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Old 10-16-2007, 04:56 AM   #1
Christine MH-UK
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Diagnosed high-risk in 1993 and no recurrence

Hi everybody,

I just wanted to say that four years ago today I was diagnosed with a high-risk breast cancer: er-, pr-, her2+, eight out of 19 nodes after pre-surgery chemo. Oh, and I had been diagnosed six months after having had a baby, which is also a very bad thing in terms of survival. The member of the surgical team tasked with giving me my results was optimistic until he realised that I had already had chemo (FEC which is good, but failed for me). When my husband asked my prognosis, the surgeon evaded the question and I didn't want to know anyway, since I knew the odds were dire. The only optimistic thing one nurse could think to say to me was that breast cancers as aggressive as mine always came back fast, so I would know sooner rather than later whether the treatment had worked! She mentioned that I might live to see my one-year old start school if I got on the herceptin trial, only to announce soon after that that trial was closed. Children start school at 4 in Britain, so I was devastated. Trying to keep optimistic, I once pointed out to my oncologist that at least I had a grade two cancer, only to have him respond back that my cancer was a grade two but it acted like a grade 3.

Fortunately after I had surgery my oncologist gave me taxotere, which was unusual in Britain at the time. I also started saving my money to go anywhere where there was an approved anti-her2 vaccine (which I optimistically thought would come out very soon), but it meant at least when the Hera results came out I had the funds to start late herceptin.

Four years on, I am still around despite the odds, with no sign that the cancer has come back. Because I had to go back into treatment late and became very tired on herceptin, I am just now getting everything back into order, but am doing well.

Of course, when I started my treatment back in October 2003 so much less was known about how to treat this type of cancer. I am amazed by the progress that has happened in the last four years. I hope that you have found this story encouraging.
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Old 11-03-2007, 05:24 PM   #2
rinaina
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Your story will definitely be inspirational to many and you keep on going girl!
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Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 11-05-2007, 09:15 PM   #3
Chelee
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Christine, Thanks so much for taking the time to share your very encouraging and inspirational story. I think its so important for the newly DX and even us that are down the road a little further to read stories like yours. You have done absolutely wonderful & gives us so much hope. Thanks again for sharing...its really appreciated.

Chelee
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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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Old 11-06-2007, 03:02 AM   #4
chrislmelb
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Great news Michelle. i am about the same boat and remember you from back then. i still keep my fingers crossed.
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Christine

DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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Old 11-13-2007, 11:50 PM   #5
mcgle
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Christine

Your story will give great hope to those newly embarking upon this horrible journey.

I am so pleased you will be able to watch your little one start school.

Mcgle (UK)
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Old 11-18-2007, 02:35 AM   #6
Joanne S
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Christine, I too, take my hat off to you for sharing your story. I wish you continued wellness. Your baby is probably going to school now?

Congratulations!!!
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Old 11-25-2007, 12:22 AM   #7
harrie
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Christine, VERY inspirational story. Thank you so much for sharing. I know you must be very busy with your little ones, but thanks so much for putting your story out there. It gives much hope and inspiration.
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 12-03-2007, 01:59 PM   #8
tricia keegan
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Thanks for posting this Christine which is very encouraging for all of us..congratulations and may you continue to prove your surgeon wrong in the future!!
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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
Stopped Arimidex July 2014- Restarted Arimidex for a further two years on the advice of my Onc.
2014 Normal Dexa scan
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Old 02-14-2008, 11:04 AM   #9
Mary Anne in TX
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Christine, thank you for taking time to share your amazing story with us! What great news! Have a great day!
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 07-16-2008, 03:11 PM   #10
Jackie07
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I know this thread is a bit old and I wasn't the one started it. Just thought I will post so more people can see it - especially the newly diagnosed.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 08-12-2008, 06:57 AM   #11
lmangino44
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Red face Thank you

