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Old 04-20-2007, 09:50 PM   #1
justnina
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Herceptin without Taxol?

Hi all,

First time to ask questions but I've been reading and learning, thanks to all of you!
Back story:
I was diagnosed last year with 1.3cm IDC, sentinal node biopsy neg.,Her3+,ER+PR+. My Oncotype DX score was 27. I had a partial mastectomy, (clear margins),dose-dense A/C, 4 rounds, 2 weeks apart, and dose-dense radiation, (I was given this choice) every
day for 15 days. I was then started on Herceptin, every three weeks, but was never offered Taxol. It appears that, from what I've read, it's typical to give the two together. I asked my onc about Taxol and she said since I was stage 1 she didn't think I needed it. Has anyone else been given the same advice?

As it turned out I was only able to finish 7 months of Herceptin due to ejection fraction problems-the first time it happened I took a six-week break from Herceptin and my e. fraction went back to normal. Restarted Herceptin and it nose-dived again. At that point my onc advised me to quit altogether because she said that "it has not been proven that a full year of Herceptin is actually necessary" and she also said that she "didn't want to cure my cancer and leave me with heart trouble." Anyone get similar advice?

PS: My hair is coming in curly--new for me but I've heard it's pretty common-how long does it stay curly?? Just wondering...

Thanks for staying with me through this looong e-mail...

All good wishes,

Nina
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Old 04-20-2007, 10:19 PM   #2
Jean
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Justnina,

I am stage 1 and I had taxotere plus herceptin.
Will finish my one yr. shortly.
Hope this helps you.

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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Old 04-21-2007, 01:20 AM   #3
hutchibk
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hmmm - I think many docs feel that way about stage 1... I got taxol and herc only after I had recurrence, but I also didn't get herc as a first line drug either. It wasn't available in wide access at that time. I had to wait for recurrence before I could get it.

I am curious as to others answers here.
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 04-21-2007, 06:57 AM   #4
Hopeful
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Justnina,

You joined the board after the thread below was posted, so I don't know if you saw it. It may contain information that could be useful to you: http://her2support.org/vbulletin/sho...eferrerid=1173

Best of luck with your treatment.

Hopeful
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Old 04-21-2007, 08:23 AM   #5
justnina
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Thanks so much for sending this thread. I hadn't seen it and the last post helped me to understand my onc's reasoning. She's well-respected in the New york area where I live and I do trust her opinion but didn't understand it.

Once again, this wonderful Web site has come through for me. !!!

Nina
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Old 04-21-2007, 09:13 AM   #6
penelope
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Yup same thing happened to me. My onc said that given my 7mm tumor taxene's were only a 1% benefit to me but I was able to finish 1 year.

I read all these women having AC+TH and know that I did not get T and it scares the crap out of me. But 1%!!! That did not sould worth it. I wonder what the absolute risk reduction was for AC followed by H. What were you quoted?
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Old 04-22-2007, 08:49 PM   #7
justnina
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Hi Penelope,
I'm afraid I wasn't given any statistics. I wish I had asked!
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Old 04-23-2007, 06:14 AM   #8
momdeeco
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I had to seek a 2nd opinion for Herceptin. I also asked the doc about taxol and neither one thought it was necessary. I had to stop Herceptin after 6 mo. due to ejection fraction. Both oncologist agreed to discontinue the Herceptin and not restart it because it hasn's been proven that 1 year is best. Very similar to your situation. She didn't want to "cure" cancer and cause heart failure.

Isn't it exciting when your hair starts to come back in! I have been done with chemo for about 1 year, and my hair is still very curly. I love it though! Takes me about 60 sec. in the morning to get it ready to go. It is wash, dry, fluff!
I've had many haircuts since last April, and think I will keep it short as long as it stays curly!

God Bless,
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Karla
8/05 NORMAL MAMMO
11/05 DX AFTER FINDING LUMP AGE 47
STAGE 1 HIGH RISK
1.1 CM/NODE NEG
ER-/PR- HER 2 +++ GRADE 3
12/05 PARTIAL MASTECTOMY
1/06 CHEMO AC DD X 6
5/06 RADS X 30
10/06 STARTED HERCEPTIN AFTER 3RD OPINION
3/07 GENETIC TESTING-GENE VARIANT FOR BRCA 1 AND 2
3/07 STOPPED HERCPTIN DUE TO LOW EF
BSO 8/08 (P53 SIGNATURE--PRECANCEROUS CELLS)
11/08---IN A STUDY/MRI EVERY 6 MONTHS/MAMMO EVERY YEAR
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Old 04-23-2007, 07:02 AM   #9
justnina
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Thanks so much for your reply. Your situation does resemble mine and that gives me a lot of reassurance.

As for my hair, I certainly agree. It's easy to care for. But I'm not at the point where I can bear to cut it yet. I'm too attached to it(literally and figuratively) because I'm so happy it's back!!
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