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I'm a new member

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13276
Printed Date: Dec 12 2019 at 10:06pm
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Topic: I'm a new member
Posted By: tacoates
Subject: I'm a new member
Date Posted: Jan 26 2018 at 1:08pm
Hi Everyone,
 
My name is Tracey and i'm a new member as of a few minutes ago.  I am 46 and was diagnosed with Stage 1 triple negative breast cancer.  I was devastated as we had just buried my best friend who passed of triple negative cancer.  I often get told her story is not mine as she was state 3 when we were 29 then it came back at 40.  Regardless, it sticks with me every day. 
 
I started chemo (ACT), 8 cycles on November 2nd.  things were going well until yesterday.  I mentioned that I thought the tumor had grown and I felt something under my arm.  I had an ultrasound and I was right.  now the tumor is larger and 2 lymph nodes are enlarged.  to say i'm crushed is an understatement and I haven't stopped crying.  i'm a fighter but just so sad.  I am meeting surgeon today and it sounds like they will push up surgery but then chemo again after.  i'm so scared thinking it can be elsewhere and what other chemo is even out there.  anyone experience something similar?
 
PS - Ann, you mentioned Tiffany Trainer.  I have heard her name many times and I am going to Sloan.  I am going to request she look at my case today during my appointment.  I am surprised they haven't consulted her yet but will push because as you mentioned...we are our own advocates.
 
Sorry to be such a downer ladies.  I am happy to find such a supportive group of women. it's always reassuring :)
 
lots of love my TNBC sisters!



Replies:
Posted By: 123Donna
Date Posted: Jan 26 2018 at 1:36pm
Hi Tracey and welcome.  You are right, you find the right group that are here to support you during this journey no one wants to go through.  I'd highly recommend Dr. Traina and get a consult from her.  Yes, there are many other chemo choices.  At least you know this one didn't work so you can move on to other options.  Did you get ACT together or AC, then T?  Sometimes they can test the tumor for chemo sensitivity and offer choices of chemo regimes that might work best.  You could ask about this type of testing.

Here's a link to chemo options for breast cancer.  I had TC the first time.  When I recurred, my onc tried a different combo (Carboplatin and Gemzar) that got me to NED (no evidence of disease).  The trick is finding out which one will work for you.  Don't panic - there are many other options!  Have you been tested for the BRCA gene?  There have been studies about adding Carboplatin or Cisplatin.

http://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#54" rel="nofollow - http://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#54

http://forum.tnbcfoundation.org/adding-carboplatin-increases-pcr_topic11688.html" rel="nofollow - http://forum.tnbcfoundation.org/adding-carboplatin-increases-pcr_topic11688.html

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



Posted By: tacoates
Date Posted: Jan 26 2018 at 1:46pm
Nice to meet you Donna. I had 4 AC and 2 taxol. I️ was supposed to have the third one yesterday but didnít bc of the recent findings. Iím glad to know there are other alternatives. I had asked my onc before this even started about carboplatin and she felt that wasnít necessary given i was stage 1. Iím kicking myself now for not pushing harder. Iím just praying it hasnít spread.

I will definitely get that consultation with dr trainer. I did get tested for braca and that came back negative. I also recently had an ultrasound on liver and kidney and both of those were good so trying to be hopeful. I have a petscan today which scares me too. A lot going on ..


Posted By: Asovey
Date Posted: Jan 26 2018 at 7:35pm
Yes, Dr Traina is a must! Your insurance should pay for a second opinion. The Breast cancer center at Slone is amazing in itself. Let me know if I can help in any way!

Ann



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