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04-14-2008, 12:24 AM
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#1
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Notes from Cancer Research Conference
From StephN:
This is a HUGE conference and the site is at least 8 blocks long. That means a lot of time on our feet!
There have been some interesting sessions that have information boding positive for the future of breast cancer. I trolled some of the big drug companies to see if there are any new drugs coming into trial that are about to open.
YES! Some exciting trial using more targeted therapies are about to open. More specific links and info to come.
More soon.
From Madubois63:
Steph is NOT kidding when she said the conference is HUGE!!! Yesterday, I spent the day getting lost trying to find some of the sessions that were going on, walking back and forth before finally finding the right rooms and still getting used to the time difference. at one of the sessions, I spoke up at the q&a about "US" and our desire to do something with our slides. Before long, Joe had an e-mail from a Dr that is very interested in us. Today was the day that the exhibits opened. Joe and Christine pretty much had everything set up by the time Steph and I got to the conference center. The exhibit hall opened up at 12, but people came in earlier. The were people from everywhere. we gave out mouse pads, brochures, pens and pins. Tiptoe and Tex came with us. They were sitting on the table and someone tried to take Tex. So we had to hide them under the table. They did come out for some pics, but mostly had to hide. Joe found a new companion, she's a chicken without a name as of yet. So now they are a trio. There were also several people that asked if I was the woman that spoke about the her2 slides. I'll collect all the info/contacts and pass it on, but I think something may come out of this. towards the end of the day, a man passing by saw our booth and mumbled that he named the gene. Steph immediately recognized that man's name on his tag. Prof. Dr. Axel Ullrich is the man that discovered and named the Her2neu gene and assisted on creating Herceptin. I cried and hugged him. I felt kind of silly getting so emotional, but I knew I was in the presence of a great man!!! we all talked for a bit and took pictures. You'll have to wait for the pics because I don't know where the editing tool to resize pics is on this stupid laptop. After we closed shop in the exhibit hall, Joe, Christine, Steph and I went to a session on Her2. The speaker was the other doc (Dr. Dennis Slamon) that created Herceptin. This was all very exciting for me. we had a great day. Joe and Christine went home, and Steph, Tiptoe, Tex and the chicken without a name and I all went out to dinner. Time for bed now, but more info to come....love to all!!!
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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04-14-2008, 04:17 AM
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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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You guys are wonderful! Thanks so much for the pictures by word of what's happening! Please keep it coming! It's like being there with you. 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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04-14-2008, 06:54 AM
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#3
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Christine, Stephanie, Maryann and the guy who invented Herceptin
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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04-14-2008, 06:58 AM
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#4
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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The first photo is Dr. Lloyd-Jones who pioneered the 3 week Herceptin protocol.
The second Photo is Dr. Ullrich
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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04-14-2008, 07:15 AM
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#5
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Senior Member
Join Date: Nov 2007
Location: We presently live 1 1/2 hrs fr a city. in manitoba canada
Posts: 148
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thanks you Joe for the pics...seeing how great everyone looks after knowing all that some of you have been through is a real inspiration.I hope this trip was not to exhausting.
thanks for all your hard work for us!!
suzanne
__________________
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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04-14-2008, 07:37 AM
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#6
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Thank you so much to all of you for giving us these updates. It sounds so exciting - tiring but exhilerating at the same time. You are actually meeting all of these doctors and researchers who are only names to me.
An attempted kidnapping for ransom of poor little Tex. How
awful. I know you will shelter and protect the kids now
that this has happened.... as well as Chicken.
Please keep the updates and pictures coming. I can
feel your energy through the computer. Thanks for
doing this for all of us. Is Tippy too warm in her sweater???
__________________
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
My Photo Album
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04-14-2008, 07:48 AM
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#7
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Thank you both for updating us....yes, the walking is exhausting, we all had tired feet when in SA, I have to chuckle now when I think how poor Sheila and Becky tried to help me find shoes, my feet were killing me from the pairs I brought with me.
But it is exciting and when meeting these wonderful men/women
it is deeply moving...understand the emotion.
Sounds like you are all having a wonderful time.
Please give Joe and Christine a hug.
Kind Regards,
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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04-14-2008, 08:34 AM
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#8
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Senior Member
Join Date: Sep 2005
Posts: 232
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Reading your post filled me with so much hope.
Thank you.
