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10-06-2008, 03:50 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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A pattern seems to be developing...
To all my "sisters" - thank you for your feedback; and for those who have yet to log on, please keep it coming!
It seems like I see a pattern developing. It looks like we are staying on Herceptin for 9 - 10 years if our cardio can take it; then going off. Scans seem to settle at every 6 months. I also noted that in this small number of long term Herceptin users, at least 2 of us participated in the U of W vaccination trial. (Me and Kim from CA....anyone else?!)
And Lani, you are kind to attach articles, but darn it, I couldn't get them to open up. I will try on my own to search relevant articles.
Keep it coming angels! Stay well and strong!
Love Kim from CT
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10-06-2008, 09:15 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Dear Kim -
Great to learn that you are still doing so well and here "taking advice." Way to go, Lady!
I still get my Herceptin each three weeks. I did take a short 3-month "Herceptin Holiday" beginning of 2007, but huge stresses came along that I had no control over and I did not like feeling that my body was to at its best as well as unprotected from a cancer flare-up. So cut it short at the 3 months.
Used the Bayer (now Siemens) HER2 serum test three times and had nearly the same result each time.
I asked to have it again recently and my onc replied that she did not feel it was necessary as my other markers are taken regularly and have not moved. She would order it if there was suspicion of progression, since I have a solid baseline.
Scans to check body are PET/CT every 6 months, only this next time I am just having a plain CT (my idea).
My MUGA did drop some this last time, but we feel it happened due to other causes than Herceptin. It will be checked at 6 months instead of a year.
__________________
"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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10-07-2008, 02:47 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Melbourne Victoria
Australia
Posts: 330
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having a herceptin holiday
I suggested having a break to my onc. who was not particularly in favour of it due to no studies being done. I would like to have one if I continue NED for another year...but I would like to have the her 2 test to monitor..this is not available in Australia yet.
I am keen to hear of others responding to this thread!
Jackie
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10-07-2008, 10:02 AM
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#4
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Yay Kim!
Gosh it was great to hear from you and under such good circumstances. I am so excited that your helath seems so good. I don't have a lot of advice for you regarding herceptin. I just wanted to say Hi and Yay! Oh, and could you refresh me on which vaccine trial you participated in and do you credit that with your success? Only if you have time. My best wishes for continued goodness!
__________________
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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10-07-2008, 01:08 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
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Hey Joy!
Hi and Yay back at you!
Since I started my "poll" it has felt like I was coming back home...it warms my heart to see you, and Vi...Pattyz, Mary Jo, Kim in CA, Lani, StephN....all doing well and all getting on with your lives.
Joy, I don't know what to credit for my good health...some say it is an answer to prayer and yet we all know some very spiritual and devout people who have died. Some say it is my diet. Some feel it is the vaccine from U of W. (as an aside, Dr. Disis did say I was a responder). And of course there is Herceptin which I am sure is the primary reason I seem to hang in there. I just truly don't know; all I do know is that I am just so grateful to have these healthy years while I raise my 4 kids. I admit to feeling a bit of "survivor's guilt"
I am anguished to see that yours has progressed to your liver. Where is the justice?? Is your current cocktail holding it stable?
Stay well angel; your joy is inspirational.
Love Kim from Ct
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10-07-2008, 01:21 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Stopping Herceptin
It's great to read your posts again, Kim. It's also encouraging to hear that more of us are thinking about taking a break from Herceptin. I'm not there yet, but I'm on a trial (Herceptin MCC- DM1) that seems to be working for me. I hope some day to have the opportunity to take a break.
Do not feel guilty. We are so pleased to hear your good news.
Best wishes,
Barbara H.
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10-07-2008, 07:08 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Hi Kim
I just had to say hello. Oddly, I got an email from Vicki today and hadn't heard from her in quite awhile.
If I were you, I would make an appointment to see Eric Winer at Dana Farber (since it is not extraordinarily a long drive for you) and discuss with him what his opinion is about going off of Herceptin (or lengthening the time between infusions - a weaning off process perhaps). Dr. Winer is an expert in Her2 bc as well and may be able to give some good advice to you on this subject.
Big hug to you!
Love, Becky
__________________
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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11-19-2008, 01:02 PM
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#8
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Senior Member
Join Date: Aug 2007
Location: Newport Beach, CA
Posts: 161
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Hi Kim, it's so nice to hear from you
What a treat to hear from you, Kim, and I've been joining in more lately, too, as Becky mentioned. Funny how we all surface about the same time around and I'm glad for that!
I can't offer any suggestions, but it sounds like you gleaned what you needed from all these great responses.
Miss you and glad you are doing fab,
XOXOXO,
Vicki
__________________
Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
Bloom-Richardson score 8/9, P53+ 60-70%, Ki-67+ 30-40%
Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
Chemo: FAC, five sessions every three weeks Feb.-May 04, then switched to HTC weekly for 12 weeks, June-Aug 04
Zometa every 6 months for osteopenia, started April 09
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