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Julie Ann View Drop Down
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    Posted: Jan 01 2018 at 11:21am
Hello I'm Julie

30th November 2017 I was diagnosed with triple negative ductal carcinoma grade 3.

I'm 47 and in shock mode. I've had 42 hospital appointments and or procedures to date. December 20th I had my first chemo. Day after tomorrow my second of in total 16 rounds. I'm scared and overwhelmed with the developments of the last 4 weeks and the urgency I sense.
I know nothing about breast cancer and need to study up.
I'm a very positive person.

After chemo I have a surgery planned and radiation therapy.

I'm looking at a year of cancer related life..

I would love to interact with fellow sufferers and survivors.
I feel THEN I will be understood and supported through mutual knowledge.

Feel free to approach me, I don't bite LOLSSSSSSSSSS..
This is the beginning of exploration of this site. Bear with me!

Julie

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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 01 2018 at 12:42pm
Julie,
Let me be the first to welcome you to the MOST supportive blog of everything TNBC.
First? Stay off google, it will really do nothing except get you depressed with doom & gloom thinking you have to get your affairs into order. NOT the case! Although yes it is a beast of a cancer it is NOT a death sentence. many many survive & thrive even with side effects.

Wow 42! :( What chemo are you doing? I did ACT as it says below with the nuelasta show at the office the next day. Unfortunately yes, it will be a year or a little over before all said & done, but it will go by quickly even if it does suck.

Do you have a support system? Family friends etc.? call upon them for help, now is not the time to try to do it all. Listen to your body and do not push yourself.

i am sure others will be along soon.
Any questions, no matter what they are are welcome. Rant, share the happy stuff whatever it is you can bring to this place.
Natalie

TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Falcon Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2018 at 7:29pm
Hi Julie,

I will be keeping you in prayer. I went though this with my daughter in 2009 she now is 40 and living life to the fullest.

here is my cell 815-8021 if you ever want to call or text me I'm here for support.

Susan Falcon
My daughter Jessica
Treated and Healed!!!!!
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Asovey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2018 at 1:19pm
Hi Julie:

I was also diagnosed last November.  I have stage 2 or 3 (they are not sure), grade 3 invasive ductal carcinoma.  What stage are you?  I totally understand what you are feeling.  I just had my first round of dose dense A/C on January 5th and I have my second round on Friday.  Two more rounds of the A/C every other week and then 12 weekly rounds of Taxol and Carboplatin.  Then surgery.  Depending on the outcome of surgery, there are different options.

My best advise is to get a second opinion.  I went to Slone Kettering in NYC and had a consult with Dr. Tiffany Traina.  Best move I ever made.  Dr Traina is a specialist in TCNB and known nationally. She agreed with the plan my local cancer center made - but with some CRITICAL additions.  When I got home, my local cancer agreed to do what she suggested, but it made me wonder why THEY had not suggested her additions in the first place???  You have to be your own advocate.  Hopefully, you are being treated at a major cancer center that has a DEDICATED BREAST CANCER CENTER.

Susan is right!  This site is invaluable!  So much knowledge and support!  If you would like to email my my personal email is:  soveyann@msu.edu.  Text or call:  517-231-2515.

Hang tough!  As Dr. Traina says, TNBC IS CURABLE!

Ann Sovey
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tlrtoffee Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2018 at 8:35pm
Hello. Glad to know you got what u needed from Dr. Traina. I have same ex as you have. Would you share the additional information she gave you to help tour treatment plan along? I’d like to know as it could benefit me. I would bring it to my local oncologist.

Thank you very much.

Tammy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote amcb Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2018 at 9:53pm
Hi Julie
It will be about a one year journey, then it will still be in your mind a lot for awhile after that, but it does begin to be less and less a central part of your life as time goes on.
I am 7 1/2 years out. Stage II, Grade 3, Metaplastic spindle cell, no nodes, all negative genetic testing, double mastectomy with reconstruction after treatment. I did four months of chemo (ACT), had some side effects and am left with a little neuropathy in my finger tips and toes, but all in all I feel good. The reconstruction took almost a year to finish, and I accept its minor imperfections. My hair grew back - very important! We all have different experiences, but are tied together by this miserable disease and hope to provide support for others traveling this path.
BTW I lived in Veldhoven from 1995 -1998. 
Anne
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Asovey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Jan 17 2018 at 6:28pm
Hi Tammy:  Dr. Traina agreed with the 4 cycles of A/C followed by 12 weekly Taxol.  She added Carboplatin with every third Taxol infusion.  The Carboplatin is especially important if you are looking at breast conservation.  Reasearch supports the Carboplatin as it increases the pCR with surgery.  If you choose a mastectomy, you would not have radiation.  Lumpectomy requires radiation.  Be aware that the survival statistics are the same with either of those options.

