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Old 08-23-2005, 09:04 AM   #1
athena453
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Hello All,
I was dx in May 05 at age 27.
Stage IIIc at dx, with 30/34+ nodes, her2+ (FISH 5.16), ER/PR-, grade 3.
I had a Mast on the affected side shortly after dx. All scans came back clear. I started dose dense AC and will have #4 this week. My onc's original plan is to do 4 dose dense taxol next, with herceptin for a year.
It seems that while this protocol was once considered aggressive, it has become the standard. I am interested in hearing from other women who were dx at stage III regarding which chemo regimen was used. So far, I have looked into Gemzar, carboplatin, 5-FU, and taxotere vs. taxol. Any thoughts would be greatly appreciated!
AM
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Old 08-23-2005, 09:48 AM   #2
jojo
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Hello Athena,

A lot of onc's, despite their aggressive approach to cancer treatment, would not throw all of the chemo's at once at the beginning of the game, only because they would want to 'save' for later on, in case of need.

Unfortunately, our bodies are made to play it smart, when it comes to becoming drug-resistent. Sometimes, chemo's DO work on usin the 2nd round, or 3th, or even 4th, especially with good lengthy time breaks in between.

Like you, I was diagnosed stage 3c at age 35, but I was neo-adjuvant. ER+ 40%, PR+ 20%, Her2 3+. So, I had 4x dose-dense A/C, then 12x weekly Taxol, in conjunction with weekly Herceptin for its 1st year. I recurred to a brain met (and then supraclavicular nodes) the following year, so I have come to be remaining on Herceptin indefinitely. Then I had a mastectomy surgery, which revealed my primary tumor (6cm) was completely gone, however 17/18 nodes positive (I think the smallest -- just one node -- at 1.5cm, the rest microscopic mets).

Currently, I was spotted with a suspicious nodule & some pleural effusion on the opposite sides of my lungs, so we are going through a battery of tests before deciding on my treatment plan. Right now, I am just on Herceptin, Aromasin & Zoladex.

If you still wanted to add another chemo agent to your original regime, you may want to check into some clinical trials. I believe that there are some ladies on the boards -- for their breast cancer -- that have had Taxol (or Taxotere), A/C, and Carbo.

Sorry that you had to join our club, but you just found the right place! Feel free to ask any questions or make comments here.

Good luck! :-)

PS: I think that your FISH score indicates that your Her2+ falls into the 'medium' range. The higher you go, the more Her2 you have. I believe a 3 (or 4?) is the highest we could go.
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Old 08-23-2005, 08:54 PM   #3
athena453
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jojo,
I just recently obtained a copy of my FISH pathology. Until recently, I only knew that I was Her2+ by the IHC method. I have been looking for any research on herceptin's effect corresponing to FISH scores. I have not yet been able to find any. I have read the posts on this site in the past, and I have read many of the responses on posts regarding the likelihood of a positive response to Herceptin.
AM
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Old 08-24-2005, 06:52 AM   #4
saleboat
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http://www.labcorp.com/clinicaltrials/what/HER2.pdf

I found this article on this web-site. It is from 2002, and I hope it is still up-to-date. It describes the different testing methods (IHC & FSH).

Jen
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Old 08-24-2005, 07:56 PM   #5
Lori
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AM,

I waw diagnosed in Feb '05 at 31 years old with stage 3a, ER/PR/Her2 +, 8/18 nodes positive, grade 3, and had a lumpectomy. I had 4 rounds of AC and now am working on Taxol and Herceptin weekly. I will have 12 weeks of Taxol and a year of Herceptin. My onc tells me that I am getting the best treatment for 2005.
I know how it feels to be constantly wondering if you are doing everything you can to beat this. It can make you crazy, but you are doing the right thing by exploring all of your options and discussing them with your onc. My onc. told me I have around an 85% chance of no recurrance in the next 5 years. I hope that helps you feel a little better.

God Bless!
Lori
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Old 08-25-2005, 08:34 PM   #6
pgill
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Am

I was also diagnosed in May 05 with stage IIIc, E/P - and Her2 +++. My onc and surgeon disagreed on treatment. Surgeon wanted to operate, onc wanted to do neoadjutant. I went with Onc. I received 4 cycles of FEC and have just begun 4 cycles of xeloda and taxotere. I am also receiving herceptin weekly. I am in a clinical trial which allows me to get Xeloda. I will have surgery around Thanksgiving and then about 40 rad treatments and continue Herceptin for 2 years. I was told this is a very aggressive approach. I sure hope so.

