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01-13-2008, 02:02 PM
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#21
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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I was 34 er/pr- grade3 her+++
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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01-13-2008, 02:26 PM
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#22
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 25
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Hello,
I was dx @ 39, started mammo's at 35 yr, due to mother having BC. Had many calcifications in both breast, but was never told this was something to keep a eye on. 1st child at 31, 2nd at 34. Used birth control, but very little.
__________________
Pam (age 40)
bi-lat mastectomy no recons.
4 IDC along with 4 DCIS
no node involvement SNB (8 nodes removed)
Her2+++ FISH (all 4 primaries)
3 ER pos & 1 primary ER/PR pos
2 primaries Grade II other 2 Grade III
sizes of tumors 1st .8cm 2nd .7cm 3rd 1.2cm 4th .7cm
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01-13-2008, 05:11 PM
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#23
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Senior Member
Join Date: Oct 2005
Location: San Francisco, CA
Posts: 96
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Thanks everyone for replying to this thread..I am struck by looking at everyone's pathologies at how many of those under 40 at dx were er/pr neg. Does anyone know off the top of their head what the average distribution is across all bc? We can tally ours up after we get all the replies, but it looks higher than I suspected. Also as suspected, a high % of us seem to be grade 3.
To Margerie's question. I have 2 kids, both born over 10 years prior to my dx. I was on bc for the whole time between my kids and dx. Interestingly (or disturbingly depending on your perspective), I was taking the bc with an off label prescription until the Seasonale brand was released. My gyn prescribed me to take it so that I would only have my period 4x/year for the last 4 years because I had debilitating migranes whenever I got my period on the pill. The migrane was caused by withdrawl from the estrogen as I took the placebo. I am now super suspicious of this with regards to higher sustained estrogen levels in my body and my cancer, but I have nothing conclusive as to this. Did anyone else take their bc in this manner prior to being dx?
Hugs,
Patricia
__________________
age 37 @ dx 7/21/05: IDC 1.5cm, grade III, Stage 1c, ER /PR+, HER2+,
7/29/05: Partial Mastectomy
dx 8/15/05: Papillary Thyroid Cancer
9/15/05: Total Thyroidectomy
A/C X 4 DD, 11 weekly Taxol + Herceptin, + 9 mos Herceptin Alone, 36x Rads, Lupron, Aromasin
7/29/07: 2 years NED :)
8/6/07 Oopherectomy (Lupron no more! :-)
Aromasin & Estring plus Synthroid and supplements
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01-13-2008, 05:26 PM
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#24
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Senior Member
Join Date: Nov 2005
Posts: 943
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I Was 38 When Dx. Or Shall We Say Misdx. With Comedo Dcis High Grade, Hormonal Negative That Did Invade And Was Hormonal Negative And Her2 Positive.
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Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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01-13-2008, 06:08 PM
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#25
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Member
Join Date: Jul 2007
Location: Palm City, Florida
Posts: 8
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Hi Everyone.... I was 37 when I got my Dx. stage 1 er/pr ++/her 2 +++++++++./ off the charts/high-tested by fish test. No family history, took the brca1, brca2 genetic mutation test/negative. I have one son, 18 yrs. of age. Treatmeant of a/c and 33 radiation treatments, no herceptin/ as I have Mitral Valve Prolapse and a heart murmur, so I am in a clinical trial (double blinded placebo-study drug) 9 months into it.....I am on tamoxifen and just now in the last two weels I have been absolutley miserable with the hot flashes, if I
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01-13-2008, 06:08 PM
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#26
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Member
Join Date: Jul 2007
Location: Palm City, Florida
Posts: 8
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Hi Everyone.... I was 37 when I got my Dx. stage 1 er/pr ++/her 2 +++++++++./ off the charts/high-tested by fish test. No family history, took the brca1, brca2 genetic mutation test/negative. I have one son, 18 yrs. of age. Treatmeant of a/c and 33 radiation treatments, no herceptin/ as I have Mitral Valve Prolapse and a heart murmur, so I am in a clinical trial (double blinded placebo-study drug) 9 months into it.....I am on tamoxifen and just now in the last two weels I have been absolutley miserable with the hot flashes, if I would of
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01-13-2008, 06:10 PM
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#27
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Member
Join Date: Jul 2007
Location: Palm City, Florida
Posts: 8
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known it was going to get so bad I would of done the oophrectomy/ or at least the lupron injections, which I have and can administer myself, as I am a medical assistant, for 16 years.
