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Old 10-25-2007, 05:45 PM   #81
dlaxague
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Posts: 221
Not wrong, that's a correct quote, but just not all of it. Somewhere it says in the short version that some of the markers have limitations or are only for certain circumstance (my words, not their, I'm in a rush). Here's the quote from the full article, about primary f/u using CA 15-3 and CA 27.29:

CA 15-3 and CA 27.29 to detect
recurrence after primary breast
cancer therapy
Present data do not support the use of CA 15-3 and CA 27.29 for monitoring
patients for recurrence after primary breast cancer therapy.
There is no

change from the guideline published in 2000
.

Formatting lost, as usual. And the discussion, which I'm just now reading, between fixing dinner chores:

2007 recommendation for CA 15-3 and CA 27.29 to detect recurrence
after primary breast cancer therapy.
Present data do not support
the use of CA 15-3 and CA 27.29 for monitoring patients for recurrence
after primary breast cancer therapy. There is no change from the
guideline published in 2000.

Literature update and discussion.
Several well-designed studies
have shown that an increase in CA 15-3 or CA 27.29 after primary
and/or adjuvant therapy can predict recurrence an average of 5 to 6
months before other symptoms or tests. While additional studies have
been published since the last ASCO guideline that address the value of
these serum markers at detecting recurrence,
11-16 there are no prospective
randomized clinical trials to demonstrate whether detection
and treatment of occult or asymptomatic metastases using tumor
markers impact on the most significant outcomes (disease-free survival,
overall survival, quality of life, toxicity, or cost-effectiveness).
Although the assay was approved by the US Food and Drug Administration,
theUSFood and Drug Administration does not require tests
to show clinical benefit if that is not part of the manufacturer’s indication.
Given the limited evidence, and until clinical benefit is established,
present data are insufficient to recommend routine use of CA
15.3 or CA 27.29 for this application. This recommendation is in line
with that of the ASCO guideline for follow-up and management of

patients with breast cancer.
9

Debbie again - There's another disclaimer that you'd like, about individual judgment and the recommendations not being always the best for individuals - use my link and read the whole thing, it's fascinating, at least so far.
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Old 10-25-2007, 05:49 PM   #82
Becky
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I will be at SABCS as well.
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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 10-25-2007, 05:52 PM   #83
hutchibk
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Debbie,
Goodness. I suppose you have parsed the report to the inth degree and proved your point if that is what you are hoping to do. You are "righter" than I am if you need to be. I retract "well there you go" response because I am only partially correct at reading the conclusions of Lani's 5:15 post. You win when it comes to interpreting and agreeing with generalized studies and NCCP, ASCO, etc guidelines.

Thank goodness you don't go to my doc. He would drive you crazy with his desire to treat outside of strict guidelines.
__________________
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 10-25-2007, 06:28 PM   #84
AlaskaAngel
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Question

They neither recommend against routine use nor recommend routine use of markers for primary stage bc.

So far it appears they are continuing to remain generally out of touch by actual clinical practice and preference among a fair number of their own specialty, as well as among the majority of patients.

http://her2support.org/vbulletin/showthread.php?t=30703

Does their report indicate they recommend that the studies they say have not been done to provide adequate documentation for any meaningful conclusions be done? Or are they satisfied to simply not recommend for or against use of markers indefinitely?

A.A.
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Old 10-25-2007, 06:42 PM   #85
hutchibk
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Well, I am glad they are definite and decided about what they recommend... LOL. That is an attempt at sarcasm, fyi.
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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 10-26-2007, 08:10 PM   #86
Barbara2
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Are tumor markers reliable?

Question from Ruth: Do tumor markers in the blood always show if breast cancer has spread and/or if you have developed another separate cancer?
Answer:
Larry Norton:

Tumor markers in the blood are helpful but not definitive. Some patients can have growing disease and the markers do not become elevated. Others have elevated markers but no disease. Tumor markers are often a source of anxiety that is unnecessary because they are helpful, but not absolute in terms of their meaning. For this reason, tumor marker results have to be interpreted by an expert oncologist.

(Larry Norton, M.D. is Deputy Physician-in-Chief and director of breast cancer programs at Memorial Sloan-Kettering Cancer Center in New York City.)
__________________
Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 10-27-2007, 05:35 AM   #87
Lauriesh
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I wanted to add that I know a woman (a young woman) who only discovered her bone mets after her hip broke and she needed a total hip replacement, which was the scenario that Brenda's onc referred to.

To Debbie, what do you say to her. How do you argue that finding her mets early (say as just a spot on her hip that showed up on a routine bone scan) wouldn't have improved her quality of life.

Is her case rare? yes it is. But it was also rare for me to get breast cancer at 37, with no family history. I get tm and routine scans because while it is rare, I do not want to be like this woman. I have three little kids and I don't want to be in a wheelchair for the rest of my life.

