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Old 09-12-2013, 05:39 AM   #1
NEDenise
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Unhappy The Pink-tober Madness begins!

Friends,
Let the mad, Pink-tober message of awareness (rather than a CURE!!) begin!

This was in our very own cancer news feed.

Evidently, this October, Honey-baked Ham will be doing some very clever (and I'm sure well-intentioned) marketing.
Among other things, they will be swapping their trademark gold foil wrappers for Pink-tober ones.
One dollar of the price of each specially wrapped Pink-tober ham will go to the National Breast Cancer Foundation.
Sounds good...right?
I can feel the glow of research... a cure being found.
But, alas... there's always a catch.

The Pink-tober ham money...
all of it... will go toward "awareness and mammograms".
In the article, the chairman of the NBCF is actually quoted as saying,
"The key to surviving breast cancer is early diagnosis."

Really? Based on what evidence!?
Tell that to the Stage 0s and Stage 1s who find themselves fighting for their lives PDQ!
That's who's advocating for us?
I'm not saying mammograms are bad. But come on!

We're AWARE already!! Find a CURE!!
Thanks for letting me get that off my chest -
where my very "aware and regularly examined" breasts used to be!
Sheesh!
Denise
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Old 09-12-2013, 09:10 AM   #2
'lizbeth
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Re: The Pink-tober Madness begins!

NEDenise

I feel your pain. Still I didn't get the message of early detection. The pink campaign sends out the wrong message. I think most respond to the give us your money so that you can help others.

Somewhere in the message should be "Hey you, YES, YOU. MAKE AN APPOINTMENT FOR A MAMMOGRAM!

I saw money pouring in at the Relay for Life. I studied the ACS website trying to find the research the money was going to. it seemed pretty vague. ACS did list the number of studies and the funds going to breast cancer and "other" cancers. But what is being supported in breast cancer research I couldn't determine.

With the Pinks I don't recall seeing any Awareness being promoted just fundraising. Have you seen any ads asking folks to check their boobies? Or do we see ads promoting fundraising? Give or walk, not feel and squish boobies.
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Old 09-12-2013, 09:39 AM   #3
StephN
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Re: The Pink-tober Madness begins!

Yes, I am seeing the pink campaign on cereal boxes and foil, just to name a couple. That pink ribbon has gotten SO pervasive that the newspapers will have a full page of "pink" items to look for at the large grocery chains.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 09-12-2013, 10:36 AM   #4
SoCalGal
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Re: The Pink-tober Madness begins!

I freakin' HATE the pink, HATE pinktober, HATE the ribbon. It is all consumerism. Try to follow the pink donations, the actual amount donated is dismal!! :-)
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 09-12-2013, 11:58 PM   #5
BonnieR
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Re: The Pink-tober Madness begins!

And we all know that a nice honey baked ham is real healthy. Nothing lie a big dose of salt, fat and preservatives for the blood pressure and waistline. What hypocrites
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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 09-13-2013, 12:10 PM   #6
alicem
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Re: The Pink-tober Madness begins!

I agree with the October Pink Overload. I think the only time I purchased something through this kind of a campaign was when I really needed some batteries - in October. At the store, I had a choice between pink packaging and non-pink. I chose pink. Perhaps at least 1 penny went to breast cancer, maybe more, who knows. I will not buy into the typical pink marketing buzz unless I would make that purchase anyway.

I am proud to say that one my local Breast Cancer non-profits has come up with a unique way to combat this. They are encouraging everyone to give locally to them, instead of buying pink backpacks, perfume, etc. Here is the link to their campaign, "LOCALLY PINK":

http://www.bcrc.org/events/locally-pink-/

This organization, The Breast Cancer Resource Center, provided me with my own Patient Navigator as I walked my cancer path. They had a library full of resources so I didn't have to break the bank at the local book store. They have support groups for everyone from people like me to caregivers, to young women (Pink Ribbon Cowgirls), and even Stage IV (the IV League). While they are not doing anything towards finding a cure (although they send reps to the SABCS every year to be up on the newest and latest), they are doing things to make a difference in those dealing with the disease right now. I love them!!!!

Perhaps some of you have similar organizations in your community that could adopt a similar program. We need to spread the word to those inclined to "do something" to look to their local community instead of Corporate America.
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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Old 09-13-2013, 01:20 PM   #7
yanyan
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Re: The Pink-tober Madness begins!

