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Old 09-23-2008, 04:30 AM   #21
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I just saw your email. I wanted you to know that I was terrified also when I was told I was HER2/neu with overexpression, with three lymph nodes involved, and that I was hormone negative, and that my cancer was quite aggressive and was likely to return. I just celebrated five years in remission, since my surgery, the first week of August. Take heart from that and know it is possible to beat this disease and live many years. I just had CT scans and bone scans done that didn't show any sign of return.
Each day is a gift of sweet sweet time. I am STILL learning to not have moments of fear. After all, I am human.
I suffer long term side effects of nerve damage(I have severe nerve endings pain that causes me agony) to my arms, legs, and groin area(called Neuropathy) from Taxotere, one of the chemo drugs they gave me, post surgery. I go around singing "I can do all things, through Christ, who give me my strength". It helps me when my pain gets worse and I am weary from coping with high end type pain. I have lots of family support and encouragement and that helps too.
Good luck to you as you go through your treatment. I will pray for you in this fight so many of us have faced. God bless you.
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Old 09-23-2008, 08:32 PM   #22
ElaineM
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Wink Long - Time Survivors

Hi,
I was diagnosed in January, 1999 and plan to live into my 90's. Many advances in breast cancer treatment were made since I was diagnosed that have helped me. Many more new medicines and treatments will be developed in the future, so if you take good care of yourself, are proactive and assertive with your docs you have a good chance of being a long term survivor. Stay positive !! Have hope.
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Peace,
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 09-24-2008, 03:33 AM   #23
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That's a wonderful attitude. Each year I survive,(5 years now), has brought me more confidence that all my surgery and chemo treatments DID destroy all those monster cancer cells.
Being a nurse and having doctors and medical professionals speak bluntly and not sugar coat my prognosis in the face
of an extremely aggessive cancer made me more realistic.
The good news is that I have learned to live in the present and find great joy in every experience and happy memory I make. I have become a survivor who assists other women going through surgery and chemo whenever I am asked or see the need. I am also educating oher survivors suffering long term side effects to seek treatment from their doctors.
I don't know 100% I'll live to age 90. But, I am alive in the present. I'll take that and live with gusto.
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Old 09-25-2008, 07:51 PM   #24
Gabrielle
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Almost 9 years completed

Hi Friends,

Just wanted to say I've completed almost 9 years. Still NED. Hang in there.

-Gabrielle
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Old 09-30-2008, 08:21 AM   #25
lkc Gumby
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Hi Ladies,
Just wanted to add my story for the new girls. I ws dxed May 05.
Stage IIIC, 12 out of 14 pos nodes ( 2 nodes completely replaced by tumor ) primary tumor2 cm + , No clear surgical margins after final MRM,,lymph & vasc invasion, IDC, with lobular involvement and Pagets! oh yeah ER/PR Negative, grade 2 -3 , AND her postive!!! Blah..blah.. blah...
I had a prop. LMM, which showed atypia, and hyperplasia.

Fast forward to today -3.5 yrs later. I have No evidence of disease, I have yrly PETS, I had bilateral recon ( implants) back in 2006, and have gotten my life back pretty much to normal. You will too. It's a hard road, but doable.
God bless, life is good.
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 09-30-2008, 08:40 AM   #26
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My goodness. You are indeed blessed that your treatment worked. I just hit the five year marker from my diagnosis date.
Still in remission. My oncologist told me yesterday I don't have to see her again for an entire year, unless I need her beforehand.
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Old 09-30-2008, 02:30 PM   #27
schoolteacher
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Ladies,

Thanks for all the positive stories. I go for my fourth chemo Thursday, and I really need to hear them.

Amelia
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Old 09-30-2008, 05:08 PM   #28
juanita
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made it 4 years in september and my rad onc told me i don't have to go back for a year! good luck to everyone!
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st 1, gr 3, er,pr-, her2 +,
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Old 09-30-2008, 05:20 PM   #29
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That is wonderful. I saw my oncologist yesterday too. I don't have to go back to see her for a whole year. Lets have a wonderful year. Mar
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Old 10-13-2008, 09:42 AM   #30
Soccermom
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Just saw this and wanted to say...Congrats !!!!Gumby...enjoy life!

