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Recently Diagnosed TNBC

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gansai View Drop Down
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    Posted: Jan 20 2014 at 4:30pm
Hi Everyone,

I was recently diagnosed with TNBC and was looking for some support. I also had some questions and was hoping you guys can help me. I am 36 years with a 2 & 5 year old. I would really like to do everything i possibly can to fight this and be there for my family. I had a mastectomy last week and will be starting my treatment soon (chemo & radiation).  On the day of my surgery, they thought my nodes were clear but on further tests and on my path report, they found a micromet on one of the nodes (total 7 nodes removed - rest were clear). I asked my surgeon if we could remove more nodes but he didn't recommend we did that). It still worries me, I am getting a second opinion tomorrow on that but was just wondering if anyone else came across the same problem or something similar. My other question was on the chemo regimen. They have recommended 4XAC and 4XTaxol followed by radiation. Do you know if there is any other drug that has been shown effective for adjuvant chemo for TNBC? Thanks. Appreciate you reading my post. 

Diagnosed Stage IIB, 3.5 cm, 1 Micromet/7Nodes, No LVI. TNBC.
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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: Jan 20 2014 at 5:35pm
Hi Gainsai,

I'm sorry you have a reason to join this club no one wants to join.  You'll find everyone here supportive and helpful.  Some are just beginning their journey, like you, and others have finished treatment or long term survivors.  Are you being treated at MD Anderson?  If not, they would be a good place for a second opinion.  The chemo you will be getting is common for breast cancer.  There have been some studies, in the neoadjuvant setting, that are showing adding Carboplatin to the chemo regimen improves pathological complete response (pCR).  http://forum.tnbcfoundation.org/adding-carboplatin-increases-pcr_topic11688.html

Here are a few other links you may want to check out:



Have you had your Vitamin D level checked?  Most of us diagnosed are deficient in Vitamin D.


Donna


Edited by 123Donna - Jan 20 2014 at 5:36pm
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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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: Jan 20 2014 at 5:42pm
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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gansai View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gansai Quote  Post ReplyReply Direct Link To This Post Posted: Jan 20 2014 at 5:45pm
Hi Donna...Thanks so much for taking the time to send me all these links. I really do appreciate it. Yes, my second opinion is with MD Anderson tomorrow. We are leaning towards having my treatment done there. Yes, they did check my Vitamin D level on diagnosis and it was very low. I am on prescription supplements now. Thank you again Donna. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Jan 20 2014 at 6:16pm
Gansai - I had Stage I TNBC and received the AC/T regimen you have been recommended. My sister at a different cancer received the same. I don't know how much that helps, but just thought I'd share. I've seen some posts recently about a research study that concluded it might be slightly more effective to do the Taxol before the AC. My guess is the folks at MD are on top of that, but if they don't mention it, maybe ask them about it. Everyone's different, but chemo was way more manageable for me than I expected. Take care.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gansai Quote  Post ReplyReply Direct Link To This Post Posted: Jan 20 2014 at 6:52pm
Hi Katdoll...Thanks for all the information. 
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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: Jan 20 2014 at 7:13pm
Gainsai,

MD Anderson is the top cancer center in the country.  Glad you are going there for a second opinion.   Wishing you the best and hope you get all your answers.   A/C, then T or T followed by A/C are the most often prescribed chemotherapies for bc.  Please let us know what you decide. 

Most prescriptions are D2, which is not the same as Vitamin D3 that you can get over the counter.  Our bodies absorb D3 better.  I've known some women who were on the prescription D2 and could never get there levels up.  

  • Vitamin D3 is more effective at raising and maintaining the vitamin D blood test (again, D2 binds less tightly to the vitamin D receptors in the body; therefore, D2 does not circulate as long in the body, which means it has a shorter half-life).

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 weekender09 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2014 at 7:50am
Sadly welcoming you to this support group.  But will say that these forums saved my sanity last year when I was diagnosed and started treatment.  

We are all here for you.  

I would worry less about getting more nodes removed etc.   Many of us had the protocol of chemo first then surgery so the cancer is destroyed first.  I had positive nodes prior to chemo but after chemo at surgery path showed no cancer cells survived.  The chemo is our wonder drug unfortunately.  

Good Luck and again we are all here for whatever  questions you have.

