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03-22-2009, 08:30 AM
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#1
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Member
Join Date: Jul 2007
Location: Surrey (UK)
Posts: 9
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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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03-22-2009, 08:48 AM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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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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03-22-2009, 11:41 AM
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#3
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Senior Member
Join Date: May 2006
Posts: 3,142
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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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03-22-2009, 06:01 PM
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#4
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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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.
__________________
Smile On!
Laurel
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
15 Years NED
I think I just might hang around awhile....
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03-22-2009, 09:16 PM
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#5
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Senior Member
Join Date: Mar 2009
Posts: 36
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your story is great! and YOU ARE GREAT TOO!
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03-23-2009, 12:14 PM
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#6
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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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
__________________
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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03-24-2009, 12:26 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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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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03-30-2009, 08:32 AM
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#8
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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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
__________________
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
Brain MRI - 3/2/09 Clean
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03-31-2009, 07:32 PM
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#9
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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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
__________________
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
Started Femara Sept. 2006
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04-01-2009, 04:20 PM
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#10
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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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.
__________________
Jackie07
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
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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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03-10-2011, 11:20 PM
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#11
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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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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03-11-2011, 05:09 AM
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#12
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Member
Join Date: Jul 2007
Location: Surrey (UK)
Posts: 9
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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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03-11-2011, 06:51 AM
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#13
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: 19 years and still going strong
Thank you for letting sharing with us.
Amelia
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03-11-2011, 07:15 AM
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#14
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Member
Join Date: Jan 2007
Posts: 23
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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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03-11-2011, 10:00 AM
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#15
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Member
Join Date: Jul 2007
Location: Surrey (UK)
Posts: 9
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Re: 19 years and still going strong
will pm you morgan.
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03-25-2011, 10:09 PM
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#16
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: 19 years and still going strong
Asahizuru:
Congrats to you on your 21st (?) anniversary.
__________________
Jackie07
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
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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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03-25-2011, 11:26 PM
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#17
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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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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03-30-2011, 08:31 AM
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#18
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Member
Join Date: Mar 2011
Location: South Jersey
Posts: 11
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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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