Very annoyed by "breastcancer awareness" posts showing half naked women covering their breasts. Its like asking people not to DUI showing how happy those people are when they are " under influence". How about using models who have had mastectomies in real life? Only do peoople get to see the real ugly side of breast cancer will they know how important early detection is !

Pink is not my color !
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 09-13-2013, 02:29 PM   #8
BonnieR
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Re: The Pink-tober Madness begins!

I'll add my distaste for groups that put on fund raisers to "save boobs" or "ta tas" and other terms that trivialize the situation
__________________
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 09-14-2013, 06:21 AM   #9
JillaryJill
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Re: The Pink-tober Madness begins!

I was just watching my local news and there is a $32.00 per table fashion show, all of the fashions are pink (gag me). It is a fundraiser for local women that are in treatment to help with costs etc. Although this cause supports the local community and I appreciate the efforts of everyone involved, the "pink thing" just kills me. I am in the marketing business...wouldn't battle fatiques be a better fashion representation of a breast cancer diagnosis? Do we feel all pink and feminine when we are diagnosed...or do we rear up like soldiers and fight for our lives, while we feel insecure about our futures, get body parts severed off, and get nuked with toxic chemicals? Why not break out a collection of leather boots & jackets, wool jackets, khaki pants? The lack of originality is astounding...the pink bandwagon continues.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 09-14-2013, 07:40 AM   #10
karen z
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Re: The Pink-tober Madness begins!

AliceM........good idea !
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Old 09-14-2013, 10:20 AM   #11
Mtngrl
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Re: The Pink-tober Madness begins!

Somehow this year I am not as worked up as in the past. I'm not sure why. I'm just as fed up with turning a public health problem into a pink popularity contest. (September is ovarian cancer awareness month. Not seeing a whole lot of teal around).

The worst thing about all the triumph and hope is that the 40,000 people a year who die from it in the US get erased. They're an embarrassment. Or they did something "wrong."

But, still, other things are grabbing my attention more firmly. Maybe I've been in this "club" long enough to expand my vision.

My hat's off to those who push for Cure and Prevention. And if I ever have money to donate again, I'll be sure to choose organizations that do that.
__________________
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 09-14-2013, 02:35 PM   #12
Coux92
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Re: The Pink-tober Madness begins!

I had an imeadiate aversion to pink the moment I was diagnosed!
__________________
3/11/13- normal mammo and US
4/30/13 Found pea sized lump while showering
5/10/13 core bx
5/15/13 dx IDC 1CM,
5/20/13 BRAC 1&2 neg
5/28/13 lumpectomy and SNB, ER/PR/Her-2+, Nodes neg,positive margins
6/13/13 revision of margins . Now clear
6/26/13 first TCH
Chemo Ninja~kutaki Zika Zukuchiri
10/18/13-Bx of calcification-neg whew
11/7/13 Started Radiation.
01/2014- Started Tamoxifen
06/09/14-Steriotactic BX left breast calcification-Benign
06/18/2014-completed one year of Herceptin!
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Old 09-14-2013, 03:06 PM   #13
Mtngrl
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Re: The Pink-tober Madness begins!

Let me just say, for the record, that it's not at all clear that "early detection saves lives." If they could really tell which cancers were dangerous and which were not, that might be true. But by shifting the focus from (a) prevention (and I mean efforts to find out what's causing it and eliminate the causes--such as the soup of industrial pollutants that we all soak up every day) and (b) cure to "Let's find out you have it and do our standard 'slash, burn and poison' on everyone and, oh, by the way, we'll make billions of dollars on routine screening" I am not going to advocate everyone getting mammograms every year from age 40 on. Lots of false positives. Lots of false negatives. Lots of money to be made scaring people into thinking they have a higher risk of getting this disease than they really do (and then duping them into thinking early detection = cure.) The fact is, about 30% of people diagnosed and treated at a lower stage progress to Stage IV, and about 10% are Stage IV at diagnosis. Those are not particularly good survival statistics. I do not believe you can consider any breast cancer curable. We need to learn what causes metastasis and how to stop it. Then we can all go "racing for the cure" to make sure everyone gets that--a vaccine or a pill or whatever.

The gold standard in cancer is PREVENTION. Lung cancer rates have plummeted along with rates of smoking. Stomach cancer is almost a thing of the past now that we have refrigeration and antibiotics. Cervical cancer in women and throat cancer in men is now preventable with an HPV vaccine. That's what we need.