Barb
02/12/13 DX TNBC, Grade III, Stage 3, 3.3cm tumor, IMN and 1 lymph Positive, Chemo A/C T complete 6/13
BRCA1-/BRCA2+ Variance, BIL 7/13, 33 RADS complete 10/13 Remssion :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rosered71169 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2014 at 9:22am
gansai-
I had neoadjuvent chemo (before surgery) and it included Taxol, Cytoxin and Adriamycin. I am not sure if they give Adria after surgery. I agree with Barb that having the chemo allowed me to see the phenomenal results of the drugs. I was stage 2a with lymph nodes also showing cancer cells. I had an original biopsy for the tumor and then a node biopsy because of concern by my surgeon after ultrasound to the nodes on the affected side.  I had an MRI halfway through my chemo treatments and the doctors could detect no tumor or affected nodes at that time! I personally have never heard of anyone having additional nodes removed - we have SO MANY in our bodies it is impossible to test them all. My understanding is that doctors test those closest to the tumor to form the plan for treatment based upon how aggressive the cancer is. I got a few "second opinions" on my surgery and treatment until I felt comfortable with my team. You are right to do the same!  I wish you the best possible outcome with your treatment!
IDC 2-21-2012 @ age 42 TNBC, Stage IIA, Gr 3, 1.5cm Tumor Rt Breast, 3 Lymph Nodes, Neoadj Chemo, TACx6,BRCA Neg, Bilateral Mastectomy 7-30-12, 28 Rads, Bilateral DIEP 5-22-13...3 Beautiful Daughters
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gansai Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2014 at 8:22pm
Thanks so much everyone for all the information and support. I really appreciate it. I got a second opinion with MD Anderson today in regards to the treatment...and have decided to go there for the treatment. They are suggesting 12 cycles of Taxol weekly with Carboplatin every three weeks and then 4 cycles of FAC every three weeks. Praying it will work for me!! Thanks again for taking the time to write me back. 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2014 at 8:28pm
Gansai,

Looks like you made a good decision!  Second opinions are great and helps us live with no regrets.

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 Duchess13 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2014 at 9:10pm
I also think you made a good decision.  Carboplatin or Cysplatin are both good choices.  When I asked my
oncologist about the use of Cysplatin in my treatment, he responded with "Survival."
 
Good luck with your treatment and positive thoughts going your way.
 
Christina
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clarkjennifer Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2014 at 12:19am
Your decision seems to be quite right. I think second option is much better to be chosen. Be strong and go through the treatment. You will surely win the battle over this. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2014 at 9:34am
Dear Gansai,
 
7 years ago I had a mastectomy and 3 nodes removed.  After extensive testing micromets was found in 1 node.   A week later I had 9 more nodes removed and all were clear.  I really feel that you are fine with only the removal of 7 nodes.
I also had A/C x 4 and Taxol x 4.  As I say, that was seven years ago.
 
Sweetie, I have been reading a lot about treatment with Carboplatin added to taxol and it sounds really good.  I am not as familiar with the FAC, but it really sounds as though you have an excellent treatment regime set up at MD Anderson.   THEY ARE SHOOTING THE BIG GUNS, and that is good.
 
I was also stage IIb, grade 3, with 1 micromet.  As I said that was 7 years ago.  My prayers are with you.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gansai Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2014 at 11:03am
Thanks everyone...your support and prayers really mean alot.

Is it true that with TNBC, the longer you go without a re-occurrence, the safer you are?

Lot's of love to all of you.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2014 at 4:54pm
Hi, Gansai,
That's what my oncologist says and I choose to believe it!  Wish you the best as you begin your treatment.  This too shall pass.
 
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2014 at 8:30pm
Hello Gansai,
 
I agree with Charlene.  My oncologist and literature that I read tell me it is so and I also choose to believe it.  Good luck with your treatments.
 
God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susanb Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2014 at 10:10am
I just found this study. It only deals with much larger tumors but it does point to the direction that MD Anderson is moving to in treatment protocols.

http://www.breastcancer.org/research-news/20140122
Dx June 06 stage 1 at age 46, no nodes, clean margins, Ki-67 at 54, Bilateral Mastectomy, 4 rounds AC, complete hysterectomy Aug O7. Mother and Grandmother both died of breast cancer dx in their 30's.
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