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Old 07-17-2007, 07:30 AM   #1
Robbin
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Smile her2+

Hello,

I am new and wanted to say Hi for one and to ask a question. I am er,pr and her2+. I had a lumpectomy, 4 a/c and have had 2 taxol with 2 more taxol to go. I have 6 wks rads to go also. I had two treatments of herceptin before they figured out I was allergic to it. So that option is out now. I am scheduled to take tamoxifin for 5 yrs once all that is done. I feel like that is a pretty good treatment. I know everyone is different and must make up their own minds. With her2+, which I don't know enough about yet, is there other meds my oncologist didn't think to offer?

Robbin

Last edited by Robbin; 07-17-2007 at 07:32 AM.. Reason: didn't want icon at beginning
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Old 07-17-2007, 07:41 AM   #2
suzan w
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Hi Robbin, welcome! You have come to the right place to ask all your questions!!!! You did not mention how old you are, menopause status-can make a difference when deciding between tamoxifen or an Aromatose Inhibitor (like arimidex).
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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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Old 07-17-2007, 07:50 AM   #3
Robbin
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HI,

I am 49 years old. I was still having a period before this all started but now, I am not.

I am having a hard time with this posting thing. Hopefully I'll get better. I posted a little different message because I didn't want that darn happy face at the beginning but, wasn't sure how to get it off. I not very good with computers.
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Old 07-17-2007, 08:19 AM   #4
Hopeful
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Robbin,

I don't know what reaction you had to Herceptin, or how your doctor determined you were allergic to it. Herceptin can be prepared for infusion in one of two ways:

1) BWFI, USP, 1.1% benzyl alcohol preserved
2) For patients with known hypersensitivity to benzyl alcohol, Sterile Water for Injection

Perhaps you had an allergic reaction to the reconstitutive agent, and not the Herceptin itself? It may be worthwhile to ask your physician about it.

For information on Tamoxifen use in Her2+ patients, there is a good discussion in the current thread:http://her2support.org/vbulletin/sho...rid=1173<br />

Best of luck with your treatment plan,

Hopeful
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Old 07-17-2007, 10:17 AM   #5
Robbin
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Hopeful,

Thx for your reply. I was kinda puzzled too. He first said it was the Taxol but then when I had my second treatment of Herceptin, without the Taxol, he said the reaction time had to make it the Herceptin. Now that I've had my second Taxol, and no rash, I guess it had to be the Herceptin. Although, I was not looking forward to the yr of Herceptin, It was that little extra chance and now I don't get that.

I will mention what you recommended tho. Thx

Robbin
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Old 07-17-2007, 10:41 AM   #6
Hopeful
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One more thing

Robbin,

I should have asked you first time around, but are you getting pre-meds for the Herceptin (i.e., Benadryl)?

Hopeful
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Old 07-18-2007, 08:32 PM   #7
hutchibk
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I agree with Hopeful - make sure you are getting Benadryl when you get an infusion. I had a slight allergic reaction to my first Herceptin, too. They gave me Benadryl each time after that and no problems from that point forward, for 18 months of Herceptin.
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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 07-19-2007, 01:41 PM   #8
MJo
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I hope you will talk to your onc about what some of the women suggested -- different infusion, stronger premeds. I have asthma and allergies and I understand the concern about allergic reactions. But I think each Herceptin we take benefits us. You've had the benefit of one infusion. Maybe you can get in a few more. You can always try a second opinion.
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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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Old 07-19-2007, 03:45 PM   #9
Vanessa
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I also began to develop an allergic reaction to Herceptin, so my doctor added decadron to my weekly herceptin treatments.
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Old 07-19-2007, 08:40 PM   #10
Bev
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Just want to add that if you went to weekly lower dose of T & H and premeds, you may be able to handle it. Bev
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