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Old 03-22-2009, 08:30 AM   #1
asahizuru
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19 years and still going strong

This is my first time of posting so I am hoping there isn't a limit on words!

I was dx back in 1990 at the age of 45. On an examination with my GP 'cos I was on HRT she noticed a mass on my left breast that I was totally unaware of. I had a mammogram - the mass was 5cm and malignant (IDC Stage 3). ER/PR (-). Back as far as 1990 there was little information so we tended not to ask too many questions. I had 6 rounds of MMM chemo (mitomycin, methotrexate, mitozantrone) and responded very well to it - the tumour shrunk with the first round. I then had 35 sessions of radiotherapy and at the end the tumour was no longer visible. Back then there was no surgery if the tumour was not visible any longer.

I was fine for 5 years, but noticed then the same breast was changing. This was obvious to me but sadly not so obvious to the oncologist and from my first seeking advice to dx was 14 very hard weeks. I had a mastectomy (ILC) but on the advice of the surgeon did not have the lymph nodes removed because there would be a high risk of lymphodema. 6mths later on a regular check I had small red bite-like spots. Fortunately my surgeon recognised them immediately as a recurrence and did 3 biopsies on the area. They needed to remove all the tissue covering that side of the chest wall and patch it with a large area from my stomach. The surgery went well, and I had 6 rounds of ECF (epirubicin, carboplatin & fluorouracil). The side effects weren't nice - but that's nothing new to most.

Again I lasted another 2 years until 1999 without incident then about 6 weeks after a clear mammogram I found a large lump in my right breast so had mastectomy and full node clearance (ILC & at all levels in lymph). The tumour was 7cm and growing fast. I had 8 rounds of taxotere (not usually given in UK for primary bc). Hospitalised once with neutropenic fever I did not enjoy my time on taxotere and often felt I wanted to give up. This was followed by 30 sessions of radiotherapy).

In 2002 I found numerous lymph nodes around my neck, jawline and collarbone. My onc adopted a wait and see attitude as I had used a lot of chemo options. Towards the end of 2002 I got sciatica in my leg and couldnt put any weight on it without awful pain so scans were the order of the day. I was found to have extensive bone mets in my skull, all areas of spine, collarbone, pelvis & hips. I started on pamidronate and xeloda but had to come off xeloda after 3 rounds as it wasnt working, and put onto Navelbine. This shrunk the lymph nodes, but after a few weeks they returned again. At that point my onc checked out the stored tissue from previous ops and it had been noted that I was her2+++ and haven't looked back since. The bone mets are stable, the swollen lymph nodes have behaved. It is thought that all my problems were down to her2 so I have been really thankful for herceptin and am starting my 6th year on it.

I have passed many milestones for which I am so thankful. Seeing my kids graduate, our 40th wedding anniversary, and becoming a senior citizen!

I look forward to getting to know some of you, and hope you find my story encouraging.

Asahizuru.
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Old 03-22-2009, 08:48 AM   #2
Ellie F
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What an inspiring story! Hope you don't mind me saying but even more so as like me you were treated in England. It seems like you had a committed oncologist who was prepared to keep trying.I think your story and that of other women on the board demonstrate that dire prognoses are not always true! I think you also captured that though not 'cured' you can still live a good and happy life. Praying that I am as blessed as you.Love Ellie
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Old 03-22-2009, 11:41 AM   #3
ElaineM
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Wink 19 years and still going

You are a great role model !! You certainly have the never give up attitude. That is great !! Congratulations and many more years of life on this planet to you !!
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12 years and counting
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Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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Old 03-22-2009, 06:01 PM   #4
Laurel
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Inspiring? Well, I'll say your story is INSPIRING! Thank you so much for posting. You story will help anyone who is wondering whether to try another protocol or to give up to chose treatment and LIFE. I am so happy you have fought on, and I thank you for posting your story.
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Smile On!
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Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
9 Years NED
I think I just might hang around awhile....

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Old 03-22-2009, 09:16 PM   #5
donalddonald
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your story is great! and YOU ARE GREAT TOO!
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Old 03-23-2009, 12:14 PM   #6
Believe51
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Very encouraging and I want to thank you for that. I want to welcome you to our wonderful family. Cannot wait to get to know you better too. Long journey with lots of milestones, I like it. Good for you.>>Believe51
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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,
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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 03-24-2009, 12:26 PM   #7
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Wow! Thank you for sharing your inspirational story with us. You have been through so much but I can tell from your post that your spirit is great! I am so happy that you continue to do well!

