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BanR View Drop Down
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    Posted: Oct 11 2013 at 2:34am
hi ladies!
diagnosed with stage 1, grade 3, triple negative bc ( out of the blue!! )last month. i am going to turn 35 in a few days.
size of lump after ultrasound/mri was 1.2 cm, nodes clear.
2 lines of treatment suggested:
1> chemo first, 4 dd fec, 4 taxol
     then surgery
    then  checking for pcr
2> since lump small and localised, get surgery done first
      then chemo, 4 dd fec, 4 taxol
      radiation

opted for the second one, since most doctors were suggesting that.( lump was 1.2 cm, margins clear, sentinal nodes and other lymph nodes clear)
can you shed some more light on these 2 different line of treatments and benefits of one over another. which one is more commonly followed and why.
thanks!
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BanR View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2013 at 2:52am
as a continuation to my previous post ( since being new to this, i dont know how to edit/delete posts here) ....
some doctors say, for triple negative, whatever stage be it, 4 dose dense fec followed by 4 three weekly taxol and then radiation is the standard norm worldwide. and some say, that it should be TAC, three weekly intervals, 6 times.
will appreciate if i could get some inputs on this too!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hopeful57 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2013 at 8:06am
Hi, I can just tell you what I had. Diagnosed on March 1. Lumpectomy and breast reduction on April 22. Tumor was 1.2 cm, BRAC negative, sentinel lymph node clear, margins clear. Then I had 4 DD AC and then 4 DD Taxol. Now I am getting 28 radiation treatments. Each of my chemo sessions (with the exception of the last one) was followed the day after by a Neulasta shot. Surgeon said that if I had been BRAX positive, they would have done mastectomy but since I was not and it was a small localized tumor, they recommended a lumpectomy. Good luck to you.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote NurseLeigh Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2013 at 9:44am
I was diagnosed 10/9/12 with TNBC and had 4 DD AC and 4 DD Taxol followed by bilat mastectomy and 32 rads ending on 7/19/13. From what I've learned from my journey is that triple negative bc is very aggressive and I don't understand why Dr's are still only doing lumpectomies. It's not like the hormone positive breast cancers, our is different. Why wouldn't you be aggressive with the treatment for an aggressive cancer? Disapprove
Dx: 10/9/12 @ age 44 IDC TNBC Grade 3, Stage 2. 4.4 cm tumor BRCA neg
11/2012 Dose Dense AC/Taxol pCR!!!
3/22/13 Bilat Mast w/tissue exp.
7/19/13 Completed Rads @ MDAnderson.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote wcnewyearbaby Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2013 at 10:20am
Hello,
 
After surgery and the final path report came out, my tumor ended being multi focal 2.5cm at about 1.2 and 1.3 a piece, growing side by side.  When I had my biopsy and ultrasound they told me it was 6mm, and they sucked out half during the biopsy.
 
The MRI I had prior to surgery showed the 2nd spot; however, since I decided on simple mastectomy they did not investigate it further.
 
I had 4 cycles of AC DD, and 12 weekly taxol as the standard on the national clinical trial.
 
DX age 41 on 11/14/12, multi focal medullary carcinoma features 2.5 cm, simple mastectomy right breast 1/21/13, Grade 2, 0/3 lymph node, 4 AC DD and 12 wkly taxol.Finished 6/26/13.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2013 at 3:51pm
Hi BanR,

The most common treatment that we see is dose dense Adriamycin and Cytoxin (every other week) followed by 12 weekly Taxol. The weekly Taxol supposedly makes the side effects easier to tolerate. Some places, ie MDA, opt to do Taxol first.

I think we are just starting to see a trend of moving away from Adriamycin in some places because of the heart issues, but it seems like it may be more individual doctors or regionally. I am not sure where you are located, but I think what I listed above is the standard in the US and mostly what we see from others around the world too. I know there have been a few women here who have had FEC but I think it has been more because another regimen wasn't working or they were avoiding Adriamycin because of pre-existing conditions.

Not sure if this helps or clouds the waters since it is different from what you have been told!
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2013 at 2:06am
hi everybody..
thanks for the reponse!!!
yes, it will be 4 DD AC followed by 4 DD taxol.
i clarified my query regarding AC and FEC. It seems FEC and AC are the same and cause same side effects. So you can take either-or.
And when the lump is small, its again either-or, when it comes to taking chemo first-then surgery/ lumpectomy first-then chemo. The former helps to predict your recurrence or not etc better, looking at how your tumor responded. But it also allows the tumor to grow, just in case it didnt respond well to the first and second chemo rounds.
Really looking forward to targeted therapies in the future. We end up killing all the healthy multiplying cells from head to toe, in the process of finishing off a few cancer cells... But cant help.
One last question.. for all the ladies who had adjuvant chemo, when did you start your chemo, as in how many weeks post surgery?


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Post Options Post Options   Thanks (1) Thanks(1)   Quote hopeful57 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2013 at 7:45am
Hi, BanR. I had a four week period from the time my lumpectomy was performed and the start of chemotherapy. My oncologist said the standard is to wait four weeks. And between chemo and the radiation I am doing now, it was another four week period. Good luck to you. Are you having a lumpectomy? If you have chemo, are they giving you the Neulasta shot for your blood count? And if they do give you the Neulasta shot, if you take a Claritin the day before, day of and day after, it should help with bone pain. It helped me a lot with bone pain.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2013 at 7:16am
Dear BanR,

I do not believe that FEC and AC are the same.

Here is a chart from Komen regarding different chemotherapy drugs. MD Anderson Cancer Center (MDACC) is one institution that seems to prefer FEC/T to AC/T. It is my understanding that the C (Cytoxan) in each regimen is the same but MDACC prefers to use Addrucil and Ellence than Adriamycin.

Good luck with your treatment.

warmly,

Steve


Chemotherapy drugs for early and locally advanced breast cancer

Figure 5.4 lists the most effective drugs for treating early and locally advanced breast cancer.

Figure 5.4: Chemotherapy drugs for early and locally advanced breast cancer 

Drug (abbreviation) 

Brand name 

 Cyclophosphamide (C)

Cytoxan

Docetaxel (T)

Taxotere

Doxorubicin (A)

Adriamycin

Epirubicin (E)

Ellence

5-Fluorouracil (5FU or F)

Adrucil

Methotrexate (M)

Maxtrex

Paclitaxel (T)

Taxol




Edited by steve - Oct 19 2013 at 7:18am
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2013 at 7:43am
Hi, BanR,
I had a lumpectomy, followed by a re-excision 2 weeks later to achieve a greater margin.  I had adjuvant chemotherapy beginning 4 weeks after the second surgery, which was what my oncologist preferred.  Wish you the best!
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 BanR Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2013 at 5:21am
Hey all..
Thanks for the responses again...
@steve. Fec and AC the difference I understand from one oncologist here is, fec is a more aggressive kind of chemo, since the f component is extra. It is mainly used for neo adjuvant setting where there is a tumor to chase and reduce the size. But for adjuvant setting, you don't have anything to chase apart from a few microscopic cells which may have been left behind. Hence AC but dose dense , since I am triple negative followed by paclitaxel dose dense again.
@charlene. Pls let me know which drugs are being given to u in chemo.
And wish you all a speedy recovery and I hope very soon they find a way to target cancer instead of killing the entire body with chemo.
All my love..
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Nov 01 2013 at 6:20am
BanR,
I had Taxotere and Cytoxan, which some consider "light."  I finished in Aug. 2010.  My life is back to normal at this point.  I did not get a second opinion at the time.  From what I have learned since, the chemo choice was probably influenced by my stage, size of tumor, grade and my age.
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 BanR Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2014 at 5:14am
Chemo Ac completed finally. The first 3 infusions were dose dense and the last one happened with 10 percent dose reduction and giving me 3 week interval instead of 2, because the blood counts had dropped down terribly inspite of the neulasta shots.
Have begun dose dense paclitaxel. Coping with fatigue and throbbing pain now. And then radiations will follow.
Am midway but feel as if I have been in this mess since ages.
My tumor was pretty strange.
The core biopsy said triple negative -pure.
But after lumpectomy the pathology report says, Its 85 percent triple negative with 15 percent hormone positive cells too. At the same time it showed medullary features. So they named it Atypical Medullary carcinoma. At the same time its also Invasive in nature. And it was a moving lump, which made doctors initially think that its not malignant but benign. A doctor pointed out that my Ki-67 was 40 percent, which means very aggresive but in the Pet Scan the Max-Suv was only 2.0, which means not that aggressive.  BrCa1 comes negative and Brca2 has a mutation of unknown significance ( no known family history though apart from a very distant relative getting ovarian cancer at young age) 
I have this feeling that it is genetic, since i got a TnBC at 35. If not brca1, if not brca2, then may be some other gene which they have not found yet. Or maybe my brca2 mutation  does have some significance. 
I wonder what will happen from June onwards, when my treatment will be over, and I live with a fear of getting it back and worse, to live with a fear of metastasis.
I am happy to have an online forum like this to discuss and vent out my fears on and off. All your replies have been very valuable.

Good wishes.
BanR, age 35
stage1, IDC, 0/3 nodes, No LVI, Clear margins, Grade 3, TNBC. 



Edited by BanR - Jan 13 2014 at 5:57am
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2014 at 6:10am
Dear Ban,

I am sorry you are having a tough time with your treatment. My daughter, who was diagnosed at age 36, and many others here, also had a tough time. Fortunately she is now 9+ years out from her treatment and is NED (No Evidence of Disease). 

At some point you will be done with your chemo and should have a bit of a break before you start your radiation therapy. That might be a good time for you to review your diagnosis and treatment plan by getting a second opinion. 

Depending on where you live, I might be able to make some suggestions regarding that IF you would like to talk. I am a volunteer patient advocate and I am sending you my contact information. And I am not a medical professional and will not give you medical advice. 

Good luck to you..

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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Post Options Post Options   Thanks (1) Thanks(1)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2014 at 9:24am
Dear Ban,
I am sorry you are having such a difficult time with treatments.  Also, sorry you are having so many inconclusive questions about your particular situation.
 
I am glad you were able to follow thru with the AC, although the last treatment was in an altered state.  Please keep fighting to get through the paclitaxel treatments.  It is difficult and painful, but in the final analysis it is in your favor.
 
As Steve said, you will get a break between the chemo and radiation.  This will give you some time to feel better for a while.
 
I saw a lady opt out of her last paclitaxel treatment last week because she was tired of being tired.  I hope her decision doesn't come back to haunt her. 
 
Stay in touch so that your hugh SUPPORT GROUP here can cheer you on.
 
Love and 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 - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 13 2014 at 11:22am
BanR,

Congrats on finishing the AC part of your chemo treatment.  Hope the taxol side effects are much more manageable for you.

You talked about your BRCA testing results - Brca2 has a mutation of unknown significance.  Are the genetic counselors recommending any risk reducing procedures?

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 believer Quote  Post ReplyReply Direct Link To This Post Posted: Jan 20 2014 at 10:06pm
Hi, This is a question aimed at Steve or anyone else that would like to chime in. I am headed for MD Anderson tomorrow. Triple negative, 1 node, 3.3 cm mass, grade 2, age 46. I am inquiring into their chemo regime which is different than other standard protocols, even the one at the local university I had my first opinion at. Is their an opinion as to if MD had a good protocol and how they have measured their success based to other protocols? I'm so scared and trying to make a good decision on where to be treated even though it is far from home. Thank you so much & hugs, Believer
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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 7:20am
Please post the protocol.  When I was diagnosed back in August of 2011, I was trying to make the decision of going to MD Anderson or Methodist.  I chose to participate in a clinical study at Methodist
and that was the right decision for me but curious as to what the protocols are for MD Anderson.
 
Best Wishes !!  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 23 2014 at 1:33am
Hope you are doing well. That good you have finished your chemotherapy sessions. My friend was diagnosed with second stage of breast cancer. She got the surgery and then two sessions of chemotherapy were asked by the doctor but she decided to have tomotherapy which is modulated radiation therapy. Now she is healthy and fine. She got tomotherapy from Gradoclinics at Yuma, AZ. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BanR Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2014 at 10:22am
as far as i know, MD Anderson, follows the neoadjuvant dose dense chemo protocol. Followed by surgery to determine PCR.
What i want to know is  in a case, where the tumor doesnt respond to chemo drug combination1, then they switch over to chemo drug 2..doesnt this delay allow the tumor some extra time to move from one stage to another?  what if it doesnt respond completely to drug 2 also and patient ends up with incomplete PCR. if tumor doesnt respond well to chemo then does current medical science have any other therapy for tnbc? i dont think so. 
does surgery first, allow some survival benefit by itself?
p.s. Steve could you provide some insight too


Edited by BanR - Jan 24 2014 at 11:03am
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