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Old 05-02-2007, 07:49 PM   #41
fullofbeans
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Thanks for all the effort you went th', I think it is very kind, what a good idea. I also like the fact that he is in such agreement about the importance of diet (often not very recognised by Dr.).

But not sure I agree with his response on lack of results for Her2 vaccination! Although I agree past results have been very poor but perseverance is the name of the game.. I personally think that it is the future of cancer treatment, immunological response is a beginning..ability to target is being improved and tunned, Her2 cancer have a slight head start..(at least this is what I beleive)

Take care ands thanks again
Karina
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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 05-03-2007, 12:33 AM   #42
Chelee
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Barbara, You went above and beyond the call of duty. lol Thank you so MUCH for going to all the trouble of putting together that webpage for all of us to read. That took some time and I so appreciate it. Very well done! You asked some great questions...and you asked the one I wanted to know about. Which was continuing on herceptin pass a year. He addressed that in your conversation. You managed to cover alot of ground with him.

Thanks a million...that was so nice of you to do for all of us.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 05-03-2007, 05:56 AM   #43
Emelie
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Reasurring news

Thank you so much Barbara for taking the time to post this for the Her2 ladies club. I sent it on to both of my daughters who are away at college to help reassure them that I have done, and will continue to do, everything I can to be around for them. One daughter is in Prague doing a study abroad, so she and I rely on the internet and weekly phone calls to catch up. She really appreciated hearing from a doctor that her mom has a great chance to be here when she graduates.
Thank you again,
Emelie
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Old 05-03-2007, 10:03 AM   #44
Barbara2
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Thank you, too!

Thank you to all for your kind comments. I have gotten so much from this support group, and this was an opportunitiy to give something back. We all are here to learn and offer support to each other. Every time a post is made, it helps someone in someway.

When I was diagnosed in Oct of 02 our only child/son was a senior in high school. (I was teaching, but after surgery I never returned to the classroom.) By graduation day, chemo was behind me, but I was struggling terribly with chemo brain. Just being able to attend the graduation, though, was a huge blessing.

I later told my son, that my next goal would be to see him graduate from college. (With Her2+ breast cancer, I really wondered...) In one week, that's where I will be, once again counting my blessings. After that he plans to attend school for three more years... and I'll be setting goals.
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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 05-03-2007, 02:29 PM   #45
darra
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Thank you,Thank you, Thank you.........
I am speechless, what a gift you have given
Darra
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Old 05-03-2007, 09:00 PM   #46
tousled1
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Barbara,

Thank you so much for sharing your consult information with the group. I know that some of the questions you asked really managed to put my mind at ease. You did a wonderful thing and thank you very much.
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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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Old 05-04-2007, 05:41 AM   #47
momdeeco
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Barbara,
A great big thanks and huge hug from me to you!!! It was so imformative and reassuring! It's gonna be a great day!!
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Karla
8/05 NORMAL MAMMO
11/05 DX AFTER FINDING LUMP AGE 47
STAGE 1 HIGH RISK
1.1 CM/NODE NEG
ER-/PR- HER 2 +++ GRADE 3
12/05 PARTIAL MASTECTOMY
1/06 CHEMO AC DD X 6
5/06 RADS X 30
10/06 STARTED HERCEPTIN AFTER 3RD OPINION
3/07 GENETIC TESTING-GENE VARIANT FOR BRCA 1 AND 2
3/07 STOPPED HERCPTIN DUE TO LOW EF
BSO 8/08 (P53 SIGNATURE--PRECANCEROUS CELLS)
11/08---IN A STUDY/MRI EVERY 6 MONTHS/MAMMO EVERY YEAR
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Old 05-04-2007, 05:51 PM   #48
Susan McQ
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Great Reading

Thanks for posting. It was very informative.


Susan
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dx IDC @ age 39 Feb '06
stage 2 er/pr-, her2+
neoadjuvant chemo 4 A/C completed April '06, 12 weekly taxol/herceptin completed 8/06, lumpectomy 8/15/06 NED!
33 rads completed 10/06
weekly herceptin thru May 2007 --Stopped herceptin 4/07 due to drop in LVEF. Started Herceptin again 5/07
Final Herceptin 6/12/07
Port Removed -8/13/07
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Old 05-05-2007, 10:26 AM   #49
Kim in CA
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Dear Barbara,

Thank You, Thank You, Thank You!