I am in a very similar situation. Waiting for by scans to come back today. Hope I am as lucky as you. Thank you for your story.
dx 7-11-08
Mas 7-18-08
E/P- Her++
8/14 nodes pos
5cm tumor
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Old 08-29-2008, 05:40 AM   #12
Ursula
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Thank you, Christine

for telling your story, it encourages me a lot! With two little kids I also want to see them grow, so I wish you well and hope for the best in the future!
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Kind Regards,

Ursula

Diagnosed 05/07 at age 42
Ductal Invasive Carsinoma Gr III, Stage IIIB:
Primary tumor 35 mm, secondary 21 mm
Node positive 13/23
Er/Pr negative (15 % /15 %)
Her 2+++
Ki-67 80 %
Mastectomy and node evacuation (rt) 05/07
3 x Taxotere + Herceptin (9 weeks)
3 x CEF
6 x Neulasta during chemos
23 x rads
Celebra for joint and PMS pain
NED
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Old 09-23-2008, 02:02 AM   #13
Jinete789
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Christine just followed you here from UK!

Hi

Christine I have just found this post after your kind reply to me on breastcancercare website.

Your story is truly inspirational to the newly diagnosed such as myself. It is a shame that in the UK our BC forums don't contain such inspirational categories.

Pointing me to this website is also useful, as I know a couple of other people who have BC, but none are HER2+, and when I mentioned it have given me an "oh dear, you're even worse off than me" expression. Which scares me even more.

I was only diagnosed July this year, so haven't even started my Herceptin yet (pre-op chemo currently - yuk).

Thanks again Christine for posting your story, it holds out so much help for those of us earlier on the journey.
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Old 11-22-2008, 01:55 PM   #14
Christine MH-UK
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Hi folks,

Just wanted to say that it is now five years and I am still fine. I couldn't figure out how to edit the message line. Oh well.

Glad to hear that so many people have found it useful, both here and through private messages. It is always nice to know that my story has given someone hope.

I can't believe how far treatment has come in that time. My oncologist was great but I had to leap through so many hoops to get a half way decent treatment because so little was known about the proper way to treat this. I am so glad that things are much more straightforward and effective now for patients with primary her2-positive breast cancer.
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Old 11-24-2008, 05:58 AM   #15
schoolteacher
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Christine,

Congratulations on your five year mark. You give me hope.

Amelia
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Old 12-03-2008, 02:23 PM   #16
PORTER1
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Thanks you Christine for your words of encouragement. i was diagnosed in April 08. Congads on 5yr. that is such a blessing
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Old 09-07-2009, 04:00 PM   #17
Leslie304
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Re: Diagnosed high-risk four years ago and no recurrence

Thanks Christine for your encouraging post. I was diagnosed in April 09 and just weaving my way through all this! Did you ever get the HER2 vaccine? I'm very curious how many have, my onc has not mentioned it but maybe it is premature for me to be thinking about it. I'm still undergoing chemo and anxiously awaiting surgery! Get this stuff out of me! Did you do a bilateral mastectomy?
Thanks for the renewed hope and CONGRATULATIONS!
Leslie
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2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 09-07-2009, 09:18 PM   #18
ElaineM
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Wink Re: Diagnosed high-risk four years ago and no recurrence

Good for you. Keep up the good work. I am clapping and cheering for you !!!!!!!!
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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 09-08-2009, 03:03 AM   #19
Christine MH-UK
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Re: Diagnosed high-risk four years ago and no recurrence

Hello everyone,

Well, it is almost six years now. If I had known how long this thread was going to run, I would have put diagnosed October 2003 in the title.

I never did get the her2 vaccine nor did I get a bilateral mastectomy. They are still working on her2 vaccines, so these are only available experimentally even now. As for a bilateral mastectomy, it seemed to me that for my type contralateral recurrences were relatively infrequent and I can't imagine having two arms at risk of lymphedema.
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Old 09-09-2009, 12:19 PM   #20
schoolteacher
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Re: Diagnosed high-risk four years ago and no recurrence

Christine,

Thanks for the post. I hope one day I will be able to say this too.

Amelia
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