I think there are more onc's like Brenda's out there and it will only be a matter of time before research and studies reflect this newer thinking on catching mets early.
But until then, I am looking out for myself.

Laurie
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Old 10-27-2007, 09:41 AM   #88
fullofbeans
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Posts: 617
The uncertainty of sciences can be a frustrating concept at best of time but is a concept that is especially difficult for us to accept since we would like definitive answers.

Just like a chemo works for some and not for others we have to accept that until now there are no bullet proof TMs.

In the meantime what is a girl to do?, well I will no longer go there;-)
__________________

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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Old 10-27-2007, 10:51 PM   #89
dee
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One. Tiny. Thought -

From a tiny member of the Silent Majority... - I suspect your collective thoughts and writings on this major subject have been tiresome to some of you involved, as 'evidence' from the narrative would indicate. For us, it's been invaluable. Thanks for your risk taking behavior. We appreciate your dialogue!

Dee
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4 year bc/her2neu survivor
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Old 10-28-2007, 05:02 AM   #90
newgg
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"Power"

Agree with Dee and from another member of the folks that read this board every day......all you risk takers give the entire board....you give us POWER! And we will not "should" on ourselves or each other. What we should or should not do ....that goes directly go our personal decision and our individual comfort zone. BUT.....we all need many pieces of the POWER pie to travel this journey. Some have all these power pieces...you know: Power of faith, Power of family, Power of modern chemicals, Power of strong support, Power of attitude and here we get the Power of Knowledge !! We do not have to agree and we can agree to disagree. These discussions give all of us added resource to our Power of Knowlege. There is NO other place to learn more about HER2 serum, power ports, cyber knife, chemo combos, crazy hair, shared giggles and love. Thank you, Thank you, Thank you....for the info and discussion and the POWER ! Keep it up !!! Hugs, Bonnie
PS....my personal comfort zone is to do the markers.
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Old 10-28-2007, 11:47 AM   #91
hutchibk
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Now, it isn't necessarily reflected here, but just so's youse guys know - Debbie (dlaxague) and I do have a lot in common and are friends behind the scenes... we both like potatoes, love the Four Agreements, and are pretty adept at feisty debate! LOL. I try to reserve debate for the subjects I am really interested in and feel I have something valuable to offer as I believe she does, too. This thread forced me to do some clinical research (in my doc's office...ha) and I learned a lot. Thanks for putting up with us and our diversity of info and beliefs.
__________________
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 10-28-2007, 02:06 PM   #92
StephN
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Lightbulb Ah Ha - decision tree

Hi everyone -
Should anyone wish to read further on this subject ...

In scanning once again this thread I saw the words "decision tree" someplace and now can't find it. These words triggered something deep in my memory and I went in search.

BTW - before I get into that, I want to mention that the NCCN is having a conference in La Jolla on Nov. 7:
http://www.fhcrc.org/patient/treatme...hKind=clinical

In which they will take up the subject of Guidelines Overview and Update on Quality Initiatives. That item is first on their agenda.

Ok, back to the original thought. When I was diagnosed I recall going over some treatment guidelines with one of my practicioners. Hunted in my folder of early info gathered at DX and found "Breast Cancer Treatment Guidelines for patients" Version III, June 2000, a 51 page booklet. A joint publication of the American Cancer Society and and the NCCN. There are chapters with Decision Trees for every stage of BC. AS well as "Follow-up/Recurrent Cancer."

Each passage which pertained to my original diagnosis is marked. When it came to the Decision Tree I found my stage, my pathology and the general treatment options (they were very general). In the "follow-up" section the info is scant and basic as to how many exams per year, length of time between mammograms and what to do if you are on Tamoxifen. Got much more specific as to work-up for a suspected recurrence, bone pains, etc.

These decision trees are basically OUTLINES of how to proceed for various types of BC. In the version I have there was nothing about what NOT to do for followup.

I know this is "old" information, but the fact that it was SO GENERAL is what I want to point out. At that time it seems to be left up to the oncologists to decide what was best for any particular patient, and may be why so many of our doctors STILL are not in lock step with whatever guidelines have come out in the meantime.

In explaining my particular "scary" diagnosis to my family and friends, I found this booklet very helpful as it was succinct and had easy to follow visuals for each stage. I had to flesh it out with specifics of my own treatments, but the "why" was there in black and white.

I don't find these trees on the NCCN site, but you have to be a member to have access to it all.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 10-28-2007, 02:55 PM   #93
Mary Anne in TX
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I don't have a clue just where the "trees" are, but I went through them over and over when I was first diagnosed. As I read your post, I remembered that when I first began to search the "trees", I was so hoping for more detais! But over time I saw the wisdom too in the options left to those who cared and cared for us. As I traveled back in time I had the opportunity of be so grateful for the options my onc chose for this ol' gal! Thanks Steph. ma
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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