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Old 11-23-2007, 10:46 AM   #1
penelope
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what is the average time to recurrance

for her2+ er/pr- cancers? Anyone know. I am 29 months out and just want to know when I can breathe again.

I have seen the answer on this board somewhere but can not find it now.
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Old 11-23-2007, 10:56 AM   #2
Grace
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Dear Penelope,

Please breath. I believe with HER2, one can start feeling safe (everything is relative, of course) after two years. Sounds like you are now in the safe zone, so congratulations. If anyone knows differently, please don't rush to tell me. It's head in the sand time of year for me.
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Old 11-23-2007, 10:59 AM   #3
Sheila
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Penelope
It seems to me when you are past 2 years the risk goes down...you still need to be vigilent but the risk is lower...I recurred 1 year 7 mos after diagnosis...
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Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 11-23-2007, 12:28 PM   #4
PinkGirl
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Post my onc

My onc told me 18 months to 2 years.
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PinkGirl

Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 11-23-2007, 12:49 PM   #5
hutchibk
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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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Old 11-23-2007, 01:58 PM   #6
tousled1
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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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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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Old 11-23-2007, 07:21 PM   #7
CLTann
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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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Old 11-23-2007, 07:31 PM   #8
juanita
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My brain is elsewhere tonight cuz I was at a football game, but is this from the date of surgery or date of treatment or what? It's probably printed right there and I'm just missing it.
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 11-23-2007, 07:33 PM   #9
tricia keegan
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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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Old 11-23-2007, 07:47 PM   #10
Becky
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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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Old 11-23-2007, 10:57 PM   #11
juanita
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Wow, I've made it! September 5 was 3 years from my surgery!
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dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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Old 11-24-2007, 03:22 AM   #12
tricia keegan
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Thanks Becky, and congrats juanita! My surgery was two years last July, so far so good!
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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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Old 11-24-2007, 05:10 AM   #13
KellyA
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Congratulations to all of you for making this important milestone! I am only about 18 months out, and trying not to agonize over the time- just keeping very busy with work and the kids and trying to keep my mind off of it all. I am happy to say that the "fog" from treatment has finally lifted, and for the first time since dx, feeling like my old self (as much as that's possible!) again. Markers and scans in Dec., so I'm praying for the best!

Love, Kelly
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dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 11-24-2007, 07:08 AM   #14
pattyz
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I was dx'd at 29 mos.

Mets to mediastinal nodes/spot on lung+pelvis, then brain two mos. later.

Her2+++ er+ pr-

However, was not tested for Her2 status at orig. dx, and DID NOT receive Herceptin until mets dx.

Since tx w/ Navelbine/Herceptin late in '02, my body has remained NED, though brain mets recurred twice to present.

Point: that's five yrs NED in body (as far as we can tell).

Around the one yr mark, I decided to 'breathe', refusing to continue to live in fear. What if I lived to be 90 with no recurrance, yet had messed up by living in fear the whole time????? That question to self got me out of the box.

pattyz

"There are lies, damned lies, and statistics." MT/SC
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Old 11-24-2007, 07:36 AM   #15
CLTann
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The counting starts at the surgery of breast cancer removal. The DX date has no significance in this case since one can discover early or late, depending on the judgement of the person who makes judgement on any palpable lesion. Some BC was not found by conventional methods. On the other hand, surgery date is a definite mark where a known source of BC was removed. If there were stray cancer cells lodging somewhere, it will take time for the cancer cells to multiply and show symptoms. This process will take time: thus the time factor comes into play. For people doing various defense steps, such as hormone therapy (arimidex, for instance), fatty acids balance, curcumine, etc. the body keeps on killing new cancer cells (which occur to all people) as a normal defense mechanism. Of course, recent info on certain cancer cells which become invisible to body self mechanism is quite disturbing.
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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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Old 11-24-2007, 09:10 AM   #16
mke
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Like Kelly, I guess I'm at the peak recurrence time, about 18 months post surgery. But I'm feeling fine, so what the heck. Next couple of months will bring lots of celebrations and those tests and scans. I'm going to enjoy the former and try not to think too much about the latter.
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Old 11-24-2007, 09:11 AM   #17
nitewind
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Congratulations Juanita! So far, I'm 16 monthes out from my surgery, I'm looking forward to the day that I can breathe just a little easier.
hugs
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 11-24-2007, 09:35 AM   #18
michka
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I am disappointed because I thought it was 2 years from chemo or surgery whatever was done first. This is 6 months difference in my case.
Since after chemo I still had a residual tumor and some positive nodes, I wonder why they did not operate right away. I lived 6 more dangerous months with these cancer cells. But they had told me it made no difference for survival whether they did one or the other first. It could just give me a chance to save my breast. And in fact, it didn't.
A neoadjuvant chemo is often recommended by the doctors and it is not only because they cannot operate because of the size of the tumor.
What advice should we give to our unfortunate newcomers?
Michka

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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 11-24-2007, 10:35 AM   #19
Alice
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Hi Michka,
I also had neoadjuvant chemo and this delayed my surgery for about 8 months. I think that the time frame of waiting , at least in my case, was well worth the potential risks. Because of having chemo while there was still measurable tumor present, I was able to see just how effective my chemo regimen was. If the tumor is removed first, there is no way to assess the effectiveness of the chemo and you just have to have faith that it was the right one. I hope this makes you feel at least a little better. I too questioned for a long time if I had made the right decision, but now I am very glad I did.
Alice
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Old 11-24-2007, 11:04 AM   #20
Becky
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One should not worry about these things. Patty said it best - why worry about survival if you do not live (as in live your life to the fullest).

Those of us who are beyond the 2 years were once at 6 months, 12 months.

To be a 25 year survivor, you must first survive the 1st year, 2nd year. We all have to put in our time, day by day. No shortcuts in a 24 hr day unfortunately. Do not think of it as time, think of it as a new day - everyday!
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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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