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Old 10-18-2011, 06:39 AM   #21
KDR
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Location: New York, New York
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Re: Metastatic Breast Cancer and Nancy Brinker

CoolBreeze,
You zeroed in on it. I know doctors in and around her circle. I thought about posting it, weighing their confidentiality in telling me vs. patients measuring themselves against EE as a guage (to a certain degree) and decided I will post. I'm sorry I can't divulge my sources, but I can assure you, it's accurate.

Hope you are feeling well, and will look forward to your continued NED posts.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 10-19-2011, 12:23 AM   #22
Trish
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Re: Metastatic Breast Cancer and Nancy Brinker

RACHELHMD
Don't apologise to me for using "yet" after not being stage IV. I read it as a gracious way of saying "There but for the grace of God go I"-I was brought up a Catholic and some things stay with you! You actually made me feel less stigmatised so I am grateful to you for your consideration of those of us with Stage IV disease.
I don't think your use of "yet' has made it at all more likely you will get mets. I am very hopeful that you will stay cancer-free but I very much appreciate your grace and support.
Amy, I thought your contribution was very measured and open minded.People do die from this disease even when they take advantage of every treatment that is available to them. I don't really see the point of using high profile people as role models either as inspiration or as cautionary tales. Breast Cancer is heterogenous and even those of us with very similar tumour profiles (on the features that we currently know about and can be characterised) vary in our response to treatments. I believe we all deal with this disease in the best way we can, and it isn't always the same way. While we are probably nowhere near a cure there are a lot of hopeful treatments on the horizon. Bring 'em on!
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 10-19-2011, 06:04 AM   #23
KDR
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Re: Metastatic Breast Cancer and Nancy Brinker

Trish,
Wonderful post. So forward, so truthful.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 10-20-2011, 01:52 PM   #24
Mtngrl
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Re: Metastatic Breast Cancer and Nancy Brinker

Thank you, everyone, for your contributions to this conversation.

I've been thinking about how everyone has her/his own coping mechanisms and ways of grappling with difficult situations. There's no "right" or "wrong" way. We have different personalities, differing levels of support from others, different strategies for taking care of ourselves, and, yes, Trish, different diseases. I love you all, and I'm happy we have each other to talk to.

I think some of the "push back" that Komen has been getting may be helping steer the conversation in helpful ways. The article that Nancy Brinker recently published seems, to me, to be acknowledging some of the other aspects of breast cancer besides the pink, fluffy ones. Here's a link to it: http://www.usatoday.com/news/opinion...men/50815702/1

She calls herself a breast cancer expert, and while I don't challenge her right to call herself that, it seems to be part of our "celebrity" culture. People appoint themselves thought leaders on various subjects, and somehow they get a lot of air time. It seems to me that sometimes they are simply people who are good at raising money.

Money is not unimportant, and being able to run a nonprofit well is challenging and admirable. But I've seen Nancy Brinker in many settings, and she keeps saying the best thing we have is mammography, and pushing for more of it, and she keeps talking about that 98% five year survival rate for early stage breast cancer. To me it looks like she's letting people assume that the situation is better than it really is. I certainly had no idea, before I was diagnosed, how awful even a "successful" course of breast cancer treatment can be. I've learned so much from all of you.

Of course funders need to feel good about their donations. But I have a problem with trying to solve public health problems with "free market" techniques. It doesn't work as well as a concerted, centrally coordinated, truly public effort would. To put humans on the moon we created NASA and got it done in 10 years. The "war on cancer" has been going on for 40 years, and it's a hodgepodge of research groups, for-profit companies, universities, and even the U.S. Department of Defense. One aspect of the "privatization" that should interest many of us is that Taxol was discovered by publicly funded research (National Institutes of Health), and then the rights were sold to a private company, Bristol Meyers Squibb, which makes a huge amount of money on it. http://www.cptech.org/ip/health/taxol/

I don't think anyone deliberately sets out to make an "industry" out of a horrible disease. I don't think anyone has deliberately decided to make breast cancer a "chronic condition." But the financial incentives for doing that as opposed to finding a way to prevent or definitively cure it are stunning.

