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05-04-2007, 11:39 AM
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#1
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Senior Member
Join Date: Feb 2007
Posts: 27
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Herceptin and care questions
I had a lumpectomy and sentinel node biopsy December 12th. Clear margins - my radiologist said smaller than he likes to see, but still clear, 5 nodes removed, all clear. Had DCIS and IDC - .9 cm. I am 56 years old, have gone through menopause, ER+, PR+, Stage 1, Grade 2, Her2 Positive. Did seven weeks of radiation, with the last eight, being the boost. Originally, my oncologist did not recommend chemo, which was why I started with radiation.
When I had the oncotype dx test done, it showed I had a high rate of recurrence. With that in mind, my onc recommended four doses of A/C. Just had my third yesterday.
Last Friday I went to another onc in Walla Walla, Washington. Wanted a second opinion. My original onc hadn't ordered any heart tests before A/C and also seems reluctant to prescribe Herceptin. The onc in Walla Walla thought I didn't need heart scans with only the four doses of A/C but would benefit from taxol with Herceptin after the A/C.
When I spoke to my original onc yesterday about all of this, he didn't think the taxol was warranted, but possibly a 12 week regimen of Herceptin.
Also, my original onc was proposing tamoxifen, whereas the one I consulted for a second opinion, thought Femara or Arimidex would be better.
I am so tired and confused about what to do. I feel like I really need to have the Herceptin, but is a 12 week regimen good or not? Have most of you used taxol along with the Herceptin? And is tamoxifen a good option or would Femara or Arimidex be better?
I know you are not doctors. I am just interested in what your experiences have been. Thank-you so much. I have received so much info and encouragement on this site. I pray for each and every one of you and keep you in my thoughts.
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05-04-2007, 12:33 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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There are so many knowledgeable ladies on here who will be able to help you weed through all of this, but I know that were it me, I would definitely push for Herceptin. I don't know about it in combo as a first line, because it wasn't first line when I was originally diagnosed. I was able to get Herceptin only after recurrence, first with Taxol and Carbo, then a year later with Taxol only.
I know you will hear from some ladies here who will have some answers for you, but given the opportunity, I would definitely do the muga after A/C and jump on the Herceptin.
__________________
Brenda
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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05-04-2007, 02:07 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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You can see by my signature what I have done so far! My understanding is that Arimidex (aromatase inhibitor) is prescribed after menopause. I also recommend a MUGA scan after A/C and before herceptin. My oncotype DX showed a high intermediate risk of recurrence...it seems that most Her2 cases have a high oncotype score...I decided to do the chemo as prevention, although my oncologist would have done Herceptin without chemo. I wanted to be as agressive as possible from the start!
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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05-04-2007, 04:02 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hi Sheryl!
You can see that my onc in San Antonio treated me and continues to treat me agressively. I am not PR/E +, but HER2 +++. I don't know what is best for you, but I love my agressive doctor. 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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05-04-2007, 06:52 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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It is well known that Taxol is a great drug for Her2+ breast cancer. It is also a drug that works very synergistically with Herceptin. About half the Stage 1 women on this board have had AC followed by Taxol/Herceptin and half had 4 AC followed by Herceptin. Both regimes used Herceptin for a year. Another chemo option that many Stage 1 women (and higher stages) get is Taxol (or Taxotere), Carboplatin and Herceptin (6 rounds) then continuing herceptin for a year.
Whether or not you should receive Taxol is an opinion but studies on Stage 2 women (those with 1-4 nodes positive) has shown a marked decrease in recurrence if Taxol is used when trialed as 6 AC or 4 AC followed by 4 taxol (prior to dense dose and prior to using Herceptin). So, using a taxane is a survivability boost.
Certainly you should at least use Herceptin for a year as most Stage 1 protocol is 4 AC followed by a year of Herceptin.
I hope this helps
__________________
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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05-07-2007, 01:48 PM
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#6
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Member
Join Date: Apr 2007
Location: Southern California
Posts: 17
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herception and care questions
Sheryl;
My case sounds similiar. I am 53 years old. Lumpectomy 3/29/07 - mammosite radiation for 5 days twice a day. DCIS with microinvasion - clear margins - sentinel node biopsy negative. Tumor was 5mm. ER+, PR+, Stage 1, Grade 2, Her2 Positive 3+.
Thought I was done after radiation. Saw the medical oncologist and he wants me to take an AI and Herception. I guess it is all good - being preventive. He said I would have the heart testing a few times at the start of Herceptin treatment (once every 3 weeks for 1 year) then less often if I do well on it. I am afraid of the Herceptin side effects more than anything. My oncologist feels that Tamoxifen is more appropriate for premenopausal women - he wants me on an AI - like Femara. My hot flashes are back with a venegence after stopping my HRT - my sleep is interupted and mood swings are common with me. I am meeting with the oncologist next week - after the test for high risk or low risk is completed. If he recommends the Herceptin I will give it a go. He also recommends bone density testing and a drug like Fossamex or Boniva and maybe an antidepressant to help with the side effects of the AI. Hope this helps........will post when I know what my treatment will be.
Good luck and God bless.
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