Lexi
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Old 03-30-2009, 08:32 AM   #8
Shobha
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Thank you so much for sharing such an inspiring story! It really is something to read how much you have gone through and how positive and brave you have been through all of it!

You give me so much hope!

May you be blessed with many many more anniversaries!

love,
shobha
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DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
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Old 03-31-2009, 07:32 PM   #9
Jean
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You are amazing! Just simply amazing....
Thank you for sharing your story, as it will show many to never give up....and I am so thankful that herceptin has entered our lives!

I send you strong hugs to a very strong Lady!
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
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Old 04-01-2009, 04:20 PM   #10
Jackie07
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That is so wonderful! Thank you for sharing. I've got 19 years also counting my first brain surgery Let's keep going.

ps. I am very thankful to read your posting just 1 day after my '3rd' breast cancer surgery (a biopsy). Thanks.
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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

Last edited by Jackie07; 03-23-2011 at 10:46 AM..
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Old 03-10-2011, 11:20 PM   #11
Trish
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Re: 19 years and still going strong

Thank you so much for sharing your story it certainly has given me encouragement. I look forward to hearing more from you,
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 03-11-2011, 05:09 AM   #12
asahizuru
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Re: 19 years and still going strong

Hi ArojelaGeop,

Sorry but I don't understand your post. Have you posted it in the wrong place?

Trish,

Thank you so much for your reply, and to all you others who have responded. I can't believe it is a whole year since I was on here. I am so busy on the UK board I admin, and it was getting a post from Trish that brought me back to say hi. Trish reading your bio it sounds like you have had a real tough time - I thought I had a lot of chemos but you have had so much - doesn't look like you ever got a break! I found that once I was put on herceptin I haven't so far needed any further chemos.

I am still here LOL. The pain has become an increasing problem and they discovered last year that it was not my bone mets (hips or spine) that were causing the problem. The latest MRI scan showed I had a soft tumour growing alongside my lumbar spine! wrapping itself around the nerves that exit there. I had 5 shots of rads to the area in the hope of controlling the tumour and subsequent mri have shown it has not grown any further but as it is almost a year since that I will be asking for a further mri. Love to you all xxx

asahizuru
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Old 03-11-2011, 06:51 AM   #13
schoolteacher
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Re: 19 years and still going strong

Thank you for letting sharing with us.

Amelia
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Old 03-11-2011, 07:15 AM   #14
Morgan
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Re: 19 years and still going strong

Hi, asahizuru

good to see that you are "still here" :-)

I'm from the UK and am just wondering what site you admin?

Thanks
Morgan
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Old 03-11-2011, 10:00 AM   #15
asahizuru
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Re: 19 years and still going strong

will pm you morgan.
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Old 03-25-2011, 10:09 PM   #16
Jackie07
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Re: 19 years and still going strong

Asahizuru:

Congrats to you on your 21st (?) anniversary.
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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

Last edited by Jackie07; 03-25-2011 at 10:17 PM..
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Old 03-25-2011, 11:26 PM   #17
Trish
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Re: 19 years and still going strong

Thanks Asahizuru. I'm hoping to have a chemo break for a while but staying on Herceptin, Abraxane and adding an anti hormonal.I hope things stay stable for you.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 03-30-2011, 08:31 AM   #18
fisch
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Re: 19 years and still going strong

Hi! I'm grateful to you for posting...I too am new to this site, and so happy I found it.

I was diagnosed in 2000 (age 39) with a 2.5 cm infiltrating ductal ca with 3/10 positive lymph nodes... ER-/PR "slightly" +, and HER2 +++. Left mastectomy, and the the AC/Taxotere process; however, Herceptin wasn't available at the time...I did undergo a right mastectomy as well as the surgeon was concerned about the risk of recurrence.

I've recently (over the last couple weeks) been experiencing pain in my thigh(s), and left hip...intermittent, but still nawing. I have an appointment with the oncologist next week...

Looking so forward to continuing to read inspiring posts such as yours...
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