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Old 10-15-2011, 08:40 AM   #1
Mtngrl
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Metastatic Breast Cancer and Nancy Brinker

Thursday, October 13 was "National Metastatic Breast Cancer Awareness Day." Of the many essays and blog posts that I have seen in connection with the persistent lack of understanding of metastatic breast cancer that gave rise to the desire to set aside one day to focus on Stage 4, this open letter to Nancy Brinker, the founder of Susan B. Komen for the Cure Foundation, is my favorite: http://healthychange4you.blogspot.co...letter-to.html

Hope won't fix this. A positive attitude won't fix it. Elizabeth Edwards had hope, good medical care, and a positive attitude. She died three years after her breast cancer was found to have metastasized.

I do all I can to take care of my body, mind and spirit. I did that before I was diagnosed. I would like to think that doing more of that, or adding something else--another supplement, another spiritual practice, another kind of exercise--will put me in the 2 to 3% of people who achieve permanent remission after hitting Stage IV, but that is, essentially, magical thinking.

Stage IV breast cancer is incurable. Staging is an outmoded concept. Early detection is not really saving lives, it's just skewing the five year survival rate. We need a cure. An organization that has trademarked the phrase "for the cure," and has actually sued to enforce its ownership of that phrase, should be on the forefront of searching deliberately, systematically, and scientifically for understanding metastasis and learning how to stop it. Nancy Brinker recently said in an interview that she didn't think the cure would come from a laboratory. Huh?

She has a huge megaphone, and, for all the good she has done, she nevertheless misuses her position to create misconceptions and to promote both false complacency and false fear. It isn't deliberate. It's just an inevitable consequence of "cause marketing" and "activity based philanthropy." In a market-driven approach to solving public health problems, messages inevitably get distorted to serve the interests of the corporate sponsors. Sponsors want happy, celebratory, feel-good events and stories, so the mainstream version of "awareness" is false. Fewer women are going to get breast cancer than most people think, but far more women who do get it will die from it than most people realize.

I think this letter strikes a graceful balance between gratitude and confrontation. Demonizing Susan B. Komen for the Cure is counterproductive, but we can't let them have the last word on this either.
__________________
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 10-15-2011, 09:29 AM   #2
Ellie F
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Re: Metastatic Breast Cancer and Nancy Brinker

Hi
According to my onc the number of women (and especially young women) getting bc is increasing? I totally agree that we need a cure now!!
Ellie
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Old 10-15-2011, 10:16 AM   #3
rachelhmmd
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Re: Metastatic Breast Cancer and Nancy Brinker

I am not Stage 4, yet. But I know I may be one day. That letter so articulately expressed the problem.

Two years ago I participated in a Survivor Ceremony. While everyone else swayed to the song, I found myself getting angry. There was all this hoopla for longer term survivors, as if one should be applauded for being "lucky enough" to have a less aggressive tumor. Breast cancer is not one beast, but many; it is a very heterogeneous. We are not all in the same boat.

The week I was diagnosed with breast cancer, so too was a colleague of my husband's. We became fast friends. Her cancer was super aggressive, and within 5 months she was dead. She was a single mom, and left behind three teenaged kids with no plans in place. It was terrible and sitting in the ICU as she died was one of the hardest things I've ever done, especially given my extreme fears about my own mortality. After her death, I tried to process it in my breast cancer support group. I was shushed down, because others in the group found it too upsetting. They wanted to talk about knitting pink hats. It was ok to talk about lymphedema or side effects to chemo or types of reconstructive surgery or bone density. It was definitely NOT ok to talk about dying.

I agree that we women with breast cancer do ourselves the greatest disservice by focusing on the PINK and denying the BLACK. The real fight is curing metastatic illness, so that when it comes to us, our daughters, our sisters, it will not be our last enemy. I know that it is hard to face the real source of our terror, that we naturally employ denial, avoidance, and even reaction formation ("Let's look at the GIFTS cancer brings us...YIKES!). But all of that candy coating does't antidote the poison.
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Old 10-15-2011, 11:10 PM   #4
sarah
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Re: Metastatic Breast Cancer and Nancy Brinker

good letter and agree, money should be focused more on metatastic bc than 5%, that's far too little.
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Old 10-16-2011, 10:37 AM   #5
Catherine
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Re: Metastatic Breast Cancer and Nancy Brinker

Good post and great letter. I hope many will read.
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Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 10-16-2011, 11:08 AM   #6
ElaineM
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Wink Re: Metastatic Breast Cancer and Nancy Brinker

