HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 11-25-2006, 08:59 PM   #1
Heart Sutra
Senior Member
 
Heart Sutra's Avatar
 
Join Date: Nov 2006
Location: The Hudson Valley, New York
Posts: 124
Hello from a newbie

Thank you for being here.
I saw this site a couple of weeks ago when my beloved was diagnosed with Her2 3+ positive IDC, rated III/III. Tumor is about 2cm.
She is scheduled for a modified mastectomy on Dec. 5th ( first surgery was rescheduled due to surgical office staff incompetence), and as you all know, we'll know more then. We will post what we learn.
We're scared...
What I've learned thus far is that it is easy to find conflicting information about any of the myriad aspects of this disease. Even this topic of being Her2 positive is not one sided simple.
This is why my partner, Sue, stays away from the internet. For me, I've been searching for information as if I could discover a cure...desperation does that. And although I don't feel desperate, I know that I am, for she is all the world to me and I want her to be healthy and happy.
For the most part we're positive, but those other moments do come. I'm sure you know...
I am truly grateful to all of you who've shared your stories, you serve others more than you might know. Thank you a million times.
---Kevin---
Heart Sutra is offline   Reply With Quote
Old 11-25-2006, 10:37 PM   #2
michele u
Senior Member
 
michele u's Avatar
 
Join Date: Nov 2004
Location: Henderson, NE
Posts: 413
Kevin,

This is the right place to be. We've all been through this. I was dx 2003 with stage 3b Her2 pos er/pr neg. breast cancer. I had 35 pos nodes. I did the Herceptin adjuvant trial and am here with no recurrence. It sounds like they don't know what stage yet right? Hang in there. It DOES get easier. The first 6 months were the hardest. there is alot of hope, don't let anyone take that from you both. Ask any questions, we will be here for you!
__________________
Michele Ulmer

dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
michele u is offline   Reply With Quote
Old 11-25-2006, 11:12 PM   #3
Lolly
Senior Member
 
Lolly's Avatar
 
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
Kevin, I'm sure you know that it's one day at a time right now, but the internet can be a great resource. Also scary though. Try not to let the more negative aspects of this type of cancer throw you. As Michele says, there's much hope.

<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.
Lolly is offline   Reply With Quote
Old 11-26-2006, 05:36 AM   #4
Mary Anne in TX
Senior Member
 
Mary Anne in TX's Avatar
 
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
Hope does abound, especially in the hearts and souls of the incredible women on this site! Sometimes my research scares me spitless, but I just take a deep breath and keep on, soon finding that little spark or even a flame of encouragement in the courage and power of those who have paved the way for us. Keep learning, and most of all, keep believing in the victory you seek. Every time I ask questions, I get not just answers, but a big hope boost! Keep making memorable moments together ... they will get you through the tough times. Best wishes for a peaceful day,
__________________
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!
Mary Anne in TX is offline   Reply With Quote
Old 11-26-2006, 12:05 PM   #5
SusanV
Senior Member
 
SusanV's Avatar
 
Join Date: Aug 2006
Location: PA
Posts: 188
Kevin,


Please keep us posted on Sue's progress....share with her the good news that you find on the internet, and on this site. Sounds like one thing is for sure, she has a great support system in you !!!! These unbearable/difficult times are easier when shared with the one you love. I wish you all the best.
__________________
Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
SusanV is offline   Reply With Quote
Old 11-26-2006, 05:30 PM   #6
chrisy
Senior Member
 
chrisy's Avatar
 
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Kevin,

I'm so sorry you and Sue are having to face this, but glad that you are facing it together. It is really hard for the loved ones - but you are helping by being there for her and by searching for information. Knowledge is power.

As you may have read by now, the Her2+ cancer WAS associated with poor prognosis. I say WAS because those statistics were before the use of adjuvant Herceptin. Now it is considered by some to be one of the more favorable diagnoses. So please do not be disheartened by all the doom and gloom - the game has changed significantly just in the past year.

Take it one step at a time.

Take care
chris
__________________
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
chrisy is offline   Reply With Quote
Old 11-28-2006, 11:43 AM   #7
lightsteve
Senior Member
 
Join Date: Oct 2006
Location: Connecticut, USA
Posts: 29
Kevin and Sue:

we are wishing you the best of luck. Stressful times, for sure. My wife and I have been on this road for 3 years and while it has been difficult it has also brought us closer together. Like you, I am the one doing the prowling through the internet and other resources. This gives me a role as advocate and simplifies things for Sarah, if only slightly. It works for us. I recommend the book Breast Cancer Husband by Marc Silver, it is very amusing and completely distinct in its perspective from the spouse/partner point of view.