Hugs,Marcia
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Old 10-27-2008, 03:32 PM   #31
Leah
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long term survivors

This is my 12th year living with bc.
I'm usually not on these boards anymore but someone private messaged me so i started reading. I do now have stage lV and am getting treatment, but have been for several years. It isn't 'normal' but it is my normal now.
Seems I will be around a long time still.
Leah
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Old 10-27-2008, 06:10 PM   #32
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I was just popping in to say I sure hope you are hanging tough and not too sick. God bless.
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Old 10-27-2008, 06:40 PM   #33
Leah
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Have you tried any of the medications available for nerve pain ie. neurontin, or just regular pain meds? I don't think you should have to 'deal' with the long term side effects of cancer treatment. There is help available.
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Old 11-15-2008, 11:19 AM   #34
Christine
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Red face I've Been Wondering How You Are!!???

hi!, long time friend. I have been thinking of you, but was affraid to call, to hear another dooms day report from you. Nice to hear you are more positive about your survival and keeping your communication on our support group message board.
For me..........it is sooooo nice to hice to hear from you. Hope the other side of your family life is getting good results.
Call me if you wish.
Hugs, Christine
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1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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Old 02-05-2009, 11:09 PM   #35
pmm10414
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Thank you so much for this site. You read so much and much of it is so scary. I started treatment at just had 3d AC treatment today. Already schedule for Taxol and Herceptin prior to surgury. You long time survivors give great home. Thanks for this site.
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Old 02-06-2009, 05:02 AM   #36
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I just read your posted message. I stopped right then and prayed for you, asking God to be ever near and give you strength as you weather the side effects of yesterday's chemo treatment. you have great courage and will get through this storm. Let me know how you are doing, when possible. Mar
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Old 02-06-2009, 06:07 AM   #37
pmm10414
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I am doing OK this morning except feeling a little nausea more than last time. I hope it will only be a few day. I ended up staying in quite late. I pray every night that the Lord above willl help heal me and make me strong to get through all this.
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PATTY
FOUND MY TUMOR IN 11/08 AFTER CLEAR MAMMOGRAM ON 5/31/08
DX 12/09/2008 STAGE II
CHANGED TO STAGE IIIA AFTER MRI
SURGURY FOR TWO PET SCAN NODES IN CHEST NEGATIVE (DEC08)
AC (4 COMPLETE MAR09)
TAXOL HERCEPTIN (12 TREATMENTS COMPLETE IN JUN09 )
SURGERY IN JUN09 - COMPLETE RESPONSE (BOTH BREASTS NEG AND 9/9 LYMPH NODES NEG) NED
HERCEPTIN RESTARTED IN JUL09 WEEKLY UNTIL JUL10
PET SCAN - NEGATIVE DEC11 AND AUG09
BRAC - NEGATIVE SEP09
28 RADS COMPLETE SEP09
BONE SCAN - NEGATIVE MAR10
PET SCAN - NEGATIVE DEC11
PET SCAN - SARCOIDOSIS OCT11 thought cancer was back thank The Lord it is not they think!!!!!!
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Old 02-06-2009, 11:23 AM   #38
schoolteacher
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Patty,

I hope you are feeling better.

Amelia
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Old 02-25-2009, 08:38 PM   #39
elcalabrese
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I guess I qualify as long term. I started Herceptin in March of 2002 and have remained stable.
el
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Old 04-02-2009, 08:21 AM   #40
asahizuru
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Hi LisaJ,

I posted my story in Profiles in Courage so I wont go into any detail here. I was dx 19 years ago Er/Pr neg and her2 positive. In UK herceptin was not available back then and I didnt get on to that until 2004. I had by then exhausted all available chemos and it was looking like I was heading for Phase1 trials. My onc then checked out my her2 status from previous tissue. For me it has been my miracle drug and I have had no further progression. My extensive bone mets are stable.

Asahizuru.
xxx
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