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04-28-2007, 05:01 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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A Visit with Dr. Pegram
Sorry it took me so long to get this done, but now I'm glad I spent the time transferring our discussion (in Dr. Pegram's office) from the little digital recorder to paper. Thanks to the person who suggested taking a recorder along. What a great idea. Had I not done that, a lot of information would have been lost.
http://www.her2support.org/barbara.htm
__________________
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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04-28-2007, 06:07 PM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Barbara, I know that it took time to do this for all of us. Thank you for making your precious time with the doctor available to us. What a wonderful gift! 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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04-28-2007, 07:04 PM
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#3
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Senior Member
Join Date: Dec 2005
Posts: 274
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Thank you
Barbara,
Thank you so much for taking the time to share this with us. It was very informative and matter of fact. Much appreciated.
Sincerely,
Liz J.
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04-28-2007, 08:06 PM
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#4
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Senior Member
Join Date: Feb 2007
Posts: 108
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Wonderful! Your are right, the tape recorder was a brilliant idea. Thanks!
__________________
Age 50, premenopausal
Dx 1/2/07 DCIS/IDC
Lumpectomy 1/4/07 1.1cm tumor
SNB 3 nodes clear
Stage 1, Grade 2, HER2+++ (FISH 6.8)
ER + / PR +
TCH, 6 rounds, finished 6/1/07!!!
Herceptin to continue for 1 year
36 rads finished 8/22/07
Port out 8/27/07
Switched to Herceptin weekly for joint pain
Ooph 11/13/07
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04-28-2007, 08:15 PM
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#5
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Thanks Barbara and Dr. Pegram. Great questions from The Her2 gang. The answers give me hope. BB
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04-28-2007, 08:19 PM
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#6
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Member
Join Date: Jan 2007
Location: San Clemente, California
Posts: 14
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Thank you so much for typing this up and sharing! It was so helpful. I, too, saw Dr. Peagram and he very kindly consulted with my oncologist about my treatment.
I'm NED two years from diagnosis of stage IIIc BC. My oncologist says my chances of long term survival go way up when I pass this anniversary. I have all my scans in May to make sure I'm still NED. I'm praying for good results.
Thank you all in this group. You have been so encouraging and knowledgable and helpful to me through this incredible journey.
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04-28-2007, 08:20 PM
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#7
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Senior Member
Join Date: May 2006
Posts: 143
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Dear Barbara:
Thank you so much for taking the time to relate all this information to all of us. Your visit with Dr. Pegram was really informative and full of helpful (and reassuring) information for me, and I'm sure for lots of others.
THANK YOU
Linda
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04-28-2007, 08:46 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Barbara
What a wonderful thing you did for all of us. I know how much time this must have taken you. Thank you so much.
__________________
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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04-28-2007, 09:33 PM
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#9
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Barbara
I got as many "smart bumps" (my phrase for being impressed by smart people) from your questions as Dr. Pegrams answers. What an amazing job you did of putting together great questions, making the appointment, getting there, asking the great questions and recording the great answers two times. Thank you from the bottom of my heart. And it sounds like you can begin to get on with life, huh?! THAT is the best part. I'm very happy for you!
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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04-28-2007, 09:39 PM
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#10
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Barbara,
Thank you so much for taking the time to share your visit with us. It was very informative.
Lexi
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04-28-2007, 09:42 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Wow! Thanks for sharing this!
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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04-29-2007, 02:35 AM
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#12
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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A true gift...
Dear Barbara,
You have given all on the site on a true gift...many heart felt thanks.
I am so glad that you followed your instincts and went for the second
opinion. I knew you would gain great information which would address
your concerns.
God Bless you for a job "Well Done"
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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04-29-2007, 03:54 AM
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#13
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Senior Member
Join Date: Sep 2006
Location: Savannah, Georgia
Posts: 301
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Barbara,
This was such a wonderful start to my Sunday morning. So many questions I have wanted to ask were answered. I am going to copy this and keep it with me. Thank you from the bottom of my heart for all of the time and effort that you put into this.
Love, Kelly
__________________
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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04-29-2007, 04:53 AM
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#14
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Thank You
Hello Barbara,
Wow..........I can't thank you enough for sharing all this wonderful information with us all. I sat at the computer this morning, with my coffee, and read it all to my husband.
Hugs to you and once again, thank 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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04-29-2007, 05:30 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: NYC
Posts: 250
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Thank you! That was a very kind thing of you to do. I'm sure that visit brought you tremendous peace of mind.
Jen
__________________
dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com
"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
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04-29-2007, 05:54 AM
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#16
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Member
Join Date: Mar 2007
Location: Indpls, IN
Posts: 12
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Barbara,
EXCELLENT! Great job putting this together..so easy to read and informative. Thanks for doing that!
JeanB
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04-29-2007, 06:17 AM
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#17
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Member
Join Date: Apr 2007
Posts: 10
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Thanks
I am recently diagnosed, in the middle of chemo and wondering if I can take much more. Your article is one of the nicest things that I have read recently. Thanks Nancy
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04-29-2007, 06:18 AM
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#18
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Great job Barbara, thanks for doing this for all of us.
__________________
Andi
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Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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04-29-2007, 08:08 AM
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#19
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Thanks from me also, very interesting and VERY encouraging!
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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04-29-2007, 08:15 AM
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#20
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Senior Member
Join Date: Feb 2006
Posts: 437
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Hi Barbara,
Thank you for posting and doing such a great job in asking Dr P such relevant questions.
It's wonderful, to cut through all that speculation that out there and really hear some clear concise accurate info!
God Bless you.
Linda
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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