Steve
__________________
Sarah's history:
DX Sept 03 Stage 2B Grade 3
BRCA 1 positive
RT Mastectomy
4 cm lobular 1+node ER-/PR- Her2+
chemo 2004:
4 cycles AC
4 cycles Taxol
herceptin 2004-2005
june 06 stage IV: lung, bones
weekly taxol
1/3wk herceptin
Oct/November 06: new primary left breast
ductal 4cm+
mastectomy
lightsteve is offline   Reply With Quote
Old 11-28-2006, 09:29 PM   #8
Vanessa
Senior Member
 
Vanessa's Avatar
 
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
Welcome to the board. I am so sorry that you and Sue are going through this difficult time. I first found out I had bc in April of this year. It has been a hard road and this site has given me some hope. I hope it does the same for you and Sue. Best wishes.
Vanessa is offline   Reply With Quote
Old 11-29-2006, 04:27 AM   #9
VirginiaGirl
Senior Member
 
Join Date: Oct 2006
Location: Fredericksburg, VA
Posts: 93
Dear Kevin & Sue,
Everyone's replies have said it all. My family & I found after my dx that researching info on the net was a lifesaver - though definitely scarely, it gave me a greater sense of control to be able to get info. It made me realize how little I had known about my dad's stomach cancer 11 years ago, and made me very grateful for the ease of the net, even though you have to sift through a lot. When I start feeling overwhelmed by it, I turn it off and come back another day! I guess that's true for all the feelings, as well. Each day will be different, and there's no telling why you feel despair one day and hopeful and positive the next! Sue is a lucky lady to have you on her team. Keep in touch.
Peace
__________________
Liz
3/05 Initial dx invasive dc 2 cm lump, age 39
lumpectomy & 3 of 5 nodes +, ER+/PR+, Her2+++
alternative chemo 5/05-7/05, rad 8/05-10/05
7/06 dx mets to vertebrae, pelvis & chest lymph nodes
8/06 - 10/06 tamoxifen, herceptin, oophorectomy & zometa
11/06 PET/CT showed continued bone mets, new spot on liver
12/06 began taxotere/herceptin 1x/3 weeks,
2/07 - 2-08 NED!
3/08 progression, start taxol/herceptin weekly, monthly zometa
8/08 start ai & herceptin
12/08 - progression, start weekly navelbine/herceptin thru 6/09 & monthly zometa
7/09 - PET/CT showed improvement in spine, but 2-3 lymph nodes in chest became active
9/09 - 11/09 - weekly abraxane/herceptin
12/09 - PET/CT - chest lymph nodes resolved, progression in spine & pelvis
2/10 - 6/10 - start tykerb/xeloda, progession in spine & pelvis
7/10 - start taxotere/carboplatin/herceptin

VirginiaGirl is offline   Reply With Quote
Old 11-29-2006, 06:49 AM   #10
tousled1
Senior Member
 
tousled1's Avatar
 
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
Kevin,

Sue is very lucky that she has such a concerned, loving partner. When you first hear the words "You have cancer" your heart just drops. You have come to the right place. Here on this board you will find support, compassion, and most importantly a wealth of first hand experience. I'm truly sorry that you have to be here and wish you and Sue the best. I will keep you both in my prayers.
__________________
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
tousled1 is offline   Reply With Quote
Old 11-30-2006, 05:40 PM   #11
Heart Sutra
Senior Member
 
Heart Sutra's Avatar
 
Join Date: Nov 2006
Location: The Hudson Valley, New York
Posts: 124
Thank you all so much. I wish I could thank each of you one at a time, but the list grew so fast! How fortunate are we to have that complaint? Please know that every word has been a help, every thought has been so appreciated. Thank you for your time and compassion. It is truly impressive and humbling.

As the surgery date gets closer, anxiety is getting higher.

Suddenly all the "what ifs" come to the surface. We're both pretty grounded, and we take our realism seriously (ha!) but those moments of doubt do come. Pretty normal response I guess. Sue talks about not becoming a schedule. What she means is having the anxiety of tests becoming a dominant part of life. I imagine that for a time it can't be avoided, I can also see the day when it won't rule us.
We are starting to feel like we know some of you, and both of us are always happy when we hear from you. Keep talking us through this, you help so much.

We've heard such good advice from all of you here, and we know we're not alone. It is a blessing to have found this site.
P.S. for those of you who think we're married... only in the way that counts, heart and soul, complete.

---Kevin and Sue---
Heart Sutra is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 11:53 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter