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VivianR View Drop Down
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Joined: Dec 30 2013
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    Posted: Apr 27 2014 at 1:16pm
Hi everyone!  I joined this forum right after I was diagnosed in December 2013.  So I'm not actually a New Member, but I wasn't sure where to jump back in.
 
After my initial diagnosis, I was sent directly to a surgeon, who had a mastectomy scheduled for me three days later.  I had started reading about breast cancer, and when I asked him about my from my markers, he had to look them up, and saw that I was triple negative.  This raised alarms for me from my reading, but he acted like it was not a big deal.  Nobody, at the breast cancer center at a major hospital even mentioned that I see an oncologist before surgery.
 
That afternoon I read a lot more, joined this group, cancelled my surgery and made an appointment at the University of Minnesota.   I ended up entering the I-SPY 2 clinical trial.  For the first 12 weeks I received taxol and an experimental drug which is an AKT inhibitor, I think the name is MK2206.  I have had one dose of AC, will have three more at 2 week intervals.  When chemo is finished I will have unilateral mastectomy and then radiation.
 
My initial tumor was said to be about 1.5cm on ultrasound, but then on MRI I had a solid area of tumor that was 1.5-2cm, but a surrounding area about 6cm in diameter that was full of dots, it looked like polka dot fabric.  They said it was probably hundreds of areas of NCIS.  I had 2 abnormal LN on MRI, one on my chest wall and one in my axilla--that one was biopsied and was positive.
 
I feel so very blessed because it seems that the chemo is working great.  At my 2 week MRI, the main tumor appeared to be breaking up, and the spots were going away.  At my 12 week MRI, it almost looked like a normal breast!  By the clip which was put in at biopsy, there is a tiny spot that they say could be tumor or scar.  The little spots are completely gone, and no abnormal looking lymph nodes.
 
Chemo side effects are getting more severe, especially with Neulasta.  I'm looking for support, advice and thought this would be a good place to start.   I know there a lots of posts here to read about my current problems--bone pain, fatigue, constipation, hemorrhoids, all that fun stuff!
 
Looking forward to hanging out with you guys.  I worked for the first 8 weeks of chemo, but these days I have lots more time.
 
Vivian
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Lillie View Drop Down
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Joined: Jul 10 2009
Location: Eastern NC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2014 at 2:13pm
Hi Vivian,
Welcome back. I am so happy that you had the "alarms ringing" episode. A second opinion certainly was the answer for you. Good luck as you continue to the finish line with your treatments.
As for the side effects, pain meds for the bone pain, rest for the fatigue, prune juice, stool softener, etc. for constipation. It will get better, I promise.

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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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: Apr 27 2014 at 7:20pm
Hi Vivian,

Glad you were able to get another opinion and join the I-SPY2 trial.  It looks like it is working for you.  You should be proud that you researched and advocated for yourself.  

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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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 27 2014 at 9:18pm
Vivian, so glad you came back!
I was just reading an article about the value of empowering patients and I wish everyone could have the courage, fortitude and tenacity that you've found in yourself! We are, after all, our own best advocates and like you I hesitate to think what might have happened if we'd just sat back for the ride thinking that the doctors who said 'it's no big deal' had all the answers.
You've made some good choices during what was a horrendous time to figure things out. I'm in awe of your courage!
I tell this story often...when I was into my chemo about 4 weeks I had to drive over the mountain pass, in the ice, with 2 dogs and a bad case of the runs. I had to drive slowly because of the black ice when I came around a corner and here came an SUV travelling sideways right at me. The SUV swung hard and went into the ditch. I pulled over, completely calm and said to the dogs, geeezzee I hope there's no blood. Once one starts the chemo journey it just seems that life's priorities line up in a row and all the 'little' (ha!) things that would have sent us into a tizzy before need to just get in line!
Take care!
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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SagePatientAdvocates View Drop Down
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Joined: Apr 15 2009
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 28 2014 at 9:10am
Dear Vivian,

I, too, welcome you back and thank you for sharing your story.

I echo Donna's words and admire you for advocating for yourself.

Wishing you continued success in this battle.

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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rayjorg View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rayjorg Quote  Post ReplyReply Direct Link To This Post Posted: Apr 28 2014 at 11:28pm
Vivian, so proud of you. Just hang in there. I know it is hard to believe but you will start to feel better. I never thought it would happen to me, when I could not even walk up the stairs. Today I rode 15 min on my bike!!! Physically you start to fee better, it is the mental that trips you up. The what if, everyday. I am 2 1/2 months out of chemo and 2 weeks out of radiation. I work with doctors and one of them described it the best, his wife has cancer also. He said, " It is like a black cloud hanging over your head everyday. You don't know if it will rain, or the sun will come out." We all hope for the sun. We are off to Mexico next week, because I want the sun! 

Vicki

DX: IDC TNBC 7/29/13 Age 58 Stage 2B BRCA Negative Grade 3 08/19/2013 Mastectomy RT Breast with expander placed
9/12/2013 Completed AC and doing 12 weekly Taxol.
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