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01-13-2008, 06:13 PM
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#28
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Member
Join Date: Jul 2007
Location: Palm City, Florida
Posts: 8
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Hi Everyone.... I was 37 when I got my Dx. stage 1 er/pr ++/her 2 +++++++++./ off the charts/high-tested by fish test. No family history, took the brca1, brca2 genetic mutation test/negative. I have one son, 18 yrs. of age. Treatmeant of a/c and 33 radiation treatments, no herceptin/ as I have Mitral Valve Prolapse and a heart murmur, so I am in a clinical trial (double blinded placebo-study drug) 9 months into it.....I am on tamoxifen and just now in the last two weels I have been absolutley miserable with the hot flashes, if I would of known they were going to get so bad, or so much worse, I would of had the oophrectomy, ar at least the lupron injections, which i have 2- I can inject myself, as I am a MEDICAL ASSISTANT!!!! MUCH LOVE, REBECCA
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01-13-2008, 09:50 PM
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#29
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Senior Member
Join Date: Jun 2006
Location: Grand Terrace, Southern California
Posts: 114
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I was 27 y.o. April 15, 1997.
Rendi
__________________
04/97- breast bx. diagnosis breast cancer.
05/97- radical mastectomy; 5cm tumor & 11 lymph nodes.
10/97- City of Hope, high dose chemotherapy.
11/97- 36 radiation therapy.
01/98- NED; tamoxifen.
02/02- breast reconstruction.
08/04- recurrence; mets to rt lung; thoracentesis; femara.
09/04- thoracentesis; ER/PR +, Her2+++.
10/04- total abdominal hysterectomy.
02/06- mets to 9th rib; monthly zometa; arimidex.
06/06- medi port insert; weekly herceptin.
10/06- 3 weeks herceptin treatment.
02/07- mets to liver; arimidex
11/07-liver clear
02/08-chemo taxol/herceptin weekly treatment
12/08-taxol not working
01/09-navelbine/herceptin weelky
03/09-navelbine not working
04/09-xeloda/tykerb
09/09-30 radation to neck; xeloda/tykerb not working
11/09-Gemzar/herceptin weekly
04/10-tykerb/herceptin weekly
06/10-cancer spread to left lung;stop treatment; tap
07/10-right lung collasps; TDM1
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01-13-2008, 10:39 PM
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#30
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Senior Member
Join Date: Dec 2005
Location: Illinois
Posts: 327
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Yep, 28... Here is mine.
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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01-14-2008, 05:50 AM
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#31
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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I was smack on 40 when I experienced unilateral bleeding from my left nipple which prompted a mirco-dutectomy to remove the bleeding duct - six months later I was dx'd with a largish tumour and 6 nodes. I know you wanted under 40's - I actually believe the bleeding was prompted by vascular invasion by the tumour, which was not properly diagnosed at the time of the nipple bleed (because everyone was looking for dcis in the duct), and that the tumour had been growing for some time but not detected because the density of my breasts tricked the US and mammogram. Comparison of old mammograms shows an "apical mass" that showed on later mammogram and which turned out to be cancer, but wasn't picked up when the film was first reviewed.
So...I am counting myself in to having cancer well under 40 but not being diagnosed till after 40!
Had my daughter in Jan 2002, at aged 37.
I sometimes wonder about the number of women with her2+ cancer and smallish children - sometimes I wonder whether perhaps the growth factors that are generated in pregnancy and post-natally (eg to support breastfeeding) could play a role? This is such a hard thing to wonder about.
(Even if that were/is a contributing factor, I would not return my daughter for anything in the world).
Belinda
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Belinda
- Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
- Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
- May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
- March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
- Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
- January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
- Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
- Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
- ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
- Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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01-14-2008, 06:32 AM
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#32
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Senior Member
Join Date: Dec 2006
Posts: 415
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Dx 33 yo - 5/17/02
Left - IDC, er-/pr-,her2+++, and
Stage IV - liver mets
Lumpectomy, 12/12+ nodes
(Navelbine/Herceptin)+(Taxol +Clinical Trial drug)+(Taxol + Herceptin)
=49 wks until NED
NED x 1 yr,
9/04 -1st recurrence - single liver met
On/Off Taxol+Herceptin + RFA + TCH for 1yr
Liver resection 12/05 - Liver NED since then!
