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03-08-2007, 12:21 PM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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the name of the game for now is...
STABLE DISEASE. I think that is good, right? I will stay on Navelbine and herceptin with a re-evaluation of things in 8 weeks. Which is what I was hoping for, for now. There was glucose uptake in the liver as we knew there would be and we were never sure about the bone spots and they glowed too. And there is section of the lungs that took the glucose as well. We have not been certain of bone and lung involvement, but I guess it is true. Now that being said, those spots on the past many CT's have not seemed to change at all as compared to the liver lesions which react quite a bit to treatments that work and to those that don't. Any thoughts? My lungs have not changed, and I'll confirm with my sister-keeper of the records, in years. So my question has always been, if the liver tumors change acccordingly why don't these weird spots on the lungs?
Anyway, tykerb came up and she thought that March 30th was the date, but it sounded like she wasn't sure what date to believe. And she mentioned doing that with xeloda in the future. She looked at the data from San Antonio regarding Herceptin and Avastin and is hopeful that bigger studies will be done. She said if we need it we will use it, but she wanted a little more data to be put out. She keeps mentioning either Doxil or Epirubicin as good choices, but, and here is where I whine, I don't wanna do Doxil or Epirubicin!
I still want to pursue the SIR spheres, but not sure if it would be done since according to the PET, the liver is not the only site. I just think it still would be a good choice to reduce the burden in the liver.
I still want the disease to go away too.
Bottom line, I'm getting my hair done.
Thank you so much for your thoughts, ideas and your prayers and support.
__________________
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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03-08-2007, 12:46 PM
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#2
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Joy - I would say stable disease is good. I know you wanted to be able to stay on Navelbine and for now you will. I don't have the answers for your questions, but I'm sure you will receive them from others in the know on this site. I just want to give you all of my best positive wishes, and hope that you will find some combination that will kick those cancer cells in the behind and you get the improvements that you would like. I don't know you personally, but you always seem like such a ray of sunshine on this site. "Keep fightin"
__________________
Andi
-- ------------------------
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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03-08-2007, 12:56 PM
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#3
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Hi Joy,
Stable disease is good - keep up the faith - it sounds like you dr. really thinks things through ... hope your hairdo was good.
Best regards,
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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03-08-2007, 01:29 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Joy,
Stable is good. I hope that you love your new hair cut and have a great vacation!
Carolyns
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03-08-2007, 01:53 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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I am so happy stable is so good! Get you hair done pamper yourself and know your in my prayers! WOO HOO!
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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03-08-2007, 03:06 PM
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#6
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Joy, stable is good news. It seems to me that your oncologist is really on top of things. Keep up the good work and have fun getting your hair done. You're a great inspiration and your positive attitude is wonderful.
__________________
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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03-08-2007, 03:36 PM
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#7
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Repeat after me, Stable Is Good 
Are you getting highlights?
<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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03-08-2007, 05:14 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Hi Joy,
I think we can all relate that you want to be disease free. That being said, I'm glad for you that your results at least showed stable disease. It will be treat a to get your hair done. I enjoyed hearing about your children in your last post.
I am currently NED everywhere but in the bones and the mets are progressing. I am waiting for the results of the biopsy I had a week ago to determine treatment. Navelbine worked for me from last March until December when my CEA started to rise, but it was at least normal. Now its out of the normal range at 5.3 (3 weeks ago) and Navebine will not be an option.
Again, best wishes and I do hope at some point that you get your wish.
Barbara H.
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03-08-2007, 05:42 PM
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#9
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Senior Member
Join Date: Dec 2005
Location: Illinois
Posts: 327
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I have had no spots show up on PET/CT and had liver MRI showing a spot. It's hard to tell and hard to figure out what to think about it. It's definetly a science...and PRACTICE in medicine.
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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03-08-2007, 05:51 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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I am joyful! Stable is not good - its GREAT!!
Good news and I am so happy for you.