GE is doing a survey of women for suggestions of how to make it better. I told them I'd prefer that they put money directly into prevention and cure research. Of course, GE makes mammography equipment. This article repeats the 98% five year survival meme, of course: http://www.healthymagination.com/blo...of-the-future/

Here's a link to a blog post by Gayle Sulik that provides food for thought on the breast cancer "business:" http://gaylesulik.com/2011/10/19-birth-of-the-perpetual-fundraising-industry/
__________________
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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Old 02-28-2012, 10:27 PM   #25
Haily
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Talking Re: Metastatic Breast Cancer and Nancy Brinker

Sir/Madam:I had a mtmeactosy in January 2010 at the age of almost 82 (Feb. 1.) I had been healthy most of my life. I only missed two days of teaching school over a 20 year period. We only ate sweets away from home. I didn;t make a practice of pie and cake baking.A health problem of weakness began in the late seventies. It was occasionally and maybe once a year happening. My doctor suggested eating a deli meat when it happened. By 1996, it began to happen more intense. I made three trips to the ER over a period of perhaps three years, but nothing showed up to be wrong. I decided it was low blood sugar which proved wrong. For three years I walked three miles a day until in the summer of '07 when I began to get weak while walking. By the summer of '08, the doctor wanted to know what I ate. He found that I didn't have protein for breakfast. So I started eating close to 20 grams of protein each meal. This stopped the weakness.When I found my cancer, I couldn't believe it as we measured our food that we ate. Yet we did gain weight with the protein diet, but we ate carbs, too. I wondered if the protein caused the cancer. My mom and dad ate the same foods which were raised on a farm without sraying fpr pesticides. My dad died with prostate cancer and my mom died with diabetes. Is food the problem?
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Old 02-29-2012, 10:18 AM   #26
bejuce
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Re: Metastatic Breast Cancer and Nancy Brinker

Just found this thread. WOW! I never asked for cancer but I'm glad mine was HER-2+ just so I could know and be inspired by you. I wish I had more time (I'm at work, last day of the month, etc.) to write an extensive post today but I'll try to do that later. I could go on and on about how these breast cancer organizations upset me. When I was diagnosed and went on disability to focus on getting well, I decided I was going to be an advocate and try to do something about it. I joined a research advocacy group to try to understand the research going on and even went on a panel at the DoD to review breast cancer research grants.

I remember quite a few seminars on research going on how to understand the metastatic process. Unfortunately, there seemed to be many more grants I reviewed on environmental causes of breast cancer or on basic fundamental research to understand cellular pathways. I think the more advocates we have out there on these panels trying to push the research agenda, the more we'll get our message across to the researchers.

I think our advocacy needs to be at the research level (Yes, Nancy, in the lab!) rather than at the Komen level if you know what I mean. I too am angry at the pinketization of breast cancer and agree that there's nothing pink or rosy about it. I also think that the breast cancer community needs to grow up and face issues head on - like, for example, discussing death among us regardless of stage.

I have an example of something that upset me a couple of months ago in the breast cancer community. A local state senator here in CA tried to pass a bill forcing the radiology reports to contain information about breast density and forcing the radiologists to discuss this with the patients. I supported the bill and wrote to my fellow advocates asking them to provide their support, but I was perplexed that a lot of them thought that breast density information shouldn't be something that the government should force the doctors to discuss. I think people put their political agenda (e.g., Komen and the Planned Parenthood issue recently) ahead of the patients.

I recommend you all read the book "How We Do Harm" written by Dr. Otis Brawley of the ACS. He talks about the disparities in cancer care in this country starting his book with a story of a woman in Atlanta who came to the hospital with her breast in a ziploc bag. She had had an auto-mastectomy - basically her breast fell off because her tumor had gotten so large that it cut off all vessels and support for the tissue. She didn't have insurance and was afraid to go to the doctors, having lived with the tumor in her breast for 9 years before her breast fell out. Where is detection for these women? Where is the Komen outreach for these women? These women are still out there, dying of their cancers. We recently saw two brilliant young women - Rachel Moro and Susan Niebur - die of their cancers. They were strong advocates online trying to support more research into metastatic cancers. The money needs to go to the research, not to push political agendas or to try to pinketize the disease.

