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Donna Zukowski View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Zukowski Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2009 at 9:35am
Connie

The study I may possibly be a part of looks at zometa or clondronate (1600 mg per day) or ibandronate (50 mg per day). It is randomized which drug you get. I don't know if there is something else (other studies) other than biophosphonates for us TNBCs post treatment? Your onc was really on the ball; must have been watching the research.

Yes I am a believer and thx so much for your prayers.
Donna Z
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2009 at 10:23am
I am blessed and honored to have been taken on as a patient of Dr. Rebecca Dent from Sunnybrook (our Canadian equivalent to Dr. Lisa Carey).  The woman is the complete package, highly intelligent, model good looks, delightful sense of humor, kind and compassionate. 
 
She is just amazing and I am so fortunate. I travel far and I wait many hours - and she is worth every mile and every minute to be able to actually discuss triple negative breast cancer.  I finally feel safe. 
 
Denise (our dmwolf from the forum) is on the same trial that you may be entering - she is also taking the clodronate.
 
Donna, since you are right there - M.D. Anderson has studied turmeric before for breast cancer and I heard they may be doing some trials - please ask if there is currently anything in the works?
 
Love,
Connie
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Donna Zukowski View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Donna Zukowski Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2009 at 12:00pm
I totally understand what you mean by "feeling safe". I will be transfering my care back to Canada after surgery. They are running the biophosphonate study in Canada as well. I will ask about the tumeric when I am down there for surgery. I am finding even this month off chemo while I wait for surgery I have worries about this TNBC growing. I know it will be what it will be but there is that vulnerability. Which will be there for a long time.

Does it lessen with time? 
Donna Z
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JuneLee Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2009 at 5:17pm
123Donna,  Thanks for asking for other stage I experiences.  I've read
the 3 pages posted so far and I think I'm the only one in which my
oncologist it was not necessary for me to have chemo or radiation even
though he knew I was TNBC.  I had DCIS with two invasive components--
.2 and .7 cm.; had bilateral with no reconstruction.  I do see the oncologist
regularly and had a PET at 3 years.  I am now a little over 4 years with
NED.  The more I read about TNBC, the more I think maybe I should have
had follow-up treatment.  But, so far, so good.  I am considered in good
health.    JuneLee in NE FL
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 6:29am
Steve:

I just wanted to let you know that I had the BRCA test done yesterday prior to my chemo.  They're going to send it off to MYRIAD, but they warned me that my insurance company may not want to pay for it since I don't have any other family members with BC.  I have one cousin only, but not with my mother, aunt, grandmas, etc.  I guess it really depends on my insurance company and their policy to pay for this testing.  I should know in a week or so if its covered.  I'd like to know the results, but doubt that we could afford the entire cost out of pocket if the insurance company won't pay.

Donna

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 8:40pm
Hi Donna,

I understand about the insurance companies reluctance to pay...

have you checked your dad's family history?..often the mutation can be 'hidden' there..

You might have your oncologist write a letter referencing the following study by Dr. Steve Narod's group that recommends BRCA testing for any early-onset (<50 years old) woman with TNBC, even absent a family history.

BMC Cancer. 2009 Mar 19;9:86. Links
The prevalence of BRCA1 mutations among young women with triple-negative breast cancer.

Young SR, Pilarski RT, Donenberg T, Shapiro C, Hammond LS, Miller J, Brooks KA, Cohen S, Tenenholz B, Desai D, Zandvakili I, Royer R, Li S, Narod SA.
Women's College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com
BACKGROUND: Molecular screening for BRCA1 and BRCA2 mutations is now an established component of risk evaluation and management of familial breast cancer. Features of hereditary breast cancer include an early age-of-onset and over-representation of the 'triple-negative' phenotype (negative for estrogen-receptor, progesterone-receptor and HER2). The decision to offer genetic testing to a breast cancer patient is usually based on her family history, but in the absence of a family history of cancer, some women may qualify for testing based on the age-of-onset and/or the pathologic features of the breast cancer. METHODS: We studied 54 women who were diagnosed with high-grade, triple-negative invasive breast cancer at or before age 40. These women were selected for study because they had little or no family history of breast or ovarian cancer and they did not qualify for genetic testing using conventional family history criteria. BRCA1 screening was performed using a combination of fluorescent multiplexed-PCR analysis, BRCA1 exon-13 6 kb duplication screening, the protein truncation test (PTT) and fluorescent multiplexed denaturing gradient gel electrophoresis (DGGE). All coding exons of BRCA1 were screened. The two large exons of BRCA2 were also screened using PTT. All mutations were confirmed with direct sequencing. RESULTS: Five deleterious BRCA1 mutations and one deleterious BRCA2 mutation were identified in the 54 patients with early-onset, triple-negative breast cancer (11%). CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer.

.........

good luck to you and if you test I am sending prayers for a negative result to you...


all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 05 2009 at 5:28am
Steve:

Thanks, I'll share the letter with my onc if they refuse to cover the test.  While there isn't any family history on my mom's side (she's 79), my aunt is 84 and my grandmother is 101.  I do have a cousin on that side that had some type of early cancer when she was in her early 40's.  All she told me was she had 9 radiation treatments and that was it.  I should ask her what type of cancer she had.  I'm also an only child.

On my father's side, there isn't much history.  My father had 2 brother's, but I'm the only grandchild.  My grandmother on that side lived to 82, but my grandfather died when my dad was only 8 years old.  I have no history from that line of the family.  That may help with getting the test approved.  I'll probably hear form Myriad later this week if they have questions about the insurance company paying for the test.

Thanks for your help.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote unklezwifeonty Quote  Post ReplyReply Direct Link To This Post Posted: Sep 05 2009 at 10:26am
Originally posted by Autumn10182001 Autumn10182001 wrote:

I apologize.. but what are the drugs represented here    FAC / FEC x 4....  Please


Autumn,

I did not see any replies to your question and not sure if you figured this out yourself. AC is the same as the AC in the ACT, i.e. Adriamycin and Cytoxan. E is Epirubicin, another Anthracycline like Adriamycin.

F is 5FU or Fluorouracil.

Love,



Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).
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