Hugs and kisses
__________________
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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03-08-2007, 09:12 PM
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#11
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Senior Member
Join Date: Sep 2005
Posts: 589
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Hi Joy,
May you have decades of stable disease!
Eric
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03-08-2007, 09:25 PM
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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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Dear Joy,
Everyone before me has said it, but I will repeat,
"Stable is good, great, remain stable for decades"
Sounds like you were reaching for the moon and you got a shining star! Yipee!
Stable is very goooooooooooood!
Hugs,
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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03-08-2007, 09:36 PM
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#13
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Joy, everyone is right here, they always are right...stable is great news. Here's to a new hairdo. Go out and celebrate your being stable with your new do! Never lose that positive attitude and great outlook. You are an inspiration to many.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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03-08-2007, 09:37 PM
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#14
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Joy, glad to hear you're stable. I'm curious about the doxil and epirubicin. As cousins to adriomycin, which you already have had, I didn't think they repeated these types of regimens.I guess you'll have to ask the onc why she is recommending this over the Herceptin + tx.
Have fun with the haircut, BB
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03-09-2007, 05:33 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Joy-
The chorus is rising: stable is good! I know what you mean about navelbine vs. doxil or epirubicin. I had E with my initial tratement, so after I came off of xeloda/tykerb, my onc recommended doxil, with avastin and herceptin. I guess it works for some, but it sure didn't work for me... I took 3 treatments, and was supposed to have 4, but wouldn't take it until we cot a CT scan, and it showed progression, so we never did the 4th...
I switched to Navelbine/herceptin/avastin, and felt better on that within weeks. I never hear of that many women on doxil, and perhaps we'll hear some success stories, as there must be somer eason they're using it!!
In the meantime, hang in there, and it's nice to have that family support.
Regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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03-09-2007, 07:50 AM
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#16
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Senior Member
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
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Good Morning, Joy! Stable is very good as the others say. There are still many tratment options out there and since Most Oncs are know treating this disease as a chronic one (like arthritis and diabetes), the word stable is even better. I will go on Xeloda, myself, in a few weeks (just taking a rest for now) to keep any tumors from arising. My Onc thinks that with IBC, you keep fighting it's recurrance with small doses of differnet agents all the time with rests in between since this cancer seems to spread like wild-fire. I had my hair done a couple of days ago and it's amazing how much that helps. Have fun on your vacation! We're leaving for a few days of skiing this morning. Much love, Vickie
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03-09-2007, 08:24 AM
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#17
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Senior Member
Join Date: Jan 2006
Location: ALEXANDRIA, VA
Posts: 40
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Joy, Yes, that is Great News ...May you continue on this path ... Keeping
that great attitude... Us stage 4'oers know that word is acceptable and
full of hope ... Enjoy your day...
God Bless,
Debbie
__________________
dx stage 4 ... 11/04
3.2 cm mass breast & liver mets..
her2 +++ ; er- ; pr -;
11/04 treated with hercp, taxol & carboplatin - every 3 wks
3/05 ned - stopped chemo; hercp only
5/05 reoccurence left breast
6/05 added navelbiene w/ hercp every other wk
7/05 mascetomy
12/05 ned ; same regiment- every 3 wks
3/06 & 7/06 ned
9/06 stopped navelbiene.. hercp only.. every 3 wks;
10/06 pet scan shows positive lymph node in pec
12/06 PET no change;
4/07 scan showed 4 abnormal nodes in right pec area ... these have increased in activity since last scan... will start back on weekly navelbeine & hercp
7/07 PET done ..this time it showed new nodules in both right & left lung area as well as increased activity in pec area..
8/07 started Taxol & Carboplatin with Hercp every 3 wks
10/07 PET done ...Great Report ... NED ....
11/07 continue with Hercp every 3 wks & do Taxol & Carboplatin every 6 wks
4/09 still on same regiment; 1 positive node in left lung and right pec area
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