Gotta go back to work now, but I'll try to join in the discussion later.
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 03-01-2012, 05:22 AM   #27
sarah
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Re: Metastatic Breast Cancer and Nancy Brinker

You put it clearly and correctly when you said "the money needs to go to research, not to push political agendas or to try to pinketize the disease."
We all agree with you.
Sarah
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Old 03-12-2012, 06:41 PM   #28
chemteach
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Re: Metastatic Breast Cancer and Nancy Brinker

Sarah, you said it well. There is so much mor to this disease than the layman sees. I was a layman, and I thought pink was helping and made me feel so good. But now I am a part of this disease and pink is no longer the answer. Knowledge is power. I didn't want this knowledge, but I was faced with it.
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7/25/2011 Diagnosed DCIS and IDC on left from biopsy.
8/9/2011 Bilateral mastectomy
7mm clear margins Stage 1b, grade 3, 0/4 SLN ER- PR+ Her-2/neu +
9/19/2011 Started TCH every 3 weeks, TC for six cycles, Herceptin for 1 year

May all of your dreams bloom like daisies in the sun....
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Old 03-24-2012, 11:35 AM   #29
sarah
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Re: Metastatic Breast Cancer and Nancy Brinker

Hi Chem,
agree. research, research, research and a cure.
good luck and continue good health
health and happiness
love sarah
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Old 03-28-2012, 02:13 PM   #30
Mtngrl
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Re: Metastatic Breast Cancer and Nancy Brinker

Dear Ms. or Mr. Suprakash,

Most of the people on this site have breast cancer, so the risk for us is 100%. Consequently most of us don't spend a lot of time discussing risk factors. That being said, birth control pills and abortion have not been proven as risk factors.

I had zero risk factors, other than being female and living in North America. Focus on individual risk factors lets environmental causes (toxic chemicals, radiation, etc.) off the hook. It blames the victim.

Komen directors don't get larger salaries than most comparable nonprofits. In fact they're relatively small. The issue, for me, is the "hope" and "cure" rhetoric for a disease that has a 50% recurrence rate, and 40,000 deaths a year in the U.S. Most people ending up at Stage IV (metastatic breast cancer) die from it. Early detection doesn't seem to do much good. But Komen keeps deliberately citing its 98% five year survival statistic. All early detection does in most cases is increase the number of years you end up being a cancer patient.

If metastasis could be stopped or prevented, doctors could be conservative about treating primary tumors. They could just monitor them and respond if necessary. No "slash, burn and poison." It's the metastatic stage that kills, not the tumor. Yet the percentage of Komen's funds going to research has dropped steadily over the years.

GE plans to spend $1billion on making mammograms less hellish. I told them I'd prefer they put the money into research. Not gonna happen--they make mammography equipment. But I had my say.
__________________
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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Old 03-28-2012, 04:00 PM   #31
Mandamoo
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Re: Metastatic Breast Cancer and Nancy Brinker

Hear, hear Amy!
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Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis

June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions

Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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Old 03-28-2012, 04:11 PM   #32
Mtngrl
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Re: Metastatic Breast Cancer and Nancy Brinker

Amanda,

Good to hear from you! I was just thinking about you today!

Best wishes!
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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 03-28-2012, 04:16 PM   #33
dawny
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Re: Metastatic Breast Cancer and Nancy Brinker

Thanks Amy!

I was thinking of you too Amanda - nice to "see" you.
Dawn
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Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lung nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 didn't work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
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Old 06-03-2012, 04:56 AM   #34
sarah
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Re: Metastatic Breast Cancer and Nancy Brinker

spend the money on researhc ONLY. why not give the money directly to people like Slamon and the person who came up with TDM1 (I forget his name unfortunately but he's with Immogene). Forget the pink ribbons, forget getting the word out - it's out unless you live in a cave. give it to the talented researchers that's what counts now and support the things that work that maybe won't make anyone any money!!! because I'm convinced they are out there but hey if you can't make billions, no point in making them. like alternative energy, no mega profits, no incentive. Cancer is a very profitable disease so how can we trust the pharmaceuticals to work for us??? they want to sell more drugs. yes they want to help us but cure us??? I wonder. Only governments have the incentive to end cancer and they don't have the means or support because there's too much corruption. Energy and cancer could be solved with all the money thrown at them but......is it profitable enough????
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Old 06-05-2012, 04:57 PM   #35
Mary Jo
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Re: Metastatic Breast Cancer and Nancy Brinker

Amy,

What a well written and truthful post. I couldn't agree more.

