Triple Negative-How are you doing?

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Tricia Keegan
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Re:Triple Negative-How are you doing? - Friday, May 23, 2014 6:57 PM
NN, glad you'll be watched more carefully from now on!
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

sthollow
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Re: RE: Triple Negative-How are you doing? - Wednesday, June 11, 2014 11:14 AM
Hello ladies!  My name is Sarah and I am 32 years old.  I have recently been diagnosed (5/13/2014) with triple negative invasive ductal carcinoma.  My tumor is large 5.2 cm and has a high grade of 3.  I was scared to begin with but now that they have confirmed that it's triple negative I am even more worried.  Initially my receptors came back er-/pr+ and her2- from my breast biopsy so the re-ran the markers on a lymph node they removed and it showed the same but the pr was only 2% which my onc said wasn't enough to be a true positive so therefore Its a negative.  I have had chest scans, 2 CT scans and a bone scan and as of right now it's contained to my right breast and a few lymph nodes (4 for sure) it has not spread.  He said that triple negative either responds really well to chemo or not so well.  I pray that mine responds well and shrinks, shrinks, shrinks!!  I am on 4 rounds of AC to be followed by 12 rounds of Taxol along with 4 rounds of Carboplatin.  Then I will be having my right breast removed entirely as they feel it is beginning to affect my skin (a little thickening and a slight bit of discoloration right over the tumor location).  Following the surgery I will be having 5-8 weeks worth of daily radiation therapy.  Then I will be having an elective mastectomy on my left breast...with permanent reconstruction to follow.  I am waiting on the results of BRCA tests which should be done soon.  Even if the test comes back negative I am heavily leaning towards a full hysterectomy.  They can slice me and dice me as much as they need to which I think shocked them.  I guess they figured since I was so young I would want to take the conservative route but I want them to be just as aggressive with treatment as this cancer is being with my body.   I just wanted to reach out to women in my same situation for support and suggestions and stories...really anything anyone has to offer I would love to soak up.  I have been searching for blogs so if anyone knows of any pertaining to TNBC I would love to follow them.  I HATE googling info TNBC bc it's never very positive.  My oncology team at MD Anderson is very confident about my course of treatment but I have random moments of weakness when fear creeps in.  I have a 3 year old daughter and 3 month old son whom I want to watch grow up...that's usually when the tears begin to flow thinking about them.  Thank you to anyone who responds and all of you are in my thoughts and prayers.  
Sarah XOXOXO 

Tricia Keegan
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Re: RE: Triple Negative-How are you doing? - Wednesday, June 11, 2014 3:35 PM
Hi Sarah,

There are many long term survivors of triple neg cancer here and I'm sure they'll reply soon but feel free to pm any of the ladies as I'm sure they'll be happy to offer support and advice to you.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Nuzzys Nana
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Re: RE: Triple Negative-How are you doing? - Wednesday, June 11, 2014 8:10 PM
I'm sorry you have to face this ordeal and especially at such a young age. I am a 9 year "prevailor" of TNBC. I have always been told, by professionals, that chemo works best on fast growing cells. I never heard the phrase "sometimes it works and sometimes it doesn't". That can be said about any treatment for any illness. After two years I stopped worrying so much because I believed that by that time the beast would have reappeared if it was going to. Slower growing categories of bc can reappear after many, many years though.***********Lots of statistics regarding bc and other cancers are based on old studies and do not reflect new, updated treatments.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

sthollow
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Re: RE: Triple Negative-How are you doing? - Wednesday, June 25, 2014 10:58 PM
Nuzzys Nana-

Thank you so much for your response.  It's wonderful to hear from someone who has "prevailed" as you have.  I will be having an ultrasound before my next AC treatment and I am anxious to see what's going on if anything...hopefully some shrinkage!!!  I am still awaiting my genetics results.  Thank you again for your encouraging words :)  Being on this message board has provided me with tons of info and connected me with wonderful women...it's been very uplifting in such and uncertain time in my life  ❤️❤️❤️

