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Old 10-03-2009, 06:21 PM   #1
alicem
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In Honor of Ed and Marie

Like many of you, I feel so helpless when it comes to helping Ed and Marie. Then it hit me, there is something small I can do, and all of you can as well. In America, October is Breast Cancer Awareness month, perhaps it is in Europe as well. Let's take advantage of this and spread the word that:
"Men can get Breast Cancer TOO"
Here is a link to a really great article on this topic:

http://www.pressandjournal.co.uk/Art...419710?UserKey=

I plan on sending this to everyone in my address book, as well as tell them about my good friend Marie and her wonderfully special man Ed. I hope you will do the same.

Let's save a life . . . in honor of Ed and Marie.

Love, Alice
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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 10-03-2009, 06:46 PM   #2
WolverineFan
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Re: In Honor of Ed and Marie

Great idea! I am on board!!
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Hayley
Oklahoma

3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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Old 10-03-2009, 11:57 PM   #3
Lien
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Re: In Honor of Ed and Marie

Here in the Netherlands I attended the Pink Ribbon Awards Gala, which was televised yesterday. They did portraits of several women who had breastcancer, and there was an item about a famous choreographer who was diagnosed with BC too. He told the audience how his doctor at first thought men couldn't get BC and how he was proved wrong. I was very pleased that this was broadcast on National TV, and that such a prominent artist was willing to talk about it.

I really liked the show, because all the women who's stories were told were photographed and one of the pictures won the annual Pink Ribbon award. Also, all these women were asked to select a song that had helped them get through the bad times. These songs were performed for them by famous Dutch singers. At the end of the show, the performers handed a bunch of flowers to the women, who were sitting front row.

I thought it was very well done. Usually these big shows focus on celebrities, but this time, the celebrities were paying hommage to breastcancer survivors.

My sister is an actress and singer, and she was invited. We went there together and we got a chance to talk to the press, saying that it's very important for all women to be familiar with their breasts, so they would notice any changes. I also said that breastcancer isn't a pink, frilly, disease; it can be devestating and scary. One of the newspapers quoted my 14 yr old son's words: "Mom, I think it's very important that you go to this show, but I'm so very glad that you don't have IT anymore." This illustrated the fact that cancer doesn't just affect the patients, it affects all their loved ones as well.

Love

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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Old 10-04-2009, 02:47 AM   #4
tricia keegan
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Re: In Honor of Ed and Marie

It's breastcancer month here in Ireland too, tomorrow I'm attending a launch of new breastcancer awareness booklet by Europa Donna Ireland and will certainly mention this.
Great idea !!
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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 10-04-2009, 02:49 AM   #5
tricia keegan
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Re: In Honor of Ed and Marie

The following message was posted on another site I frequent and am copying it here so more can see it-

Hello, my name is Jesse Brown and I'm a reporter for the University Daily Kansan (the student publication for the University of Kansas). Breast cancer hasn't affected my life heavily but I did lose an aunt to breast cancer. I always love hearing about cancer survivors stories or people currently battling them such as Lance Armstrong. Those people are fighters and one has to admire their strength. And I do. Currently, it's October and October is Breast Cancer Awareness Month. I want to do a story about men with breast cancer because usually, one associates women with breast cancer and I understand why. But I think it'd be interesting and informative to write and for people to read about that men could get breast cancer too. I was hoping some men with breast cancer, perhaps with ties to KU, would try to contact me so I could hear their stories and write about their struggles and accomplishments. I would appreciate any insight or help for me to get their story known, if they're willing. If anyone would like to contact me, please call me at [IMG]chrome://skype_ff_toolbar_win/content/cb_transparent_l.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/famfamfam/us.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/space.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/space.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/arrow.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/space.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/space.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/space.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/space.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/space.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/space.gif[/IMG][IMG]chrome://skype_ff_toolbar_win/content/space.gif[/IMG](81...[IMG]chrome://skype_ff_toolbar_win/content/cb_transparent_r.gif[/IMG] or email me at jbrown@kansan.com. Thank you.
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Tricia
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 10-04-2009, 05:26 AM   #6
Believe51
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Re: In Honor of Ed and Marie

Thank you again Alice for touching our hearts and for reaching out to our men. Sending Love>>Marie
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 10-04-2009, 10:29 AM   #7
WolverineFan
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Re: In Honor of Ed and Marie

Jacqueline...your post made me cry! What a beatuiful thing to do for survivors and to bring much needed awareness to men with breast cancer. Thanks so much for sharing.

Hayley
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Hayley
Oklahoma

3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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Old 10-04-2009, 11:43 AM   #8
suzan w
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Re: In Honor of Ed and Marie

great idea! spread the word. xo Suzan
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 10-04-2009, 01:18 PM   #9
ElaineM
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Wink Re: In Honor of Ed and Marie

See Believe's (Marie's) most recent post about Ed, the Mighty Oak. I would like to share it with all.
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ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 10-04-2009, 05:35 PM   #10
'lizbeth
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Re: In Honor of Ed and Marie

Let's call it "The Mighty Oak" campaign! This is a great idea.
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 10-06-2009, 03:58 AM   #11
Karen Wheel
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Re: In Honor of Ed and Marie

I second the motion for the MIGHTY OAK! I think this is a great idea. Too bad I'm in Italy (well, I love it here!) but I'm not there in the US to do lots this month in awareness. BUT I do try to do as much as I can to try to get awareness here in Italy - which seems to be few and far between!
Sending thoughts of health, energy and love!
Karen
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Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!


7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!

2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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