Recurrence to L breast, 8 wks after Liver resection -
1cm invasive nodule + extensive DCIS,
3/06 - excisional biopsy of invasive node, then watch & wait dcis
12/06 - L skin sparing mastectomy + reconstruction (3/07 & 8/07)
9/07 - recurrence to supraclav node
Gemzar + herceptin x 4 cycles thus far...
89 weeks of chemotherapies to date, not including solo Herceptin
12/31/07 - PET scan says "NED!!!"
2 cycles Gemzar/Herceptin to go!!!
Keep the Faith, everyone!
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01-14-2008, 09:26 AM
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#33
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Senior Member
Join Date: Nov 2006
Location: West Virginia
Posts: 105
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Dx at 36 yo, er<10% (technically negative)/pr-, her2+ grade 3 with 1.5 cm IDC L breast, found DCIS and LCIS in large portion of L breast with mastectomy pathology. There definitely seems to be a trend here. I had my children and 22, 24, and 28 yo and was only on BC for 6 months and became pregnant with my last child while taking it. 6 weeks of herceptin left and I opted not to take tamoxifen, against my doctor's advice
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01-14-2008, 03:44 PM
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#34
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Senior Member
Join Date: Feb 2006
Location: Watkinsville, Georgia
Posts: 356
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Hi ~ I was 36 when diagnosed...had my first child at 27, 2nd at 29, third at 35...no birth control pills. ER/PR -; Her2+++...
Had HUGE problems nursing with 3rd baby...dah...cancer in there and no-one found it. Treated for mastitus and other "breast feeding issues." Finally diagnosed after weaning and insisting that it wasn't a clogged milk duct!
But now 41! Yeah!
Hugs ~ 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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01-14-2008, 04:52 PM
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#35
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Senior Member
Join Date: Sep 2005
Location: Simi Valley, CA
Posts: 94
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38 here, er/pr- her2+++ Grade 3, stage 3a
__________________
Jen
DX 10/04 IDC Grade 3
ER/PR-, Her2+++
4/20+ Lymph nodes
Stage 3a
Age 38, CA
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01-15-2008, 08:19 PM
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#36
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Senior Member
Join Date: Jul 2006
Location: Southern California
Posts: 30
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I was 37, brca negative. On the pill for ~8 years before having kids at 28 and 30.
__________________
Stage IIb, dx 12-26-05, age 37
Lumpectomy 1-4-06, 1.1 cm idc
3/19 pos. nodes (sentinel node was neg.)
ER +, PR +, Her2 +
TCH, radiation, Lupron/Aromasin
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01-21-2008, 08:22 AM
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#37
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Senior Member
Join Date: May 2007
Location: Northern Michigan
Posts: 68
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I was 39 at dx
__________________
Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda
Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!
Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27
Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
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01-21-2008, 08:40 AM
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#38
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Senior Member
Join Date: Aug 2006
Location: PA
Posts: 188
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I was 37 years young.... The rest is in my signature
__________________
Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
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01-21-2008, 10:46 AM
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#39
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Senior Member
Join Date: Nov 2007
Location: Brentwood, CA
Posts: 76
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hormone positive and Her2
Dr. Slamon, one of the Herceptin developers) told me that Her2 cancers tend to be hormone negative or low hormone positive. I am a triple positve but he says I am mildly estrogen postive and low PR positive. He told me to try tamox but he didn't think it would help me very much as HER2 is driving my cancer, not hormones. I have been tamox since Nov. and am not having a hard time with it.
__________________
Janelle
Diagnosed October 2006 at age 37 wtih grade 3 IDC and high grade DCIS
Stage 1c triple positive, no node involvement but
vascular invasion
multifocal disease
Lumpectomy November, 2006
A/C every 3 weeks (started Jan., 2007 and finished March 2007); followed weekly Taxol (finished June 2007) concurrent with Herceptin (finished March 2008);
Bilateral Mast with immediate recon in Sept 2007; finished recon Dec. 2007
Started 5 years of tamoxifen Nov. 2007; started peptide vaccine clinical trial at MD Anderson October 2008 and finished active part of trial in April 2009 (monthly injections of AE37 peptitde (HLA type specific) with GM-CSF or GM-CSF alone depending on if I was in experimental or control group); started Zometa infusions June 25, 2009- 4mg every 6 months for 3 years (taking it "off-label" to try to prevent mets)
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01-21-2008, 11:31 AM
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#40
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Janelle
What percent ER and PR are you?
__________________
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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