Nuzzys Nana
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Re: RE: Triple Negative-How are you doing? - Thursday, June 26, 2014 10:56 PM
Please keep us posted. We're all rooting for you.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

sthollow
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Re: RE: Triple Negative-How are you doing? - Monday, July 14, 2014 1:24 PM
Hello Ladies!!!  I just wanted to report some encouraging news.  I had an ultrasound this past Friday and my tumor has decreased in size by 95% after just 2 rounds of A/C.  The lymph nodes under my arm have regained benign appearance.  I had two enlarged lymph nodes in between my breasts in my sternum area that also shrunk...one 53% and one 79%.  My onc was very pleased with my results seeing as I still have 2 more rounds of A/C, Taxol x 12 and Carboplatin x 4.  I did get my genetics testing back and I tested negative for 5/6 mutations.  My BRCA2 came back inconclusive...figures.  I am focusing on the positive that chemo is working.  I just wanted to share since you have all been very supportive.  Hope you all are having a wonderful day!!

Sarah xoxo 

Tricia Keegan
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Re: RE: Triple Negative-How are you doing? - Monday, July 14, 2014 1:43 PM
Thanks for updating us Sarah and I'm so happy for you that you've had such a good response to the drugs, well done and you'll soon be finished with all this at this rate.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Nuzzys Nana
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Re: RE: Triple Negative-How are you doing? - Monday, July 14, 2014 8:57 PM
I'm glad to learn that you are doing so well. As for the genetic tests - I assume you were tested for BRCA1 also. I have never heard of a genetic test being "inconclusive". That is interesting. I had no idea that was a possibility.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

karey
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Re: RE: Triple Negative-How are you doing? - Tuesday, July 15, 2014 1:24 AM
Hi Sarah, I was diagnosed with triple negative breast cancer in December 2007. I opted for a lumpectomy and also had dose dense chemo (4 rounds of AC and 4 round of taxol every two weeks) and radiation. I am six years post-treatment. Like you, I was hit with all the bad news about being a triple negative. My oncologist put it all into perspective for me. As was mentioned before,I learned that triple negatives can actually respond extremely well to chemotherapy and actually, two years post-treatment is a huge milestone for us rather than five years for our odds of having a recurrence drop dramatically. He also told me that the bad news was there were no drugs for me after I completed chemo and rads. Without missing a beat he told me that was also the good news for those drugs are not without side-effects which can sometimes be unpleasant and even serious.
Kathy
Diagnosed at age 47
DX: 12/13/07 IDC Stage IIa Grade 3 3.5 cm TN
Lumpectomy 1/30/08 SNB neg
Chemo-2/29/08: 4 A/C 4 Taxol-Done 6/6/08! NED!
33 Rads 7/7/08-8/20/08 Done!
12/10/09 Now Ruptured Brain Aneurysm Survivor!

sthollow
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Re: RE: Triple Negative-How are you doing? - Wednesday, July 16, 2014 10:35 AM
Thank you Tricia!!  I am ready to be done with chemo but tit makes me very nervous as I am not a candidate for drugs like Tamoxifen so I feel once I am done with active treatment I am a sitting duck.  But I trust in my docs!!!

NN - I was kind of bummed about the inconclusive test result myself. I am BRCA1 neg but the isn't enough data /research  available at this time to identify the variant in my bloodwork to be BRCA2 pos or neg.  haven't talked to onc about it yet but will be soon.  

Kathy - the whole triple negative thing is very scary.  When I was first diagnosed my path report showed er-/pr+ so as I was researching online (bad idea) I kept seeing triple negative info pop up.  Well come to find out after re checking markers on my lymph nodes my pr+ wasn't positive enough so they considered it a negative...boo!!  My doc told me exactly what you just said about the aggressiveness but how it can respond really well to chemo...thankfully mine has so far and I still have about 3 1/2 months to go before surgery.  He also mentioned how 2-3 years was the timeframe for TNBC C.  I think it is wonderful and inspires so much how to know that you are 6 years out.   Thank you for your comments!!  