If surgery does not produce a pCR, she suggests 6 months of catecitabine.  If you do get pCR it is not needed.

She also had my biopsy tissue tested for androgen receptor status.  This is a big area of study for TNBC.  I tested positive for androgen receptor status.  There is a big trial going on now with Enzalutamide as a targeted therapy.  It is showing real positive results.  I will most likely do that.

She also is very strong for genetic testing.

My local cancer center agreed with her recommendations.  I am still left to wonder why they did not suggest the same thing.  If you are not being treated at a MAJOR cancer center with a dedicated breast cancer department, I would HIGHLY, Highly suggest you get a second opinion as I did.  Could be a life or death decision.  Best move I ever made!

Hope this helps!

Ann
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Julie Ann View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Julie Ann Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 4:10am
Thanks guys for your support. Having tough aftermath of third chemo.
Will get back soon.

Julie
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Julie Ann View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Julie Ann Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 4:12am
I'm doing AC Chemo

Doxorubicin and Cyclofosfamide
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Beth TNBC View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth TNBC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 12:46pm
Hello Ann,
I was also DX in Nov. with TNBC. I am almost finished with 12 weeks of Taxol & Carboplatin (every 3rd infusion). I am not familiar with pCR, can you tell me more?

Thanks,
Beth
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 1:17pm
pCR means pathological complete response. When you have your surgery, if you have pCR it means there ar no live cancer cells found in the tissue that was removed. What we all hope for. Carboplatin with the Taxol has proven to increase the odds of pCR.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth TNBC Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2018 at 6:24pm
Thank you
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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 23 2018 at 7:28pm
Here's a list to a thread talking about abbreviations.  



Also a good site for drug information:



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 Tlrtoffee Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2018 at 3:42pm
Thank you so much for this information!

Blessings,
Tammy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote a4gc Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2018 at 5:27pm
Hello, 

I am a new member to this site. I am 40 and was diagnosed 9/7/17 with Stage 2A TNBC. Upon diagnosis I had a bone scan, CT chest scan, CT body scan, bone scan, echo, and some other tests. I have completed 4DD AC and 4 DD Taxol. I have surgery scheduled for Monday and I have so many thoughts running through my mind. I am having a bilateral mastectomy with immediate reconstruction. They don't believe I have node involvement based on the multiple tests they had done at the beginning and an extra ultrasound just to be sure. I, of course, am still concerned. My tumor was 4.3 cm and my doc can't feel it anymore. I am praying for a full response. I like to check these sites to hear about long term survivors and all survivors and how you go on with you life after this very scary experience. I have a 10 yr old and a 13 yr old and every time I think about them, I cry. This is a tough road. I hope everyone is doing well. 

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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 25 2018 at 7:30pm
A4gc,
I am so sorry you are having to fight with this dragon, but so glad you found your way here
This is where I found the most support. Sure sounds like you have a lot to live & fight for. All of your emotions are real, expected and validated.
I have found meditation, yoga and nature to quiet my mind. A nice hot bath with a book as well among other things.
I am going on 7 years from diagnosis in April. I will tell you this, this next part is nothing compared to where you have been. Keep milking the drains to avoid clogs, use a recliner or wedges in bed if you can because getting up and down for a short while is challenging.
Take painmeds as prescribed, easier to stay ahead of pain rather then try to get it under control. Pay attention to doctors orders not pushing yourself.
Your babies are seeing a wonderful fighter and model of grace & strength ♡ they will realize it even more as they grow into their own

We are here for everything. Keep us posted on recovery.
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote a4gc Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2018 at 10:29am
Thank you Natalie. This stinks. Thanks for the tips for after surgery. I really do appreciate them. I have been doing a big of yoga and meditation and I love being out in nature. This whole thing is so scary. I want to get back to my normal life and it feels like it will never happen. Thanks for being here. 

Anne
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tacoates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2018 at 12:58pm
Hi Julie - so sorry you are going through this.  My name is Tracey and I literally just became a member 2 minutes ago.  I am 46 and was diagnosed in October.  are you going through ACT?  staying positive has helped me as well and surrounding myself with supportive people.  although i'll be honest, it started to drive me crazy every time someone said "stay positive".  I want to shout say something else..  lol...
 
how are you holding up?  how was your first treatment?
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Julie Ann View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Julie Ann Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2018 at 8:43pm
Hi Tracey,

Thanks for your kind words.
I've had 3 rounds of chemotherapy now. Wednesday my fourth.
The first two were fine. No noticeable effects.
The third was horrendous, about 5 days after I was literally feeling like I was dying. I wasn't even on this planet. I felt terrible.
After 3 days of that I started to feel a bit normal again.
It's an indescribable.
I'm doing act too.

What's your treatment plan?
It's really nice to read all the responses here.

Big hugs Julie
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