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12-04-2006, 07:47 PM
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#1
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Senior Member
Join Date: Nov 2006
Location: The Hudson Valley, New York
Posts: 124
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'Twas the night before surgery (updated 12-6-06)
...and we're scared.
Not of surgery, but of the overall prognosis of HER2 positive survival rates.
We can find statistics that are very poor, and some that aren't so bad, but great statistics...?
It's only been about 2 months since diagnosis, we feel battered a lot of the time, and we forget it all a lot of the time too. But remembering it over and over throughout the day is so hard.
It is a scary diagnosis, HER2 positive cancer.
It is our desire for things to be different than they are that is causing all this emotional pain. That much is obvious. How could it be otherwise?
sometimes it seems better to not have these great big brains that think so fast, conclude so much, infer all possibilities, tell such scary tales...
Sometimes it is easy to envy our dog, lost in sleep for the 10th time today.
We'll let you all know how surgery went. Thanks for all of your support.
---Kevin and Sue---
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12-04-2006, 08:30 PM
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#2
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Try not to worry. Turn all your attention to recuperating from surgery. There will be new study results from ASCO this month. I'm sure it will be more positive news. This roller coaster we're on has good days too. Best of luck with the surgery. BB
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12-04-2006, 09:51 PM
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#3
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Kevin & Sue,
Try not to worry too much - I know it's hard not to. As for statistics for HER2 breast cancer you can throw out all the stats that you've seen. With Herceptin the stats are ever changing. Just look at the women on this board and what they have been through and are still here and NED. Your main concern right now should be concentrating on recovery from surgery. I'm sure the surgery will go as expected. Just make sure that your wife starts moving the arms immediately. I'll keep you 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
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12-05-2006, 03:38 AM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Positive thoughts speeding your way!!
Kevin and Sue
Hi and just want to wish you a sucessful surgery Sue and
a quick recovery.
Her2 positive cancer IS scary for me too but we have to
remember most of the info we read is totally out of date and
pre herceptin so just take one thing at a time and the rest
will wait till tomorrow!
Good luck
Tricia
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12-05-2006, 05:55 AM
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#5
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Senior Member
Join Date: Dec 2005
Location: virginia
Posts: 99
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Big brains that
think so fast, conclude so much ......so very thankful for them!! All those "big Brains" will bring new info to ASCO this month and maybe there will be another cheering section for all the new meds aimed at HER2. Yeah !! As many have stated...we are rewriting the HER2 stats every day!! Just get strong after surgery and do the range of motion for the arms. Will need those arms for hugging all the loved ones for years and years!
Hugs, Bonnie
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12-05-2006, 07:34 AM
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#6
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Senior Member
Join Date: Oct 2006
Location: Connecticut, USA
Posts: 29
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Kevin and Sue:
We're with you all the way, you are in our thoughts and prayers.
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
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12-05-2006, 07:50 AM
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#7
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Things do calm down after a while. THere is much to be hopeful about. Your support is a great gift to Sue. Hug Sue -- carefully -- and hug the dog. I came to have great appreciation for the care I received from the nurses. MJO
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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12-05-2006, 10:04 AM
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#8
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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We can all relate to your fear,
but I promise it DOES improve. Just concentrate on positive thoughts for
a successful surgery and fast recovery. Will keep Sue in my prayers.
Jean
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12-05-2006, 10:59 AM
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#9
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I always have to remember (for myself) that when you read 10 year survival rates it is based on those who are 10 year survivors (duh). BUT they also using 10 yr old technology to get there. Look what's happened in 10 yrs
CMF to CAF
adding taxanes
dense dose therapy
and now Herceptin
I am sure I have forgotten zillions of other examples of progress. AIs to be sure. I think you understand what I am getting at here.
Also the future - Tykerb, Avastin and all the other drugs and research - just for the Her pathways. Researchers love us thank God!
There is a lot to be hopeful for.
