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11-05-2007, 10:28 PM
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#1
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Member
Join Date: Oct 2006
Posts: 13
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wondering
hi im not new but i finish my year herceptin in january i was stage1 1.7cm invasive mammery carcinoma grade 3 her2 and no nodes involved i was wondering has there been any people her2 that has not had reoccurence or am i a sitting duck i guess years ago people didnt know about her2 i know people who had bc and never seen it again but i am 35 that is why i am wondering if you know any people that has got to have a normal life again i hate this her2 stuff but i hear oh herceptin but does it really stop it
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11-06-2007, 12:53 AM
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#2
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Rhondat, Congratulations on finishing your year of herceptin. Although I know that can bring mixed emotions. You can be glad that your done, but also feel like your not doing anything to keep it from coming back.
But to answer your question...yes there are women here that have *not* had any recurrances. I am sure when they see your post they will be more then glad to say hi and tell you a bit about them. So no...you are not a sitting duck even though I know you feel that way at the present. These days even though your her2/neu so much has changed. The treatment for it has come a long way. Its hard at first but things will get back to normal. As we all say...a NEW normal...nothing is every the same after something like this. But you have lots to look forward too. Hang in there...
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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11-06-2007, 03:29 AM
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#3
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Senior Member
Join Date: Dec 2005
Location: virginia
Posts: 99
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"New Normal"
Rhondat,
Greetings ! Yes, Live well today.....today is the "present" that we have and find that " New Normal" for you. Was dx in May 2004 triple pos and NED to this point in time. More info under the member profile. Have learned so much from the Warriors here about the newest and powerful weapons that are available to our Her2 members. As well as how to fight, who to contact and what to use if there is a problem. So live it up, laugh a lot, love much and dance every chance you get. For me it means great times with grandsons and travels in the motor home! As for all that other *stuff*......as I tell my hyper doggie.....just "leave it"!!
Go for the Gold ! Hugs, Bonnie
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11-06-2007, 03:39 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Rhonda
Besides the fact that Herceptin has improved the odds, even before Herceptin, it is not a given you will recur - not at all. It is natural to wonder and worry, especially in the beginning years. I do and I am over 3 years out. You are not a time bomb and the odds are very much on your side. Enjoy every day but don't tire yourself out because you have 40+ years of enjoying.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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11-06-2007, 07:02 AM
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#5
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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I was Stage I. I believe I have an excellent chance of never having a recurrence. I agree with Becky-- you (we) are not a ticking time bomb. I am vigilant about my health, and I remind myself to be grateful for every day. I am celebrating two years after diagnosis, and a clear mammogram every year.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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11-06-2007, 08:01 AM
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#6
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Rhondat,
I know the impression you can get from reading the posts here is that everyone recurs, because we have so many members with mets that are posting. I think it is important to note that those with recurrences are overrepresented in our membership. Most of the people posting here are sharing information and support for primary therapy or for therapy for cancer that has progressed. There are many who have completed their initial treatments that are cancer free and no longer feel the need to connect with our community, and have moved on. So, it is less common to see early stage patients who have completed treatment and remain NED posting. That doesn't mean there isn't an army of them out there, waiting to induct you.
Best of luck to you,
Hopeful
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11-06-2007, 09:37 AM
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#7
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Well said Hopeful. Remember that Rhonda
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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11-06-2007, 10:13 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Rhonda...LOVE the name:)
I know what your feeling (I finished my last one 8/10/05), but it IS true what they say about eventually getting your life back. I once in a while think of it, but I know I've done and am doing (diet and exercise) everything I can to fight the beast. Heck, I'm TOO busy with church and my son's school (have to get a dress for the Msr. Alt dinner, The Womens Advent tea, I'm chairman for Breakfast w/ Santa and THEN there's work and school...cancer took too much time from me before, I'm too busy catching up Like Becky and the others have said, there is no guarantee, but is there EVER? BIG huggs. Take care and God bless.
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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11-06-2007, 01:23 PM
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#9
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Rhonda.
Well, I'm a her2 sister and am 2+ years out with no recurrence. I am banking on NOT having one and try to live each day as if it's my last. Not in a depressing kind of way, mind you, but in the knowledge that NONE of us know what our tomorrow's hold. Geez, for that matter, none of us know what the next hour holds. I wake each day thanking God for this day's good health - I ask Him to help me live it ALL for Him - to love and spread joy and peace wherever I go and TRY (with all capital letters most definitely) to leave all the worries about my tomorrow's with the One who's given me today. That all being said, does that mean I don't worry and get down about this "stuff" returning??? Unfortunately, I do. BUT, that does become less and less as time goes on. For today, I am NED and I try to concentrate on that fact each day. One day at a time. That is plenty.
God's Peace and healing to you dear one,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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11-06-2007, 01:53 PM
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#10
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Look at my signature.....go live your life! We are out there just like Becky said. I'm over the 4 year mark and working on year #5!
Peace ~ Ruth
__________________
[/SIGPIC]~~~~~~~~~~~~~~~~~~~~~~~~~~~
Diagnosed 6/03 nursing daughter
Dose dense A/C 4x
Modified rad mast 8/03
IDC; 3 cm; 10+/16 nodes; ER/PR-; Her2+++
Weekly taxol w/Herceptin (off label) 12x's
40 weeks Herceptin
Radiation 33x
Reconstruction w/ implants 05 & 07
NED
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11-06-2007, 06:04 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Rhonda, (love the name too!)
You do eventually get back to a more normal way of life, where every moment is not spent in worry. I am 2 1/2 years out from a IIIA dx and although health stays in the forefront of my thoughts, fear is no longer a major player. You have every reason to believe you will live life without cancer in your future.
There are many of us who have benefited from Herceptin and have very good prognosis---and you are one too.
Come here for information and suppport. There is no better place where you will be completely understood and supported.
My best to you,
(Another Rhonda)
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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11-06-2007, 06:34 PM
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#12
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Rhonda, I can relate to your feelings. I will have my last herceptin treatment in late December. When I think about it I get scared because while you are in treatment it is your saftey net. The closer I get to December though I have decided not to let this disease continue to rule my life. I too start each day with the attitude to live it like it was my last and have no regrets. I have a loving family and I will continue to thrive as will you. I am getting stronge everyday and am doing things I did prior to diagnosis. I like to say I am a work in progress as are you. Learn to enjoy life and remember if it does come back they have wonder drugs like herceptin and tykerb to keep us going. Stay strong and be well!
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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11-06-2007, 08:36 PM
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#13
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Member
Join Date: Oct 2006
Posts: 13
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rhonda bowen
hey i was also rhonda bowen twice thats weird huh my exhusband was a bowen
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11-06-2007, 08:50 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Rhonda,
I think we crossed paths before, maybe on another board?
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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