I was not diagnosed at stage IV nor was I ever (thank God) stage IV. I was diagnosed at stage 2B....went through my surgeries, chemo, herceptin and radiation and here I am, 7 years later NED! Why? Definitely not my wishful thinking or me doing everything right......(cause I don't) - I just am.

I know so many (Fighters by every sense of the word) who have lost their battle. Yes, many are surviving this disease but way too many still die from it. I pray a cure is found.

Thanks Amy for speaking out....

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

16 Years NED

<>< Romans 8:28
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Old 10-09-2012, 10:55 AM   #36
Nancy L
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Re: Metastatic Breast Cancer and Nancy Brinker

It's October again. I don't know about you but I am sick of everything pink including pink shoes on football players that later get auctioned off to fans as well as BC clothing from Ford Motor company. I am posting to this tread to raise visibility to an informative discussion last year on the state of metatastic research in case some of you missed it. Until the funding model changes to focus on understanding and stopping metatasis, very little will really change. We need to move past awareness campaigns to supporting efforts to end this disease once and forever. Ending diseases like breast cancer is the only way health care costs will ever be controlled. I have read a three week treatment of TDM-1 will cost more than $5K. Each new drug is more expensive than the last and these costs are unsustainable.

I agree with Phil that that the FDA approval process needs to be reformed but I think the govt grants for BC research do too. If Romney wins, maybe we can write a letter to Ann with all our names and see if we can get an advocate in the white house. Yes, she was lucky to have only stage 0 breast cancer but I can tell from when she talks about it that it is still on her mind.

I will add the following information which I read today. This is what prompted my post.

Metastatic Research Funding: government sources
Danny Welch, PhD, a researcher on metastasis at University of Kansas Cancer Center (previously at University of Alabama) says only a few hundred scientists in the world are trying to understand the process: Its responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget. click here. see page 4. Quote is based on European studies and appeared originally in the Journal of European Cancer.
*
Metastatic Research Funding by Susan G. Komen Foundation
2012 ad campaign SGK states: In just the past six years, over $35 million in funding has been awarded to help interrogate why cancer spreads, discover which genes can suppress tumor growth, develop therapeutics to target metastasis and find ways to help the immune system fight metastasis.*
Using the Komen Audited Financial reports MBCN calculated the total Public Support & Revenue raised for the same last 6 year period which totalled: $2,012,000,000 or about $2 Billlion dollars. 36 million for metastatic research as a % of the total revenue raised = 1.7% (round up to 2%) In other words, $200 goes to metastatic research for every $10,000 raised by SGK.
Metastatic Research Funding: government sources
Danny Welch, PhD, a researcher on metastasis at University of Kansas Cancer Center (previously at University of Alabama) says only a few hundred scientists in the world are trying to understand the process: Its responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget. click here. see page 4. Quote is based on European studies and appeared originally in the Journal of European Cancer.
*
Metastatic Research Funding by Susan G. Komen Foundation
2012 ad campaign SGK states: In just the past six years, over $35 million in funding has been awarded to help interrogate why cancer spreads, discover which genes can suppress tumor growth, develop therapeutics to target metastasis and find ways to help the immune system fight metastasis.*
Using the Komen Audited Financial reports MBCN calculated the total Public Support & Revenue raised for the same last 6 year period which totalled: $2,012,000,000 or about $2 Billlion dollars. 36 million for metastatic research as a % of the total revenue raised = 1.7% (round up to 2%) In other words, $200 goes to metastatic research for every $10,000 raised by SGK.
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