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Old 11-20-2006, 06:06 AM   #1
Joe
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Questions on chemo and herceptin

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Hi

I am very new to the whole chat room scene. Although I have been reading for the past week. I am looking for information on whether to do chemo and Herceptin or just herceptin alone.
I was diagnoised with early stage bc through mammogram, no lump was detected. Had a lumpectomy Nov. 1st. They found foucal microinvasion, took 2 node neg. ER,Pr neg but her2 3+, I will start radiation the first week in Dec. and go for 7 weeks.
Found out Thursday, the day the FDA approved herceptin for early stage bc that the onc wanted to do 4 session of chemo and 1 year of herceptin. I am looking to do only heceptin. Also the onc is having the genetic testing done on the her2 gene to see how agressive it is. Has any ones onc suggested this test and what have they found out?
Thanks This has been a great site.
DianneM
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Old 11-20-2006, 08:40 AM   #2
suzan w
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perhaps she is referring to Oncotype DX test? If so, I had it done after surgery...and the results surprised my oncologist. She was not going to recommend chemo and wasn't sure about herceptin. But the oncotype put me at a high-intermediate risk for distant recurrance within 10 years. I did chemo, then herceptin! DOn't know if this is any help!!
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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 11-20-2006, 10:36 AM   #3
MJo
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If she is referring to the Oncotype, it's possible that ALL Her2 tumors will test high risk. Johns Hopkins Ask an Expert describes the Oncotype DX as a test for node-neg stage 1 tumors that are NOT Her2+. I bet that no Her2+ tumor has ever tested other than high risk, though I don't have the data to prove it.
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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 11-20-2006, 12:53 PM   #4
panicked911
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ditto on what MoJo said. ALL HER2 comes back high even those who are triple positive. the HER2 factor weighs two heavily for it not to come back. the test is also very expesive $3,000 and not all insurance is paying for it. Oxford does not and I am currently in a level 3 appeal to get it covered.



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Old 11-20-2006, 01:35 PM   #5
SusanV
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Dianne,

So sorry that you have joined the crowd here, but it is an awsome place for support, information and expertise. Just wanted to give you my treatment history if it helps. My dx is similar, but not exactly the same as yours. I am also node negative, with two small tumors, but I am ER/PR +. I think the decision to add chemo to herceptin is very personal, but one you should not take lightly. Do as much research as you can, and ask your onc to provide you with some numbers for your exact % of recurrance, which will be based on your specific information to include your age, health history, tumor size, ER/PR status etc. I did decide to add the chemo, and will begin herceptin on 11/27. I am glad that I did it, and most importantly I feel that it will give me a little piece of mind that I am fighting back with what is available. Her2 is aggressive and I wanted to treat it that way !

Good luck, I know the decision is not an easy one to make.

Thinking of you
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Susan V - Pittsburgh PA
DX Age 37 on August 3, 2006
Stage 1 Grade 3
ER/PR + (Highly Positive)
Her 2 +++
1.3 & 1.2 tumors right breast
node negative
lumpectomy 8-15-06
A/C Began 9-5-06 Finished A/C 11/6/06
Port Placement 9-15-06
Negative Test for BRAC1 & BRAC2 10-25-06
Began Tamoxofin November 21, 2006
First Herceptin November 27, 2006 Continues every 3 Weeks
First Radiation Treatment December 11, 2006
35 Rads Completed
Final Herceptin Treatment November 12, 2007
Port Removal November 19, 2007
Living Life to the Fullest !!
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Old 11-20-2006, 09:15 PM   #6
Bev
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Hi Dianne,

The protocol in the past has been for herceptin to be combined or used after chemo even for early stage. It has synergy with taxol. It's more complicated than I can understand, but your test results may suggest chemo is warranted. Standard operating procedure has been changing quickly though.

There are a couple of people on board doing Herceptin only. Herceptin works on 50% of Her2+. So...if you're not one of them, you've missed out on the benefits of chemo. If you are one of them, you've avoided side effects of chemo which ranges greatly. Problem is in the past we haven't known who benefits. They are working on this.

Before Herceptin, I think it would have been rare to do chemo for stage I. I think you should get a 2nd and 3rd opinion. Inquire with all 3 if there are any studies you can participate in. Let us know what the test results are, so the others can give you a more informed opinion.

Best of luck and smooth sailing. BB
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