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NINASUZIE
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Topic: STAGE IV CHEMO IN STAGE I-III Posted: May 12 2009 at 1:18pm |
Hi to All,
After my recent mastectomy surgery, I am researching chemo options like crazy. I have read many articles and posts with some Stage IV chemo drugs that have been used in earlier stages, such as Avastin, Abraxane, Xeloda, etc. Not often, but even trials are testing this idea!
I would be most interested and appreciative of experience or information for this option...remember, it was the use of Herceptin in Stage IV used in earlier stages that brought this successfully into BC treatment!
Thinking outside the box....I am sure there are many kindred spirits out there!
Hugs and Healing to you today,
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Suzie
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Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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Suzanne
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Posted: May 12 2009 at 2:42pm |
Ninasuzie, there are trials out there attempting to find which chemo drugs are right for which patients. Remember, though, that one has to balance possible gains with side effects. I'm sure you would not want to take a bunch of chemo drugs that could cause significant harm for possibly no help with your particular TNBC. That's why we don't get Herceptin, since it is for women who are HER2 positive and would not benefit us. That's also why so many of us are given the tried-and-true "C" plus Taxol or Taxotere. You can sign up for drug trials, but there's no guarantee of benefit. There is no guarantee with the standard treatment either, but at least there are many extensive studies showing that these drugs are helpful.
Although I was just stage 1, Dr. Hope Rugo at UCSF said I could take Avastin during the trial there. She didn't think my situation required it, however, plus I would have had to make many rather long trips into San Francisco for treatment
Suzanne
Edited by Suzanne - May 12 2009 at 2:47pm
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1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07
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NINASUZIE
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Posted: May 13 2009 at 6:16am |
Suzanne,
Thanks for the feedback from your experience. Your being Stage I and having A and T (with C as well?) is the "tried and true". Mine being Metaplastic (very rare, cells are different kind than glandular and TN) is why I am looking for options others have taken with those usual chemos.
Did you take C with T only? If so, how often/how long? How long are you past finished tx/dx?
For the record, I'm glad you like your doc and I love SF!!!! Hugs,
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Suzie
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Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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Suzanne
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Posted: May 13 2009 at 3:17pm |
Suzie, I had the typical "A" (Adriamycin) and "C" (Cyclosphamide/Cytoxan) together every other week for four treatments, then Taxol every other week for four treatments, a schedule otherwise known as "dose dense". Research had shown that dose dense is more effective than treatment every three weeks, which used to be standard. I think some oncologists are starting to skip the "A" due to possible heart problems years later.
I'm now over two years post-diagnosis so maybe the treatment worked.
Even though you have an unusual form of cancer, please be careful about "throwing the kitchen sink" at it. Please find what is thought to be effective and not think that every possible drug should be given. Side effects can be huge problems.
Suzanne
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1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07
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Sunris
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Posted: May 13 2009 at 3:40pm |
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Hope you can find this informative...
www.healthcentral.com/breast-cancer/c/78/10885/faqs-caf-fac/
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Nancy
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Posted: May 13 2009 at 3:43pm |
Sunris,
The link made hot for you.
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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amylynn
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Posted: May 14 2009 at 10:17am |
I am currently in a clinical trial for this. I am currently doing Avastin, Taxatore, and Xeloda. This is for four treatments. I will then do Avastin, Adriamycin, and Cytoxan for four treatments (they will stop the Avastin on the 2nd treatment) and then I will go for my bilateral masectomy. After surgery, I will have 10 more rounds of Avastin. Of course, with the clinical trial you may just end of getting the standard treatments. I had a very large tumor it was 7cm x 4cm (looked like a mushroom) and after 2 treatments its no longer measurable, so I am very pleased with the results.
Amy
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36 at dx IDC 2/09, 8cmx3cm grade 3,BRCA1, Cl Trial-4- Taxotere,4-AC,6-Avastin,4 cycl Xeloda
9/09-rght mast.w/tissue exp
PCR
Avastin x10,28 rads,done 7/10
left mast/w bi-lat DIEP & OOPH
Mets 6/2012
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NINASUZIE
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Posted: May 14 2009 at 11:15am |
Suzanne,
I agree totally with not just any drug or the kitchen sink theory...side effects are incredibly concerning. But, what if they are all for nothing? Yes, I need my onc to say that if chemo is preferred, why and exactly what in metaplastic. Otherwise, simply having stage IIA IDC as the onc says, is no reason to throw any version of T/A/C, dose dense or otherwise for adjuvant treatment. We wait and see what happens whereas neoadjvant can often show effectiveness during treatment per the tumor behavior.
Thanks for hearing me and I wish you NED for years to come! Hugs,
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Suzie
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Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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NINASUZIE
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Posted: May 14 2009 at 11:20am |
Amy,
Speaking only as a layperson, it seems they got very serious in matching your needs with a major league clinical trial using the "big guns" often reserved for Stage IV. I hope you are continually successful in shrinking that "mushroom"! I wish you healing and the best support, including us dear girl around you....I am still researching for adjuvant options that do similliar treatments to your trial. Hugs and healing to you 
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Suzie
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Dx: 1/09 Metaplastic TN IDC/3.5CM/DCIS/1.0;4/09 L mastectomy;6-11/09 Cytoxan/Taxotere X6;BRACA-; Recurrance 11/10 bone mets broke arm;Lung mets;rads X15; chemo/parp tbd 1/11
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elizabeth
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Posted: May 16 2009 at 4:36pm |
Hi Suzie,
I was in a trial with AC as well as Abraxane and Avastin for early stage breast cancer. The endpoint of the Phase I study was cardiac safety. So far, my heart scans have all been fine, but it is a little scary to wonder what long term effect all these drugs might have on me.
Side effects were temporary and tolerable, but I think that varies a lot from person to person.
Also, using cutting edge chemo under a trial, you don't really know if you're getting a better or worse outcome than you would have under standard regimins. Recently, some articles came out suggesting that Avastin might temporarily slow down tumor growth but then accelerate it later, so that makes me wonder if I did the right thing by going on the trial.
You are wise to explore all your options. If you haven't sought a second opinion yet at one of the major cancer centers, you might want to consider it, especially if you can find an oncologist specializing in metaplastic TNBC.
Best wishes to you,
Elizabeth
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lumpectomy 4/07; 1.8cm TNBC stage 1c grade 3; chemo: AC, Abraxane, Avastin; rads 9/07; bilat mastectomies 9/08; oophorectomy 1/09.
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