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11-23-2007, 12:49 PM
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#1
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I recurred 15 months after initial treatment. I would say breathe. It's hard to enjoy life trying to predict what date is stamped on the bottom of your foot... to keep it in perspective, I always told myself that I could step out my front door tomorrow and a meteor could fall on my head. Some things you just can't predict... some people with Her2 never recur, and many who do are surviving and thriving for indefinite numbers of years. Her2 is quickly becoming the most manageable DX in breast cancer even with recurrence. The trends are toward chronic and not deadly disease, and there is sooooooo much in the pipeline that looks promising. Does this help at all?
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Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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11-23-2007, 01:58 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Within the first 2 years is when HER2 breast cancer is most likely to occur. After the 2 year mark HER2 recurrence is on the same playing field as regular breast cancer. If I were you, I think I'd just relax but stay mindful of any symptoms. Best of luck to you. You're in my prayers.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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11-23-2007, 07:21 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 476
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sometimes ago, I found an article with recurrence rate vs. time for bc patients. For most of them, the curve peaks around 18 months after initial diagnosis and treatment (removal of primary site by surgery). The reason was that microinvasions of stray cancer cells need that much time to become noticeable (with symptoms). Recently, I discussed this with my onc again on this very subject, he agreed with the info since the data appeared to match with his patients. However, for HER2 patients, the peak is 12 to 16 months since the cancer cells are more aggressive and faster acting. Therefore, the 2 year mark is a very significant roadmarker for people in this forum, since they have already passed the peak rate. Too bad that I couldn't locate the article but the info above are generally correct. Hope this helps.
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Ann
Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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11-23-2007, 07:33 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Is that two years from actual diagnosis time??? I'm 28 months since diagnosis and worry about this too..
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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11-23-2007, 07:47 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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It is from the surgery date, even if you had chemo first.
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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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11-24-2007, 07:25 PM
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#6
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Member
Join Date: Nov 2007
Location: Minneapolis, MN
Posts: 20
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why?????????????? would you care??
I am going on 12 years and I never thought about it coming back an I did not want to ever beleive it would... I guess I like being in denial because then everything was in my control.. It seem to work it took me 7 years, and we did not know of HER2 back then.. Look take it from a girl who has been there, don't ask when, ask why should it come back!!!!!!!!!!! Just my thoughts
MPB
__________________
MPB
IDC in 1996 Stage 3 Grade D 17 pos. nodes
2003 liver mets found HER2 Her/Taxol then did the first trail for Trykerb and Xelosa until 11-07
Six new tumors on neck will be starting the MCC_DM1 trail this week.
"Believe in miracles, and watch them happen!"
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11-24-2007, 07:51 PM
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#7
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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I, too, would think on this often. Am I their yet? Have I passed the crucial time? One day I decided "that's it!" Now when fears assail me and this pain or that pain shouts to me "what if this is cancer?", I stop myself and say "stop! For now you are considered NED and until someone tells you have a cancer again forget about it and live your life." I'm starting to get the philosphy that even IF (and that's a BIG IF) I have cancer again I will not worry about it "today" because if it's their, it will be their tomorrow too.
So, as others have said, grab a hold of today - savor it ! A time frame is only a time frame - a statistic is only a statistic but life is OURS for the taking. Today!!!!! ENJOY!!!!!!!!!!!!!!!!!!!!!!!!
A 2 year 4 month survivor (but who's counting) 
Love and God's Peace to you,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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