Kim in CA
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Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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Old 05-06-2007, 06:19 PM   #50
G. Ann
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Hi Barbara,

Thank you so much for sharing your appt with us. It was very informative & encouraging, and will help me put things in proper perspective.

I especially liked Dr. Pegram's personal message to you, and as a result of your generosity, a message for all of us. Dr. Pegram: "You can sleep at night that you've done everything you could possibly do. And after you do everything, then you can stop worrying because at this point it's not going to be up for you to decide. Either you're going to be cured or not...prepare for both...But you have to be prepared for the fact that you might be disease free forever. You know, that's a good possibility."

WOW! It's just what I needed to hear!!
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G. Ann
DX 2/04, mastectomy, 2.5 cm tumor, grade 3
Her 2 positive, 60%, 3+/strong, ER/PR-
Stage 2, 0/18 nodes
TX 4 AC (no taxanes, no radiation)
Hysterectomy 10/04
Began Herceptin 1/06, finished 1/07
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Old 02-16-2008, 07:52 PM   #51
Christine
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Barbara 2 and Dr. Mark Pegram

I had a nice chat with Dr. Pegram at the San Antonio BC Symposium and mentioned Barbara's post of her meeting with him. A smile came to his face as he remembered it quite well. I thought that I would rerun this post as it was one of the most viewed on our website and is extremely interesting and informative.

Regards
Christine and Joe
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1990, July DX 1.1cm er-, pr-
Lumpectomy, 5U4, radiation
1999, June mets to chest and brain
HER2 3+++, er- pr-
AC, Taxol, Herceptin, Gamma Knife (3 treatments) WBR
NED July 2001
December 2001 - Founded HER2 Support Group
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Old 02-16-2008, 09:48 PM   #52
goops
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Thanks for taking the time to write all that down - it is very interesting as well as encouraging.
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May 2007 - Stage 3A, 12 positive nodes, her2 positive
July 2008 - Stage 4 - Liver Mets

Help my city grow:

http://goopsville.myminicity.com/ind/
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Old 02-17-2008, 07:11 AM   #53
Joan M
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Barbara, Very awesome! I'm impressed with how organized you were. Thanks for taking the effort to transcript your meeting with Dr. Pegram. Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 02-17-2008, 07:56 AM   #54
mimiflower07
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dearest barbra
what can i say to you that you have not already heared from these great friends. So from a newbie this was a true gift to me. I often feel stuck......downweighted.(in the not knowing)..i will be starting herceptin Tues, and your wonderful information has lifted my spirit. This was just what many of us need to hear. Validation!!!
thank you for extending this to all of us
suzanne
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suzannne
dx aug10/07
3 pos high, grade 3
tumor 2.5cm multifoc
bil mast recon sept 24/07
neg snb/neg lymph vascular
clear marg
chemo a/cx 4 rds
tomoxifan started feb11/08
herceptin to begin soon
herceptin completed feb/09
aromacin(A.I)for as long as i can
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Old 02-17-2008, 09:20 AM   #55
Mgarr
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Everyone else has said but again A GREAT BIG THANK YOU
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Mary


Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson

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Old 02-18-2008, 09:30 AM   #56
Cathya
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Barbara;

Thank you so much for putting this together for us. It answered many questions I had and I will bookmark it for re-reading. I know this sort of thing takes a lot of effort and I do really appreciate your time.

Cathy
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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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Old 02-18-2008, 11:50 AM   #57
basset girl
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Thank you!

Thank you Barbara for your post. So many of the questions were ones I had been wondering about. It was so nice of you to share. Nancy
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Nancy

Diagnosed 4/06, age 45
IDC, 3.5 cm, 4/7 positive nodes
Stage IIB
Her2++, ER & PR++
Mastectomy, 4 AC, 4 Taxol & Herception for one year
Radiation
Ovaries out 4/07
Currently taking Arimidex and Zometa every 6 months
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