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View Poll Results: At what stage were you initially DX?
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2.17% |
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26 |
28.26% |
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28 |
30.43% |
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27 |
29.35% |
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9 |
9.78% |
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10-27-2011, 06:43 AM
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#21
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Member
Join Date: Oct 2010
Location: Alberta, Canada
Posts: 15
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Re: At what stage were you initially DX?
Diagnosed at 2b in August 2010. Er/pr- her2+. 2.1 cm lump 1/18 LN POS
Tx FEC-D chemo, herceptin x17 (one left yay!) uni mastectomy
Christine
__________________
44 yrs old. IDC, Grade III, 2.1cm, Left MX, 1/18 pos nodes, Er/Pr neg, Her2+++ Stage IIb. Diagnosed 8/17/10
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10-27-2011, 05:49 PM
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#22
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Senior Member
Join Date: Apr 2010
Posts: 129
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Re: At what stage were you initially DX?
IIIc in March 2010 and IV in January 2011. I often wonder how I could have missed my original tumor. It was nearly 10 cm when found, and still 3cm at surgery and after chemo.
__________________
March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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10-28-2011, 09:16 AM
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#23
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: At what stage were you initially DX?
Yesterday I went to the walk-in clinic and requested the mammogram notes from late 2008 when i had a "worrisome" right breast mammo and they made me get a second one. (my right breast stage 3b cancer was diagnosed in May 2011).
It turns out my memory was faulty.
I got a second mammo and a follow up ultrasound within a couple of months of that 'worrisome' first mammogram.
The second mammogram and ultrasound were fine. all fine with right breast. no problems whatso-frickin-ever. perfect right breast. "oh well, i guess the worrisome mammogram was wrong."
well: I did not get another mammogram for two whole years. the reason i did not get a mammogram a year after those two, is as follows: I was going through a horrible, horrible event in my life and i did not feel I could handle all the worry that the mammogram the previous year caused me. (after all, it turned out my right breast was fine, correct?). It turns out in retrospect, that had I, despite having awful stuff going on in my life, had that mammogram exactly a year after those other two, that (at least this is what I currently believe, right or wrongly) I may have caught my stage 3b cancer in my right breast at stage one, or two.
Now i have to say, after having written all this....do i even know that is true?
A woman on this site was told by her oncologist that HER2 lines the ducts for years before popping up into tumor formation....so does a mammogram really even detect cancer as well as another machine might?
Oh certainty....how we all long for you....good or bad news
Knowledge, truth....we long for you....but do we have the right tools to find you?
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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10-31-2011, 11:25 PM
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#24
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Senior Member
Join Date: May 2011
Posts: 25
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Re: At what stage were you initially DX?
2000 stage II
2010 stage I
Can't do this again! Mastectomy on left side next year!
__________________
2000-Age 32yrs
First Primary Right side:
2cm tumor, Grade2, ER+/PR+
1/11 nodes +
Lumptectomy, radiotherapy
CMF chemo and 6 yrs Tamoxifen
Retesting in 2010 revealed tumor to be HER2+++
2009
Microcalifications on mammogram
12 biospies- all clear
MRI-all clear
July 2010
Elected mastectomy right side,
10cm IDCS
1cm Tumor, Grade 3
Triple positive
3 Taxotere, 3 FEC
1 yr Herceptin- finish in October 2011
Tamoxifen
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11-01-2011, 08:52 AM
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#25
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: At what stage were you initially DX?
3C Sept 2004
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03-30-2013, 10:26 AM
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#26
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: At what stage were you initially DX?
finally....research that supports the thing i noticed from this poll two yrs ago....that her2 seems to generally get first diagnosed in stage three or four.
HER2-positive disease (in which tumors over-express the HER2 protein) is relatively uncommon in women with small, early-stage breast cancers, accounting for approximately 7 to 10 percent of the cases in these two studies.
http://www.cancer.net/publications-a...increased-risk
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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03-30-2013, 07:34 PM
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#27
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Senior Member
Join Date: Apr 2012
Location: Ontario, Canada
Posts: 62
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Re: At what stage were you initially DX?
3a in Dec 2010.
Still holding my breath.
__________________
Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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03-30-2013, 08:45 PM
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#28
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: At what stage were you initially DX?
Stage IV at diagnosis, in April, 2005 (though it took until May to finish staging). Coming up on a 2 year "cancerversary."
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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03-30-2013, 08:51 PM
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#29
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Senior Member
Join Date: Oct 2008
Posts: 41
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Re: At what stage were you initially DX?
Stage IV in January 2007
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03-31-2013, 05:44 AM
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#30
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Senior Member
Join Date: Oct 2012
Posts: 645
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Re: At what stage were you initially DX?