Given that you have taken a different route this may not be of much help but it does seem to be working for me. My tumor can no longer be felt and lymph nodes are not swollen.

There are so many approaches that I have found it a bit overwhelming...especially when the doctors disagree and you have to make the decisions. The good news is that whatever path we take there are many branches further down the path!

I am sorry you are facing this. I am 59 so at a different point in life. I am however pleased to find someone else diagnosed IIIC. It seems a bit too close to Stage IV for comfort...but we'll handle what is set before us with grace and dignity...interspersed with a lot of laughs.

Hope things go well,

Peggy
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Old 08-25-2005, 08:54 PM   #7
athena453
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Peggy,
Thank you for your reply. I think there is a huge benefit offered in that neoadjuvant shows you for sure whether a specific drug (or combination of drugs) offers you a more substantial benefit.

I was not given the option of neoadjuvant, and both the onc and surgeon were in agreement. I didn't question it.

I received my revised chemo plan today: taxotere, carboplatin, and herceptin. The herceptin will be for at least a year, pending on the HERA trial data. I am curious that your onc agreed to two years prior to the data. Then again, you were also being treated with a clinical trial regimen.

I asked about Xeloda as well; I have heard it is extremely beneficial for hormone receptor negative tumors. I may also pursue Fosamax.

Arielle
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Old 08-25-2005, 10:48 PM   #8
shaeff
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arielle

We had a 5 cm stage III Her 2 Hist grade III nottingham scale 8 HER 2 +3 PR and ER positive tumor removed in a masectomy surgery. We are now looking at 8 treatments of chemo (24 weeks in all) of TAC (Taxotere, adriamycin and cytoxan) with the possibility of Xeloda followed by Herceptin and Tomaxifin. I believe that our treatment is as aggressive as it gets but I may be wrong.

Good luck,

Shaeff
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Old 08-28-2005, 07:45 AM   #9
Claudia
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I was dx with stage IIIB IBC July of 04. My mass was 7 cm and was inoperatible. I recieved every two weeks 4 A/C tx's and then 4 Taxol treatment. December 1st I had a double masectomy and started radation the middle of Jan. I finished my protocol March on 05 and in April I began Herceptin tx as a preventive started out with single dose and now receiving triple dose every three weeks. I was told at that time by my oncologist that this was the most aggresive tx I could receive this was also backed up by Dana Farber. Do you also have IBC? Best to you Claudia
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Old 08-28-2005, 11:33 AM   #10
athena453
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Claudia,
I am fairly sure I do not have IBC. I did have Paget's disease of the nipple, but I don't think that is considered IBC. (Someone correct me if I am wrong!)

I just discussed my next chemo with my oncologist. Taxotere, Carboplatin, and Herceptin, of course. I will not be participating in a clinical trial, but my onc is willing to give me carbo off-label.
AM
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Old 08-29-2005, 02:21 PM   #11
Rupali
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Claudia, why was it consider inoperable for you.
I had a 9cm mass and I am just 29 too.
I was diagniosed with stage 3a 12/24 + lymph nodes...went thru mastectomy, chmeo : dose dense 4AC, 4Taxol and then 33 radiation.
Now on Herceptin for 1 year and after 3 months my LVEF has fallen down from 54 to 45%. Hemoglobin is also down to 9.8 and I am working on rebuilding the body....
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Old 08-30-2005, 08:58 PM   #12
mikece
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My wife now 35 was diagnosed in May 04 with a 6.5 cm ER/PR+ HER2 3+ IDC with 14/15 nodes positive and positive lumpectomy margins. She had 4 Rounds AC (Dose Dense) + 4 Rounds Taxotere (Dose Dense), then Mastectomy in Oct 04 plus radiation and started one year of Herceptin + 6 treatments Navalbine in January 05.

Prior to left mastectomy she had a breast MRI and BRAC genetic testing, both were negative.

In July she felt a lump in the right breast which turned out to be a 4CM tumor. This one is ER-/PR+ HER2 positive by FISH test. Sentinel node was microscopically positive.

She had a mastectomy and she is now going to start 6 rounds of Taxotere + Carbo + Herceptin.

The doctors are scratching their heads over why the Manual Exams, MRI, & CT's did not show the 2nd tumor earlier and how it could be there with all the Chemo.

She had a whole body PET scan prior to the 2nd mastectomy which only showed a hot spot in the breast. This is the only test that actually showed something.

Whole body PET scans are expensive, but I would push to have one.

Mike
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