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BRAC1 positive triple negative

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LouiseB View Drop Down
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    Posted: Nov 12 2016 at 8:31pm
I am going to do chemo treatments in Dec and was wondering what type of chemo you had and 
what worked for you?  I had a bilateral mastectomy 2 weeks ago and no chemo before hand. 
Any advise would be helpful.



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Jacklin View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 12 2016 at 9:29pm
Hi LouiseB, sorry you have to be here but glad you found this forum. It's a wonderfully, supportive place where you can ask all your questions.

My chemo consisted of 4 treatments of adriamycin and cyclophosphamide and 3 treatments of taxol followed by bilateral mastectomy and then 25 rounds of radiation. 

What worked for me? Drinking lots of water, making sure I was listening to my body, taking naps when I needed to, keeping myself isolated from others while in chemo, walking every day (even when it was very cold and snowy), spending time in prayer every day and having lots of prayer warriors, posting here when I had questions or concerns, laughing as much as possible or at least trying to keep my sense of humour going, accepting meals prepared by friends, not fretting about the little things (like dust balls rolling along the floor), connecting with other women who were having treatment, doing something nice for myself every day, allowing myself to cry when I needed to. Hope these ideas help and hope that you will find comfort and support here like I have.

Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2016 at 1:33am
Hello, Louise! I hope you are healing well from your mastectomy, I'm sorry you've had to find yourself here but happy you've joined us for support and such. I also had surgery first but a lumpectomy rather than mastectomy and then went right into chemo 10 days later which consisted of adriamycin and cyclophosphamide (known as AC) every 2 weeks for a total of 4 treatments and then once a week paclitaxol (known as simply T) for 12 straight weeks. Also did 6 weeks of radiation which I highly recommend considering, even with mastectomy.

I think EVERYTHING in the above post from Jacklin is right on the nose, especially the keeping hydrated part. My nurse told me that dehydration is the main reason people end up in the hospital during chemo so water, water, water! Also, take the anti-nausea meds as prescribed, they work amazingly well and I found I only needed them for the AC portion of chemo and not the T as I tolerated it well and had no issues at all with it. If you need anti-anxiety meds, Ativan is most helpful and I thank the Lord I had/have it. Above all, come here and ask any question any time and you'll get the support and answers you need, I'm sure Smile Take care and best wishes!
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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LouiseB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LouiseB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2016 at 11:26pm
Thank you both for your information. My doctor is saying no radiation for me since it didn't get into the lymph nodes and my margins came back clean. I thought you only do radiation when it has spread, is that correct? AzNikki are you BRAC1 positive and triple negative? 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote AZNikki Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2016 at 12:16am
Hi again, Louise! I tested negative for BRCA1 and 2 so I can only go by what I've seen from others in that regard. Did you have any nodes removed and biopsied during your mastectomy surgery? I'm a big advocate for radiation as on OCCASION the tumor doesn't always drain only to the sentinel nodes, there are mammary and chest nodes as well and I like to cover all my bases! Do you know what chemo regimen you'll be doing yet?
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CathyJ Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2016 at 8:42am
Hello to all. I recently completed 4 AC treatments. My next step is 4 Taxol every other week for a 3 hr. infusion. My question is if anyone here started experiencing tingling in their feet and fingers while on AC. My Oncologist said it happens, so now I'm concerned the Taxol will make it worse, since that is another side effect (i.e. peripheral neuropathy). Has anyone here had any success combating the neuropathy during treatment? Taking L-Carnitine or B Complex while in treatment? Any suggestions are greatly appreciated. Thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jacklin Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2016 at 11:15am
Hi CathyJ, like you, I also had tingling in my hands and feet especially during A/C treatment. I did use an ice-water-bath set-up for hands and feet for taxol and honestly don't know if it helped or not. For me, just the idea that I was doing 'something' rather than 'nothing' felt good. I did not take anything else for the neuropathy as my oncologist didn't want me to do that. Unfortunately, neuropathy is something that many of us experience while having chemo.
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2016 at 11:34am
LouiseB,

What was the size of your tumor?  Did they test you for the BRCA gene?  What chemo are they recommending for you?

You may want to look at this link from a few years ago.  It seems to be the trend, but there is no one size fits all treatment plan.  Many factors will come into play when deciding upon chemotherapy based upon your pathology and unique situation.


Wishing you the best.

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 LouiseB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2016 at 10:37pm
Hi Donna,  

Thank you for your post, I was tested and I am BRAC1 positive and triple negative. My 
tumor was 1.9 cm.  I saw an oncologist today and she wants to do carboplatin and taxotera for 4 cycles. She also wants to do a port in my chest, and I am in the process of breast reconstruction and would rather use my arm. Do they always do a port in your chest?

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2016 at 10:56pm
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 Lbsaeger Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2016 at 10:03pm
Hi
I'm triple negative and Brca 1 positive. I got a port in my chest for my chemo treatments.
Diag on yearly;6-16-16; TNBC-Stage 1-Grade 3; BRCA 1+; Tumor size 1.1cm.; Neg lymph; Dbl mast with exp; 7-28. Hyster after 6 M chemo;
Chemo 8/26; 4 doses AC every 3 weeks then Taxol x 12 weekly;
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lbsaeger Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2016 at 10:06pm
Hi Louise
I had a double mastectomy and 4 treatments of AC every 3 weeks. Now I'm starting 12 weekly treatments of taxol. I'm nervous about this new drug.
Lisa
Diag on yearly;6-16-16; TNBC-Stage 1-Grade 3; BRCA 1+; Tumor size 1.1cm.; Neg lymph; Dbl mast with exp; 7-28. Hyster after 6 M chemo;
Chemo 8/26; 4 doses AC every 3 weeks then Taxol x 12 weekly;
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2016 at 10:46pm
Lisa,

Hopefully others will chime in on their experience with Taxol, but most say they tolerate better than AC.  

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 Lbsaeger Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2016 at 10:52pm
I hope Donna.
I will be thinking about you
Lisa
Diag on yearly;6-16-16; TNBC-Stage 1-Grade 3; BRCA 1+; Tumor size 1.1cm.; Neg lymph; Dbl mast with exp; 7-28. Hyster after 6 M chemo;
Chemo 8/26; 4 doses AC every 3 weeks then Taxol x 12 weekly;
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LouiseB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LouiseB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2016 at 10:54pm
Hi Lisa, 

Wow, you sound just like me I am Brac 1 positive triple negative. I just got back from the oncolgist and he is saying 4 cycles of AC every two weeks and then 4 cycles of Taxol. I am getting a second opinion next week.  How are you doing with the Chemo? Did you want to 
do the chemo in your arm? I can't imagine having a port in my chest with the expanders in. I am 3 weeks today from my bilateral mastectomy. Be strong we can be there for each
other and if you want to talk on the phone I would love too. I had my hysterectomy 8 years ago when I found out i was BRCA1+

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2016 at 12:18pm
Welcome Louisa! So sorry you have need to be here, but so glad you found us.
 I too did the same treatment you've been prescribed 7 years ago.  I'm negative for the BRCA, but I do know that they're frequently adding the Carboplatin now for those that are positive. 
The port implantation in your chest is normally NBD, as is living with it in your chest.  It is MUCH smaller than the expanders that you have.  I was very grateful for it once the chemo grind started.  Every chemo treatment you first have a blood test - when you have the port they attach the IV once to your port, and from that one stick they draw your blood, then attach the IV for the chemo.  Mine performed like a Rock Star - it was great.  Getting it removed was a simple procedure done in the doctors office - very quick, painless and no surgery.  Todays ports can also handle the contrast given in tests like CAT, PET and MRI's.  Very handy! 
After my first Taxol I experienced neuropathy in my hands and feet - the hands were bad, I had trouble grasping the handle on our sliding door to go outside.  I did the ice bath for the last 3 and it worked like a CHAMP for me.  No additional neuropathy and what I'd had at first faded away.  It's an easy thing to do, certainly worth a try. 
Kelly
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lbsaeger Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2016 at 12:46pm
Hi Louise
Where are you from? They do different chemo here and there. You must be having double dose taxol. I had 4 AC three weeks apart then wait 3. For thevtaxol. I would love to talk to you. I had ductal ca and stage 1. It was 1.2 cm found on my yearly. I'm almost 4 months post op with bilateral mastectomy. I had 6 drains for 19 days. I did get a port. They didn't give me a chance to say no. You are having a total of 8 and I'm having 16. The surgery wasn't a big deal. I was awake and didn't feel it. It bothered me for a few weeks and it was because they put steri strips on and glue on top. That's why it pulled. I heard your veins can blow with this medicine. People wish they had a port after the fact. I can help you through this. We can help each other. I will give you my number through the inbox if I can find it.
🌺Lisa.
Diag on yearly;6-16-16; TNBC-Stage 1-Grade 3; BRCA 1+; Tumor size 1.1cm.; Neg lymph; Dbl mast with exp; 7-28. Hyster after 6 M chemo;
Chemo 8/26; 4 doses AC every 3 weeks then Taxol x 12 weekly;
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susanb Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2016 at 7:50pm
Get the port. I had the expanders and a port, both put in at the same time as my mastectomy. You do not want chemo in your arm. It will ruin your veins and possibly be painful. I loved, loved, loved my port. No pain no hassles, they just plug you in.
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote LouiseB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2016 at 5:30pm
Hi Susan,

Thanks for your information. Are you BRCA1 and did you do taxol also?
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LouiseB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LouiseB Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2016 at 5:32pm
Does anyone know of someone who decided not to do chemo that is BRAC1 Triple Negative? 
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