Sarah XOXOXO 

Sadie Rose
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Re: RE: Triple Negative-How are you doing? - Sunday, March 22, 2015 10:19 PM
Hello Everyone,
I haven't been on this board for awhile.  I do read messages more than I post.  Everything had been going along really well until my last visit with my oncologist.  I recently had a difficult biopsy that took three hours to complete.  It came back fine, but it triggered my oncologist to suggest bilateral mastectomy.  She told me my risk for a recurrence is going up even though I am more than ten years our from my original treatment.  My surgeon's office called me too and set up an appointment for a genetic study and an appointment with a plastic surgeon.  I met again with my wonderful oncologist who spent 2 1/2 hours with me discussing my risks.  The outcome is I am scheduled for a bilateral mastectomy in April.  

Tricia Keegan
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Re: RE: Triple Negative-How are you doing? - Monday, March 23, 2015 6:32 AM
Hi Sadie,

I'm sorry you have to face more surgery so later after your dx but I'm glad to know you're doing well otherwise this far out, as am I.  Sending you good wishes for a successful surgery and hope you'll keep us posted.Pals
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Nuzzys Nana
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Re: RE: Triple Negative-How are you doing? - Monday, March 23, 2015 1:58 PM
Dear Sadie, I am sorry to learn about your recent biopsy and scheduled surgery. You and I were diagnosed around the same time, I believe. I also had a biopsy about a year ago and it came back benign. This was an area that had been on a "watch list" so I was relieved that was it okay. Still, these things can be worrisome. I will have my ten year "cancerversary" in April to my surprise, because when first diagnosed I was categorized as a "poorer outcome". And that was before testing positive for the BRCA2 mutation.*************I hope everything goes well for you. Keep up posted on your recovery.
Lumpectomy 4/14/05 at age 69
Stage 1, 2cm, Node Negative
Grade 3, Triple Negative
AC/Taxol, Radiation,
BRCA2 positive (It's always something!)
No Family History

Sadie Rose
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Re: RE: Triple Negative-How are you doing? - Friday, March 27, 2015 12:20 AM
Thank you Tricia and Nuzzys Nana for the special wishes.  I feel like I am on the count down now.  I have researched everything I can, I put together an excellent team and I invited my friends to send me happy, funny and positive messages.  I's seeming a physical therapist tomorrow who will give me hints for recover.  I have my special cami tops with the drain pockets. I've read all the hints post by others who have had the same surgery. I'm as ready as I will ever be.  Now it is hard to wait until April 14th.

 


Tricia Keegan
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Re: RE: Triple Negative-How are you doing? - Friday, March 27, 2015 5:13 AM
Will be thinking of you Sadie.xx
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Sadie Rose
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Re: RE: Triple Negative-How are you doing? - Saturday, March 28, 2015 11:30 AM
I have an appointment with a physical therapist yesterday.  She gave me exercises to do before surgery to help with recovery afterwards.  I think it is helpful to have something proactive to do.  She also recommended massage therapy before surgery.  The goal is to loosen all the muscles before the trauma. :)

karey
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Re: RE: Triple Negative-How are you doing? - Thursday, April 02, 2015 9:44 PM
Hi Sadie, I am sorry to hear about your surgery but am very glad that the biopsy was negative. I will be thinking of you as well.
Kathy
Diagnosed at age 47
DX: 12/13/07 IDC Stage IIa Grade 3 3.5 cm TN
Lumpectomy 1/30/08 SNB neg
Chemo-2/29/08: 4 A/C 4 Taxol-Done 6/6/08! NED!
33 Rads 7/7/08-8/20/08 Done!
12/10/09 Now Ruptured Brain Aneurysm Survivor!

Sadie Rose
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Re: RE: Triple Negative-How are you doing? - Friday, April 03, 2015 8:15 PM
Thank you Karey!  I appreciate your thoughts.  I am counting down to my surgery.  I have 10 days to go.  It will actually be 9 by morning!

Sadie Rose
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Re: RE: Triple Negative-How are you doing? - Saturday, April 11, 2015 2:15 PM
I have 2 days before my bilateral mastectomy.  It seems unreal!  I closed my office for a month and Friday was my last day.  I think i am prepared.  I have my shower chair, a shampoo funnel, my cam is with drain holders, a wedge for the bed, a variety of pillows, all of my prescriptions filled, some soup for the first day, coffee :-), and a variety of other small items.  I have my bag for the hospital packed and now I am just waiting.  I could clean house again, but maybe that will happen tomorrow.

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