__________________
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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12-05-2006, 12:05 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Ohio
Posts: 212
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Sending you both good wishes for a successful surgery and smooth & speedy recovery! Sue might enjoy having lots of pillows in bed to prop up her arms. (I remember having my dog snuggling on the bed with me when I got home was so comforting, too) Five year ago, after my diagnosis, I would spend hours on the internet looking up survival stats and become SO discouraged. (My mantra was "I'm doomed")--Fortunately, I found this site and started connecting with other young, Her2+ survivors. Those stats are OLD and outdated. So many of us are doing well now and there is so much reason to hope! I'm hoping you both can take the life lessons this experience offers and then move on to 2007 leaving the fear behind.
__________________
Audrey
diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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12-05-2006, 06:19 PM
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#11
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I hope Sue's surgery and recovery goes smoothly. Both of you will be in my prayers. Also, herceptin has made my test results much better than we could have imagined. The stats are getting better!
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12-05-2006, 06:27 PM
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#12
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Dog's Life . . . .
I look at my two dogs some days and wish I could trade places too! But it's us humans that make those dog's lives so good!!!!!
My surgery was really easy and I recovered easily and quickly. And it gave me hope for things to come. I just keep focusing on "the next step"!
Turn off your mind for a few days and just take it hour by hour as this step gets done and you check that one off!
Lots of good wishes and prayers are on the way,
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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12-05-2006, 08:01 PM
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#13
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Senior Member
Join Date: Nov 2006
Location: The Hudson Valley, New York
Posts: 124
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All of you people are so amazing. I mentioned this site a hundred times since I've found it. I cannot even begin to express my gratitude for having found you all. You have all been so wonderful to us.
I just came home from the hospital. Sue is in dreamland via sedatives and looks great, sounds great. She is very happy.
We had the best news we could have hoped for. Her nodes were negative. Her plastic surgeon said the expander surgery was perfect, her primary surgeon said the mastectomy was very easy and smooth.
We still have to wait for the complete pathology report regarding the nodes, which takes a little while, but we are thrilled with the news so far, and we're going to go right ahead and think that it's what the doc said it is. Crazy, huh? Sue should be home tomorrow.
As far as the little mini-Dachshund...
The dog's life is still easier than mine, but of course it isn't nearly as rich. He has us, but he doesn't have you.
Thank you for being here.
---Kevin and Sue---
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12-05-2006, 08:41 PM
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#14
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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That is just wonderful news to hear Sue had negative nodes.  Its nice she has the surgery out of the way and behind her now. Sounds like she is doing well and I am sure she will be happy to get home tomorrow to her own bed.
She is a lucky lady to have such a supportive man by her side. Believe me..that will help her a great deal. Thanks for updating us and you guys hang in there...you will get through this. Take one day at a time.
Sending Sue warm healing thoughts.
Chelee
__________________
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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12-05-2006, 09:52 PM
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#15
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Wonderful news! Glad that Sue is doing so well and that there was no node involvement. Now you can both breath a big sigh of relief. She's very fortunate to have such a wonderful supportive husband.
__________________
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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12-06-2006, 06:09 AM
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#16
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Senior Member
Join Date: Nov 2006
Location: The Hudson Valley, New York
Posts: 124
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Sue doesn't have a supportive husband, she does have a supportive partner though. Cancer is not even close to being big enough to change that.
So, for this moment she doesn't have a supportive husband. But what's the saying?... And this too shall pass 
---Kevin and Sue--- |
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12-06-2006, 06:21 AM
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#17
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Well husband or partner Sue is extremely fortunate to have you Kevin as she goes through all this. Breast cancer is a dreadful disease! Loosing a breast is a major emotional blow to women. I'm sure you will give her all the comfort and understanding that she will so desparetly need right now. Just make sure that she exercises her arms. Please keep us posted on her progress.
__________________
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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12-06-2006, 09:26 AM
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#18
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Glad to hear the surgery is done and she is doing well. You can throw away the stats as I got hung up on those starting out on my journey. Being Her2 pos. and IBC meant double trouble for me and I got a death sentence thrown at me. I am nearly 6 years out and doing well-we know the cancer is not gone but it is stable!! I learned stats can be change depending on what they are needed for so I don't pay any attention to them anymore. Like it has been mentioned here things are changing, new treatments, old ones being used but given in a different way so they are easier to tolerate and work better. Quality of life is being looked at. I hope this helps and you both can live life to the fullest because soon you will realize how precious each day is. Sending you both a big hug, Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!
I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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