Yes. Good letter. I appreciate the opportunity to read it.
Does anybody really understand any disease unless they have it or someone very close to them has it?
People going through treatment for kidney disease, MS, heart disease, Diabeties,and other diseases understand the ups and downs of those diseases better than most people in the general population do. That is why in the thread about the movie Five I thought they should have consulted real people who are/were affected by breast cancer. Perhaps a few people with diseases should be on the boards of drug companies or the FDA too.
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12 years and counting
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Old 10-16-2011, 02:46 PM   #7
Mtngrl
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Re: Metastatic Breast Cancer and Nancy Brinker

I just read this article on Komen and the Dallas Cowboys: http://www.nytimes.com/2011/10/16/bu...pagewanted=all

It quotes the announcer at the game as saying "With early detection, your chance of survival is 98%." As the article goes on to point out further down, technically that's true--for five years. But leaving out that little detail makes it a lie. Without early detection, five year survival is still about 98%. All early detection does (for some people--and we don't know which ones) is increase the number of years they know they have breast cancer. Komen wrote the copy for the announcement, and later apologized for the "error." The article also says mammography has lowered the death rate. I'm not so sure that's true either.

I understand why people want to "accentuate the positive" and I actually do think the runs, walks, and so forth are helpful for survivors. They are moving, uplifting occasions. But metastasis is like a dirty secret--at the public events and fundraisers, and in general, but it shouldn't be.

Illness, disability and death are not pathological. Everyone will experience most of those, and we are all going to die. I'm in no hurry to check out, but I realize that as someone with Stage IV breast cancer I probably won't reach a normal lifespan and, barring either a miracle or some other really bad luck, I will die of breast cancer. The more I say that the less weird or frightening it sounds. We need to talk about it. Far from intimidating me or paralyzing me, the knowledge helps me make decisions about my life and how I will live it each day that I have.

Rachel, I'm so sorry you didn't get to talk to your support group about your friend's death. And what a shock that she died so fast. That's really sad, and scary. (And I'm so sorry for her three kids). I agree that we can't simply "think pink" and wish away the rest.

Of course I don't consider myself lucky to have been diagnosed at Stage IV, but I am lucky to have an in-person support group just for Stage IV moderated by a wise, funny, smart woman. My first visit to the group, not long after I was diagnosed, was pretty intense. Three people had just had medical emergencies. One had almost died, but her oncologist (who is also my oncologist) ordered some kind of Hail Mary Pass chemo combination and they beat the cancer back. One member has been living with HER-2 positive IBC for 11 years. When I got over the shocks to my consciousness I realized that the group is perfect for me. I'm not one to hide my head in the sand. I figure you can't really make good decisions unless you have complete information. And I also realized that since all three women had lived to tell the tale (and to fight another day), that the stories were "happy" in a sense.

In the group we can be completely honest with each other. Also, believe it or not, we laugh a lot. There are smart, funny, beautiful, women in the group who are full of life and who I'm glad to know. Of course that's true of this community too.

I'm glad I found you all.

Namaste.
__________________
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 10-16-2011, 02:58 PM   #8
tricia keegan
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Re: Metastatic Breast Cancer and Nancy Brinker

I think this is a wonderful letter, I moderate the Komen message boards and when I joined six years ago there was no mention of stage iv and if someone at that stage posted I noticed no one replied. I'm glad to say I had a direct input in beginning a stage iv forum for women who do land there so they have someone to discuss their fears with who undertands, if her2+ I direct them here! I think Nancy Brinker has done so much for bc as a whole but do agree more needs to be done now in research directed towards progression and will send this link on to someone in komen I know in the hope it helps a little.
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 10-16-2011, 05:07 PM   #9
Mtngrl
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Re: Metastatic Breast Cancer and Nancy Brinker

Tricia--Thank you for this information. I'm glad you are present in both boards. Thank you so much for advocating for stage iv concerns.
__________________
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 10-16-2011, 05:53 PM   #10
NEDenise
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Re: Metastatic Breast Cancer and Nancy Brinker

Amy,
I haven't even read the 'open letter' yet, but I am overwhelmed by the eloquence and emotion in your posts. Thank you so much for your openness in sharing this with all of us.
I've enjoyed (and agreed with) many of your posts since joining the forum, but this one is truly exceptional.
Keep fighting! The world needs women like you!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 10-16-2011, 07:45 PM   #11
Mtngrl
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Location: Denver, CO
Posts: 1,427
Re: Metastatic Breast Cancer and Nancy Brinker

Thank you, Denise.
__________________
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 10-16-2011, 10:58 PM   #12
Pray
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Re: Metastatic Breast Cancer and Nancy Brinker

Hi Amy,

I second what Denise had to say about you. You are amazing! I am so glad there are so many women on this site just like you! It sure would be nice to know one where I live.

Gods blessings to you.

Your Friend,

Nancy
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 10-17-2011, 08:41 AM   #13
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Re: Metastatic Breast Cancer and Nancy Brinker

Hi, Amy,
Thank you for taking the time to articulate your thoughts in a way that has so much meaning and understanding for all of us. When reading your message, I kept thinking...hurray... someone who is addressing the hard to talk about topics and facts, and has expressed it so well.

It seems that breast cancer is glossed over for the public and the real message and concern about this cancer gets lost because we tend to hide undesirable truths. It's a hard concept to balance. We don't want to sound negative, but yet at the same time people need to know and understand cancer's realities.

When I was diagnosed, I asked my onc what my survival chances were. He told me, but what I didn't realize until much later...sometime after chemo and when my brain started working again...was that he gave me a 5 year survival rate. If he told me "5 years," I do not recall it.

When Mrs. Edwards became stage 4, the news programs had on doctors and guests that were specialists in the breast cancer field, and it seemed that all of them skirted around the truth. It sounded like she was fine, and always would be.

Your message has been much appreciated.
__________________
Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 10-17-2011, 09:49 AM   #14
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Re: Metastatic Breast Cancer and Nancy Brinker

Thanks for making so much sense in this thread.

At the risk of being redundant, please consider the efforts of this nonprofit organization for working together to produce something real for breast cancer patients and to educate others:

http://www.affinityfilms.org/our_wor..._war/index.php

-AlaskaAngel
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 10-17-2011, 11:25 AM   #15
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Re: Metastatic Breast Cancer and Nancy Brinker

Amy~
Thank you so much for your voice & your eloquence!

When I was dx'd @33yo & Stage IV, I went to a couple of different support groups, but found that I was such an anomaly & regardless of how "supportive" the others were, there was definitely an underlying tone of resistance to explore & discuss the unique issues of a Stage IV patient, because no one wanted to cross that bridge if they didn't have to.
Stage IV disease is so different than early stage disease. There is no magical 5yr mark to celebrate. I live from scan to scan, knowing that from one 12week interval to the next, things could change dramatically. I've actually lost the capacity to project into the future, much past a couple of months, to make plans for holidays, visits, travel. I recently got a new cell phone and hesitated when they told me I had to sign a 2yr service contract to get the "sale price" of the phone.
Even a comment like "I hope I look that great when I'm 50 years old" is a luxurious assumption that just doesn't exist in my brain.
I find the commercialization of "The Pink Ribbon" has become so overbearing - especially in October. It's like everyone wants to keep the disease perception nice & tidy & even FUN! As much attention the Ellen DeGeneres Show brings to the disease & as much money that she raises to support the cause, I still feel like it's so oversimplified.
We need to be vigilant about putting this face of BC in the forefront of media and all the organizations that coordinate these big BC walks to really educate all the pink ribbon wearing supporters. But Stage IV disease doesn't have a very pretty "face"...
I don't know what the answer is, but so appreciate of this supportive & intelligent forum to "talk" about it.
As I've said on other threads, had I known that surviving WITH Stage IV disease for 9+yrs was a possibility, at the very least a goal that we could fight for, I might have been able to approach my survival a little differently.

Keeping the Faith~

Jessica
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Old 10-17-2011, 11:45 AM   #16
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Re: Metastatic Breast Cancer and Nancy Brinker

Well said,I totally agree.

Pia
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2003 age 34 pregnant with 2nd child Dx stage II
Er-/pr+ her2+++ grade 3 tumor 2.1cm 4 AC/4Taxol.No Herceptin .
2010 age 41 stage IV lung mets er+/pr+ her2+++ grade 3.On Herceptin only.
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Old 10-17-2011, 11:59 AM   #17
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Re: Metastatic Breast Cancer and Nancy Brinker

As an aside, it makes me cringe when people say, "I'm not stage IV yet."

Language has power and you don't want to open that door, trust me. I know you can't will a disease by language but people should not be so accepting of it. After my recent liver resection, I'm trying very hard to get back into "cancer-free" mode and to use language that reflects what I hope is the truth - that I'm cured.
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http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

Im beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now Im 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 10-17-2011, 04:38 PM   #18
rachelhmmd
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Re: Metastatic Breast Cancer and Nancy Brinker

Sorry for the language. I think it was my fear and maybe magical thinking (warding off) talking.
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Old 10-17-2011, 06:10 PM   #19
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Re: Metastatic Breast Cancer and Nancy Brinker

As a side note: Elizabeth Edwards fought a long, hard battle. But it should be known that she decided to end her treatments, much to the amazement and disappointment of her doctors. I think EE is used an example much too much. There were still many options out there for her.
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 10-17-2011, 08:56 PM   #20
CoolBreeze
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Posts: 562
Re: Metastatic Breast Cancer and Nancy Brinker

She did? I hadn't heard that! Is that in her book or how did you know?
__________________
http://butdoctorihatepink.com

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

Im beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now Im 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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