We know people--dear, beloved, sorely missed sisters on this board--who were diagnosed and treated at Stage 0 and died anyway. We'll never know how many were diagnosed "early" and went through all the trauma of treatment who would not have died if it had been found later, when they were symptomatic. A short time back an "accidental" pairing of matched populations in Europe showed NO difference in overall survival between starting routine screening early and starting it later. OTOH, it might make all the difference for an individual. At this time, there is no way to tell.

I have a friend who found her own enlarged axillary lymph node ONE MONTH after a "clear" mammogram. I have another friend who has a similar story. They are both Stage IV. I was maybe a little behind in my mammo schedule (due to insurance/budget concerns) but not all that far behind, and my tumor would have been Stage II if not for those pesky mets they found at diagnosis. So spare me the "early detection saves lives" mantra. You can't prove it.
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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 09-15-2013, 06:54 AM   #14
PinkGirl
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Cool Re: The Pink-tober Madness begins!

Remember ... you can always trust a pink troll ... it's
obvious from my eyes ...
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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

My Photo Album
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Old 09-15-2013, 12:34 PM   #15
NEDenise
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Re: The Pink-tober Madness begins!

Pink
Though you are of course exceptionally wonderful... I have found trolls of all sorts to be a generally pleasant lot.

And, for the record... I like pink. I look good in it.
I just want the lion's share of the pink-generated money to go toward curing us!
Denise
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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 09-15-2013, 04:32 PM   #16
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Re: The Pink-tober Madness begins!

Here here Denise! I know mammagrams find a lot of breast cancers early but... I could have 100 and it still would of missed mine. The cure is the only way we end this thing!
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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 09-15-2013, 07:45 PM   #17
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Re: The Pink-tober Madness begins!

I agree...a cure is the only way, and the money needs to go towards research for a cure. So frustrating.
The day my breast cancer was diagnosed, the doctor said "You caught it early, and I know its upsetting news to hear, but you are going to be just fine." Huh.
I didn't even know there were different types of breast cancer until I was diagnosed. I had never even heard of HER2 or triple negative.
People need to know these things. They need to know its not always an easy cure like we see these celebrities going on about...I mean really, are they implying that I am stage IV because I didn't get mammograms? lol Well, I did.
If everyone does not know by now to do self breast exams and get their mammograms, they must live under a rock...
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 09-15-2013, 10:39 PM   #18
CarolineC
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Re: The Pink-tober Madness begins!

How about this commercial for Pink Lemonade energy drink. https://www.youtube.com/watch?v=na-RNv2v5io

It's unbelievable how this stuff has not been regulated or taken off the market. It's like telling a smoker to buy cigarettes. I think these drinks are adding to the problem of stimulating our already exhausted adrenals.

Denise, I too like pink, but I absolutely cringe when I see the pink bombardment. It was especially hard in Oct of 2011 when I was diagnosed with the sternal metastasis and was VERY aware that I had breast cancer, to go into the stores without feeling like I wanted to cry. Not enough funds are going into research for metastatic breast cancer and too many people are making money off our hardships.
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Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
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Old 09-15-2013, 11:00 PM   #19
KaiM
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Re: The Pink-tober Madness begins!

Well, this is my third pink-tober with metastatic breast cancer (I was one of the 10% that is stage IV from the get go). I have to admit I was much more worked up about it last year. While I agree that most of the marketing is misleading and the monies that ARE allocated toward BC are not spent on the most effective channels (hello...CURE) I don't have the anger this year that I did last year. Early detection and mammograms wouldn't have helped me. (I had several breast exams during my pregnancy and was too young to have regular mammograms and yet I had stage IV cancer just three months after I gave birth.) Yet, if a consumer wants to buy a pack of pink toilet paper, and $.50 of that is going to go toward BC programs, well, that's $.50 we didn't have to begin with. Yes, I agree the imagery is appalling, but I feel that imagery is also one of the reasons BC gets so much attention. (I dont think pictures of my mastectomy would sell well) And my hope is that all this attention will continue to keep BC in the forefront of peoples mind and that may push research for new and better drugs and one day a cure. Maybe this is a far stretch, but I need to believe.