2000 - stage 1a, er+/pr-/her2+ left
2012 - stage 2b, er+/pr-/her2+ right
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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03-31-2013, 06:30 PM
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#31
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: At what stage were you initially DX?
Stage 4 at dx. 9cm tumor in left breast. In '95 they didn't test for HER2. In '98, w/metastasis, I asked to be tested for HER2. 80% positive was how they graded back in the dark ages. About 6 wks later, the FDA fast-tracked Herceptin making it available to all met bc-ers. Thank heaven!
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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03-31-2013, 07:21 PM
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#32
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Senior Member
Join Date: Sep 2012
Posts: 62
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Re: At what stage were you initially DX?
Stage 1, March 2012.
__________________
**********************************
05/2011 Mammogram - Clear
3/12/12 Found Lump Lt Breast (BSE).
3/13/12 44th Birthday, Mammogram, Ultrasound.
3/15/12 Needle Biopsy on Lump and Suspicious Node.
3/20/12 Dreadful "C" Word.
ER90% PR90% Her2+
1 cm, IDC, Stage 1, Grade 2
4/19/12 Portecath, Lumpectomy & Sentinel Node Removal. 0/4 Node Involvement...Yea!!
Margins Clear......Yea!!
5/17/12 Chemo Begins. TCH x 4.
Herceptin Weekly x 4, every 3 wks thereafter for 1 yr. Muga Scans every 3 mos.
8/13/12 Rads x 30
9/24/12 Start Tamoxifen
10/22/12 CT/Whole Body Bone Scan. No Cancer Detected......Yea!
1/31/13 Annual Mammogram and Ultrasound....NED....:)
5/23/13 Final Herceptin Appt
6/25/13 Port Removal
5/2017 Stop Tamoxifen (Thickening of Uterine Walls)
5/2017 Start Arimadex
6/2018 Start Lupron Shot
9/2019 Stop Arimidex and Lupron Shot
6/2020 Last Oncology Appt
4/2024 NED (No Evidence of Disease)
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04-01-2013, 04:44 AM
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#33
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Senior Member
Join Date: Jan 2012
Posts: 362
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Re: At what stage were you initially DX?
2b in 2011
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.
www.mychemobag.org
www.facebook.com/mychemobag
8 YEARS NED
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04-01-2013, 02:16 PM
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#34
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Senior Member
Join Date: Mar 2011
Posts: 70
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Re: At what stage were you initially DX?
Stage 1 - 2006
Stage 4 - 2010
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04-02-2013, 08:30 AM
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#35
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: At what stage were you initially DX?
Well, you know me and staging. I've seen too many move from 0 to 4, and so many rebound from 4 to free! So, my belief is affliction and I certainly have conveyed that to forums of doctors from around the globe. However, as I was diagnosed with metastatic breast cancer, the current scientific community would deem me stage 4, three years ago.
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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04-02-2013, 12:05 PM
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#36
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Member
Join Date: Apr 2012
Location: Maryland
Posts: 17
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Re: At what stage were you initially DX?
Stage 2b in January 2000
Stage 4 in August 2011
Doc told me that I was his first patient (in his many years of practice) to have so many years between 1st and 2nd diagnosis (11.5 years) with Her2 status. But, I don't think it is THAT unusal, after reading the history of so many people on this forum.
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New Years Eve 1999 - found lump in breast
1/2000 - diagnosed with BC (age 36), .9 cm, 1 out of 9 nodes, Er and Her 2 positive (at time of diagnosis, herceptin wasn't available for stage II)
4 rounds of AC and tamoxifen for 5 years.
11.5 years later.....mets to lungs. ER and Her 2 positive
8/2011 - Tamoxifen, Zoladex
3/2012 - tamoxifen, Zoladex and Herceptin
6/2012 - scan showed stability and some reduction
9/2012 minus tamoxifen add Femara. (Due to increase of symptoms) Still on Zoladex and Herceptin
10/2012 Adding Perjeta. Continuing with Herceptin and Zoladex
11/2102 Added taxol due to percardial effusion
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04-02-2013, 12:17 PM
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#37
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Senior Member
Join Date: Sep 2011
Location: Mt. Prospect, IL
Posts: 177
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Re: At what stage were you initially DX?
Stage 2 - 10.01.10
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10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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04-03-2013, 04:40 PM
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#38
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Senior Member
Join Date: Jun 2012
Posts: 129
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Re: At what stage were you initially DX?
2B, april 5, 2012
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Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
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04-03-2013, 08:18 PM
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#39
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Senior Member
Join Date: Mar 2012
Location: New York, new york
Posts: 73
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Re: At what stage were you initially DX?
Stage 1. 2001
Stage 4. 2010
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Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
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04-04-2013, 10:19 AM
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#40
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Re: At what stage were you initially DX?
Hi;
I was diagnosed at stage 3C I believe. My oncologist never really said anything other than metatastic.
Cathya
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Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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