be health-giving; that’s why we have expressions like ‘in the pink.’ You can’t say a bad thing about it.” Pink is, in other words, everything cancer notably is not.
NABCO’s executive director, Amy Langer, told The New York Times Magazine in 1996 that breast cancer, unlike other health threats to women, was “loaded”: “It’s about body image, it’s about nurturing—it’s certainly about femininity,” she was quoted as saying. For women who feel this way, who experience cancer as predominantly a loss of womanhood, what better color to pin on than pink—girlie, pretty, healthy pink?
In fall 1992, Estée Lauder makeup counters handed out 1.5 million ribbons, each accompanied by a laminated card describing a proper breast self-exam. They collected over 200,000 pink ribbon petitions urging the White House to push for increased funding for research.
Within a year, Charlotte Haley’s loop of peach ribbon was history.
At the same time that the pink ribbon was becoming a national symbol, a sea change was taking place in American boardrooms. Beginning in the mid-1980s, the corporate world was discovering cause-related marketing. Carol Cone, founder of Cone Communications, was a major force in this development. Research underwritten by her small Boston-based public relations firm proved that, given the same cost and quality, more than half of consumers would switch from a particular store or brand to one associated with a good cause. Armed with this data, Carol Cone set out to teach America how to do well by doing good. In the late ’80s, she engineered Reebok’s successful adoption of the human rights issue. And in 1993, she set about helping Avon cosmetics stake out a claim on breast cancer.
“The challenge for Avon at the time was creating a unique program,” Cone says. By her count, there were already 15 medium-to-large companies, including fellow cosmetics titan Estée Lauder, involved with this issue. Avon’s new campaign would have to push away from that pack but hold tight to the signifiers of breast cancer.
The fulcrum that made this maneuver possible was the pink ribbon. About two inches long, the original Avon pink ribbon is a weighty and formidable piece of jewelry, half pink enamel and half gold cast, winced in the middle by a flowering gold rose. It—and a smaller, more circumspect lapel pin, developed so men would feel comfortable wearing the symbol—retails for $2. The pink signaled breast cancer, but the addition of the color gold and the rose are distinctly Avon. In its first two years, the pin raised $10 million. Aprés pink pin, lé deluge.
In 1993, the October after Avon’s launch, Estée Lauder introduced a heart-shaped compact with an enameled pink ribbon design, profits to go to its Breast Cancer Research Fund. The Susan G. Komen Foundation began offering a pink rhinestone brooch. Carolee Jewelry designed another one—a female runner in midstride, flowing loop ribbon in hand. Nightshirts, angel statuettes, teddy bears, sports clothes, credit cards, Daytimers all hit the market and, with increasing speed, other companies joined in, each offering its own version of the traditional ribbon. December 1996 found the New York Times Magazine labeling breast cancer “this year’s hot charity.”
“Today there are 80 to 100 companies involved, and that’s only the ones big enough to get on your radar screen,” Cone says. Without pausing, she casually prognosticates about “the next 100 companies to get involved with breast cancer.”
She and the Times agree on the source of the disease’s peculiar popularity in corporate America. It is a quality that the breast cancer awareness ribbon both captures and enables. “Companies want to support breast cancer,” Cone says simply. “Breast cancer is safe.”
Unlike AIDS, breast cancer is free of what companies euphemistically call “lifestyle issues.” And, perhaps as importantly, breast cancer provides charitable credentials for what can be a very small investment. With the ribbon’s message of ”awareness” translating most often into a familiarity with early detection techniques, all a company has to do, to do good, is put a ribbon on its merchandise.
New Balance, for example, donates money from the sale of its Race for the Cure caps, socks and T-shirts to the Komen Foundation, but its pink ribbon sneakers, a Foundation spokesperson says, are ”just for awareness.” The sneakers have the tiny pale-pink outline of a ribbon sewn onto the corner of their tongues—difficult if not impossible for anyone except the owner to see. The possibility that those two wan loops might remind woman to get the mammogram that saves her life, however, provides the sneakers with their raison d’étre.
It is this dynamic that drives the pink ribbon’s detractors to distraction. “There is a value to awareness, but awareness of what, and to what end?” asks Barbara Brenner, activist and executive director of Breast Cancer Action (BCA) in San Francisco. “We need changes in the direction the research is going, we need access to care—beyond mammograms—we need to know what is causing the disease, and we need a cure. The pink ribbon is not indicative of any of that.”
Of course, not everyone in the breast cancer movement thinks that commercial benefit is bad. “Avon has used the symbol to touch people’s hearts and put money back into the cause,” says Beverly Baker, executive director of the Mautner Project for Lesbians with Cancer, which receives pink ribbon funding. “I certainly wouldn’t take issue with that.”
Between 1991 and 1996, federal funding for breast cancer research increased nearly fourfold to over $550 million. And according to the American Cancer Society, the percentage of women getting annual mammograms and clinical breast exams has more than doubled over the last decade. While the Komen Foundation lost out on patenting the ribbon, it has collected millions from companies that use it and donate the proceeds. Avon, which has raised $25 million purely from merchandise, is today the largest private funder of community-based nonprofit breast cancer programs.
But signs abound that the reign of today’s ribbon is waning. When the fashion industry took on breast cancer, they made their own symbol, a blue bull’s eye, which is now in six countries. Groups on the West Coast substitute the more “powerful” purple loop. In Canada, BCA Ottawa has turned the loop upside down, for the tears shed at diagnosis and lined it with black, to remember women who have died. San Francisco’s BCA has a white-on-black button that reads “Cancer Sucks.”
For those who, like Barbara Brenner, see the pink ribbon as a red herring—and the 44,000 women dying of breast cancer each year can ill afford the distraction—the decline of the pink ribbon comes none too soon. “We have to question our willingness as cancer organizations to get into bed with people whose ultimate goal is profit, not health,” Brenner says. And her point—that corporate benevolence is linked with the appearance of care rather than active solutions—is supported by history. After all, homelessness was the darling corporate cause once, in the years before welfare reform.
Reprinted from MAMM, June/July 1998