Karen
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04-14-2008, 08:48 AM
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#9
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Senior Member
Join Date: Dec 2005
Location: Michigan
Posts: 230
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Thanks for the positive notes on the conference. Enjoy!
Mar
__________________
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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04-14-2008, 08:49 AM
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#10
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Thanks for the updates ladies and to Joe for posting the great pictures. It is exciting for us to see the "real" people who are the medical pioneers in the Her2/herceptin world. I hope these bright guys have more tricks up their Her2 sleeves so that the total cure is available to us all very soon.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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04-14-2008, 03:20 PM
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#11
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Thanks for all the pictures and updates about the conference. Enjoy
yourself and keep the news coming.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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04-14-2008, 04:57 PM
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#12
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Hello everyone -
I wish I had a camcorder going here! So many people from ALL over the world stop at the booth and want to talk about what is happening with HER2. They are very pleased to see REAL LIVE stage IV survivors who have benefitted from what has gone before.
The really exciting thing is to see how many people are working in labs on drug resistance. Especially with the resisitance that HER2 positive tumors can develop. There was even one young man who is already working on trying to figure out TYKERB resistance. The opening up and sharing is amazing even though we are not researchers. They want us to know that they KNOW the pitfalls of the drugs we have and are working on new generations.
I have run across more trials opening up in my wandering through this exhibition CAVERNOUS hall. Will post more on the trials section of this site when I am home.
This evening we are going to the Genentech reception at 7pm. The marketing people are not here, so we don't know who we will meet, but we have already spoken to some researchers from Genentech and will meet more.
Another exciting area I want to mention before I close is the research going on for monitoring our disease. There is a lot of work in developing more sensitive tests and imaging.
There is a line of people waiting for these computers that are here with the compliments of the conference organizers.
Ciao! for now!
__________________
"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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04-14-2008, 05:13 PM
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#13
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Thanks for sharing the photos and for being there.
Joan
__________________
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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04-14-2008, 05:53 PM
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#14
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Wow, thanks to all of you for the updates, and thanks, Joe for all of the great pictures. Someone tried to take Tex! I'm glad you guys reacted quickly and saved him. And I think it's really cool that now there's a chicken with no name in the group. "..been through the desert on a chicken with no name....."
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04-14-2008, 07:57 PM
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#15
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Senior Member
Join Date: Apr 2008
Location: NY
Posts: 240
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Thanks soooo much for posting the pictures and updates! If it's exciting for me to read this, I can only imagine how exciting it is to BE THERE!! Keep posting - and enjoy yourselves!
__________________
xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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04-14-2008, 08:03 PM
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#16
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Thanks for the pictures and the updates. I look forward to more of both!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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04-14-2008, 09:38 PM
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#17
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Senior Member
Join Date: Feb 2007
Location: Cordoba, Mexico
Posts: 672
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Ladies,
You look so excited ant transmit so much energy through your words that I really envy (good envy of course!) you. Good for you girls!! Learn and enjoy, enjoy,
enjoy!!! it is sooo interested that you got to know the Drs. that developed herceptin. You are (and we all are too!) living proof of what they have developed. Thanks for the pictures and keep enjoying the event.
__________________
Dx. June 30th, 2006 at age 43
Lumpectomy rt breast
2.2 cm tumor, 13 nodes all negative
ER-PR+,her2+++
6 FAC
32 Rads
Dx. Lung fibrosis due to radiation
Ended 1 year herceptin in March, 2008
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04-15-2008, 05:02 PM
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#18
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Senior Member
Join Date: Jun 2006
Location: Bradenton,FL
Posts: 977
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Dear Steph,Christine,Mayanne,and Joe,
Thank you so much for filling us in. I have been to few conferences and the air is always filled with excitement. (Plus they usually have some great give aways,LOL). I know you are all representing us well,THANK YOU! gIve those Her2 researchers a few hugs for us,
Marcia
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04-16-2008, 12:18 AM
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#19
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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WOW!!!! THANK YOU SO much for the updated information at the symposium!! I can feel the excitement just reading what you both had to tell us and I can feel the energy in your words!!!
Amazing and oh so awesome!!!!
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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04-16-2008, 10:42 AM
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#20
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Thank you ALL so much
it is so great to ready and see pictures of what is going on there. It sounds so exciting to be able to be a part of all of this. I would love to make it to San Antonio this year if I could.
Thank you all again for being there for 'all of us" and keep those pictures coming.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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