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Adamh View Drop Down
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Joined: Jul 19 2013
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    Posted: Jul 19 2013 at 10:21am
Hi everyone, 

My partner was just diagnosed with TNBC this week and I feel lucky to have found this site. We're at the very beginning of all this, but I feel I've already learned a great deal from reading through the forum. Just wanted to introduce myself; I'm going to lurk and read for a while. I'm sure this will be an important resource once the time comes. 

Thanks,

Adam Horowitz,
Atlanta, GA
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kirby View Drop Down
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Joined: Oct 09 2007
Location: bay area,california
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Points: 1088 		Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2013 at 12:35pm
Welcome Adam. Sorry you have to be here but I am sure you will find it extremely useful. And your partner if they choose to come on.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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123Donna View Drop Down
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Joined: Aug 24 2009
Location: St. Louis, MO
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Points: 13510 		Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 19 2013 at 12:52pm
Hi Adam,

Glad you found us and that you are helping your partner through the scariest part of this journey.  Please tell us more when you find out.  There are lots of good information on this forum.  Search through the threads and read some of the posts.

Please check out these links:





Has your partner had a Vitamin D test lately?  Most of us diagnosed with TNBC are deficient in Vitamin D.



Is she being seen by a medical team that is very knowledgeable with Triple Negative Breast Cancer?  This decision is very important and also getting a second opinion before beginning treatment.  Here's a link to the NCCN guidelines and also member facilities.


I hope I haven't overwhelmed you with information.  I truly believe this part of the journey is the scariest and overwhelming.  Making the right treatment decisions can be overwhelming when you are filled with anxiety and fear.  If I had any advice that I wish I would have pursued when diagnosed would be to get a second opinion or seek out the advice from a knowledgeable TNBC doctor at an NCCN facility.  

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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Maria L View Drop Down
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Hi Adam,
 
I was recently diagnosed with TNBC in late June and wanted to share that there is a TNBC clinical trial at Emory (Winship Cancer Institute) here in Atlanta.  I just officially started in the trial last week.  My husband and I did a tremendous amount of research in just a couple of weeks to get the process started asap.  Your partner is going through many emotions right now and will need you now more than ever.
 
~Maria
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SagePatientAdvocates View Drop Down
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Points: 4748 		Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 20 2013 at 12:22am
Dear Adam,

welcome and sorry you had need to find us. 

Dear Maria L,

welcome, as well

what is the name of the trial please and NCT#?

Adam has your partner, and Maria have you, seen a Certified Genetic Counselor and tested for the BRCA mutation.?

warmly,

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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Adamh View Drop Down
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Points: 4 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Adamh Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2013 at 11:27am
Thanks so much everyone, this is all very helpful. 

Yes, Kavita (my partner) has been tested for BRCA1, we're waiting on the results. Her mom has the gene mutation, so we're expecting she does too. 

She's receiving treatment at Winship and we have our first meeting with the oncologist this week. So far the cancer has been been staged at stage 2, but they're not sure if it's spread to the lymph nodes yet. Good to know about the clinical trial, we'll be sure to check it out. 

Thanks again,

Adam
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Adamh View Drop Down
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Points: 4 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Adamh Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2013 at 11:32am
Thanks Maria. I see the clinical trials are listed here - https://winshipcancer.emory.edu/clinical-trials/WinshipContentPage.aspx?nd=772&category=Type%20of%20Cancer&value=Breast%20-%20Female/. There seem to be 3 dealing with TNBC.

Adam
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Maria L View Drop Down
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Points: 2 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Maria L Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2013 at 6:28pm
Steve,

Name of trial is Phase II Neoadjuvant Trial of Sorafenib in combination with Cisplatin followed by dose dense Paclitaxel for Triple Negative Early Stage Breast Cancer.   Study No: IRB00019781

Yes, have an appointment for genetic testing to see if I have the gene.... Not in my family history.
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