I know this is probably not a popular view here, and being a metster myself I totally get the disgust, but I'm just trying to look at things a bit differently this year. Trying to see the silver lining, trying really hard.
__________________
9/11 - dx 3 mnths after giving birth to my 2nd child. (not a clogged milk duct) ER/PR- HER2+++
10/11 - Initially staged at 2b after unilateral mastectomy
11/11 - CT scan 4 weeks later found spots on bones and liver (crap!) Stage 4
12/11 - starting TCH
5/12 - STABLE. stoping TCH after 6 months and continuing Herceptin with Tykerb and Xgeva
8/12 - STABLE, but I'm calling it NED because all they see is bone scaring!
11/12 - STABLE
2/13 - STABLE
6/13 - STABLE
9/13 - STABLE
12/13 - STABLE
3/14 - STABLE
6/14 - STABLE
9/14 - STABLE
12/14 - STABLE
...Continue Herceptin and daily Tykerb and scans every 4 months
1/16 - STABLE
11/18 - Five level spinal fusion from collapsing vertebrae due to spinal Mets/radiation
12/19 - STABLE
Mom to Audrey (12 yrs) and Hudson (8)

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Old 09-18-2013, 11:43 AM   #20
'lizbeth
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Re: The Pink-tober Madness begins!

Giant bra draws curious looks; artist hopes ArtPrize entry also raises breast cancer awareness Catherine Smith-Brzeczkiewicz of Mt. Morris stands in front of her ArtPrize entry titled "Embracing Strength and Grace," on Monday, September 16, 2013, in front of the American Cancer Society Hope Lodge on Jefferson Avenue SE. Smith-Brzeczkiewicz designed the 24 ft. wide by 11 ft. bra to raise awareness for breast cancer and as a tribute to her mom, who passed away in 2012. (Emily Zoladz | MLive.com)
Emily Zoladz | ezoladz@mlive.com



GRAND RAPIDS, MI - Catherine Smith-Brzeczkiewicz drew a lot of stares and double-takes Monday, Sept. 15, as she installed her ArtPrize entry – a giant pink-and-white, polka-dot bra.
Smith-Brzeczkiewicz, a drapery maker from Mt. Morris, created the bra in honor of her mother’s battle with breast cancer. The 24-by-11-foot fabric sculpture is displayed on the north side of the American Cancer Society’s Hope Lodge, 129 Jefferson Ave. SE, in Grand Rapids.
“I’ve never done anything this huge before,” Smith-Brzeczkiewicz said. “It’s amazing. It has a whole lot of meaning for me.”
Her entry, titled Embracing with Strength & Grace, will remain on display throughout ArtPrize, which runs Sept. 18 to Oct. 6. The public is invited to a reception for the artist at Hope Lodge from 5 to 7 p.m. Thursday, Sept. 19.
Smith-Brzeczkiewicz, a native of Saginaw, has made custom window treatments for 35 years through her business, Catherine’s Custom Drapes, in Mt. Morris, near Flint. Her mother survived 34 years after she was diagnosed with breast cancer. She died in February 2012 after the cancer spread to her brain.
“She was very patient and graceful and always had a positive outlook on life,” Smith Brzeczkiewicz said. “Cancer was not stopping her from living life to its fullest.”
Smith-Brzeczkiewicz also is a breast cancer survivor. She was diagnosed five years ago.
“The bra is a representation of what it means to make it through cancer,” she said. “It is big, shocking, overwhelming and its beauty represents the person facing it head on.”
She was encouraged to build the bra sculpture by her 34-year-old twin daughters, Casie and Kelly, who live in Grand Rapids. They are active in Bras Across the Grand, a cancer society event in October that raises awareness about breast cancer.
Although she had never made a giant fabric sculpture before, Smith-Brzeczkiewicz decided to give it a try. Like her daughters, she wants to raise awareness about breast cancer and generate funds for research.
“I’m so proud of my daughters and all the hard work they do,” she said.
The title of the piece is inspired by the way her mother faced her illness.
“She embraced cancer with strength, and she did it gracefully,” Smith-Brzeczkiewicz said.
After ArtPrize, the giant bra will be donated to the cancer society. It will be displayed at Bras Across the Grand on Oct. 19 at the Gillett Pedestrian Bridge near Ah-Nab-Awen Park in Grand Rapids.
On Oct. 26, it will be at Making Strides Against Breast Cancer of Flint.
Sue Thoms covers health care for MLive/The Grand Rapids Press. Email her at sthoms1@mlive.com or follow her on Twitter, Facebook or Google+.





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