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Old 10-28-2014, 07:07 PM   #28
annettchen
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Re: A Place to Vent about "Awareness"

Thanks 'lizbeth.
Very interesting.
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----------------------------------------
03/2014: Diagnosed with ER/PR-, HER2+++ MBC (bone mets, oligometastatic)
04/2014: Started 6 cycles of "PHD" (Perjeta, Herceptin, Docetaxol)
07/2014: Finished 6 cycles of PHD; restaging; 2 bone mets are sclerotic - looks like Herceptin and Perjeta is working
10/2014: STABLE!
01/2015: STABLE!
04/2015: STABLE!
08/2015: STABLE!
12/2015: BRAIN METS. BODY STABLE.
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Old 10-28-2014, 10:50 PM   #29
BonnieR
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Re: A Place to Vent about "Awareness"

Thanks for posting that 'lizbeth
And thanks for the thin remark. But my profile picture doesn't extend to hips! Remember , I eat dessert daily. How thin can I be?
Keep the faith
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 10-29-2014, 07:26 AM   #30
PinkGirl
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Re: A Place to Vent about "Awareness"

i don't think it is a funny picture. It is disgusting to me but I might be sensitive about not having any breasts. I never know how to react to boob jokes now that mine are history. I guess a person could incorporate boobs into anything ~ a house with boob windows, a tree with boob leaves, a street with a boob sidewalk, a car with boob wheels ..... I don't find the boob cookies amusing. Pardon the pun but I think they are in poor taste 😉
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 10-31-2014, 08:06 PM   #31
norkdo
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Re: A Place to Vent about "Awareness"

During my initial chemo treatment, I went crazy in October's pink prevention month and ranted like crazy. this was back in 2011. The one whose opinion i cared most about ended up dying way way way too soon. She and I both had Stage 3b her2 breast cancer.

She didn't seem to like how crazy I got {against pinktober}. She ended up dying within two yrs of diagnosis.

I am burnt and traumatized from her scolding of me. I am devastated by her death. I can't think or breathe on this topic.
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fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 11-01-2014, 07:07 AM   #32
'lizbeth
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Re: A Place to Vent about "Awareness"

I too have been scolded, and it made me feel bad for awhile. This is an important issue. People give out of the kindness of their hearts. But the money is not used productively in many cases for the research needed or cancer patient support.

I am staring at these Relay for Life trinkets that the American Cancer Society wasted money on. Buttons, pins, keychains, etc. It hurts me to throw these things away. I don't need them or want them. But I need the money to go to research, or it could have paid for the gas for me to get to appointments. I spent about $1000 month on gas and they helped me with a one time $300. I am still paying financially for cancer, and others are much worse off too.

We don't need trinkets or pink ribbons. We need a cure for everyone.
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Old 11-01-2014, 09:27 AM   #33
Mtngrl
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Re: A Place to Vent about "Awareness"

I hope everyone made it through Pinktober OK. My objective was to create a safe space for all viewpoints, and, as always, the wonderful members of this board delivered on that. I love the openness and kindness of almost all interactions here. Also, yes, thanks for the reminder that this board depends on donations.

We can keep talking about this if you want. But here's my "goodbye and good riddance" contribution for now:



In case that image doesn't actually show up, here's the URL: http://www.zazzle.com.au/i_survived_...08241114647194
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 11-01-2014, 01:44 PM   #34
BonnieR
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Re: A Place to Vent about "Awareness"

I was just thinking this as I checked in. We survived another onslaught of people trying to capitalize on breast cancer
Let's have some apple pie and cider to celebrate the Fall!
Keep the faith
__________________
Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 11-01-2014, 02:00 PM   #35
BonnieR
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Re: A Place to Vent about "Awareness"

'Lizbeth, you reminded me. In my first year or so, I participated in the local Cancer society Relay for Life. The next year I did not. But they mailed me " a sorry you couldn't attend" package that included an elaborate rally medal on a ribbon. How did they know I wasn't dead??? And what a waste of resources
Keep the faith
__________________
Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 11-03-2014, 12:47 AM   #36
norkdo
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Location: ottawa canada
Posts: 367
Re: A Place to Vent about "Awareness"

amy, mountaingirl, my sister of three years...i shared your blog on my facebook page. with a preface stating how proud i am of you.
Beautifully written, beautifully researched. Truth.
Keep speaking the truth.
And thank you from the bottom of my heart.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 11-15-2014, 01:55 PM   #37
Lisalou
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Location: Minnesota
Posts: 184
Re: A Place to Vent about "Awareness"

This is a link to an article that my son sent me,
that pretty much sums up the problem with pinktober and Susan G Komen foundation
For $100,000, Susan G. Komen does its bit
__________________
[SIGPIC]Lisa
Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast

We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt
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Old 11-15-2014, 07:50 PM   #38
Mtngrl
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Location: Denver, CO
Posts: 1,427
Re: A Place to Vent about "Awareness"

Nora,

I love you too.

Amy
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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