Current Metastisis |
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Adrienne 
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Joined: Aug 30 2013 Location: Tulsa Status: Offline Points: 8 |
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 Topic: Current MetastisisPosted: Oct 04 2013 at 6:32pm |
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I was diagnosed with triple negative breast cancer March 15, 2013. I had a lumpectomy on April 3 and was diagnosed Stage 3A with 9/13 lymph node involvement. I regret having the lumpectomy before chemo but did not know any better. I did the usually AC-T and finished September 3. I thought I was doing pretty good. I started having pain in my neck and found out September 20 I had a lesion in my neck. I had emergency surgery September 21 and they were able to remove 1/3 of the tumor. I am now undergoing radiation of the spine and brain for ten rounds. They found 14 lesions in the brain. After radiation I will start the carbo/gemzar treatment. I am just wandering if I should be more aggressive to find clinical trials. I have met with MD Anderson once and asked about clinical trials but they have not been very responsive. Just looking for different thoughts.
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Natalie
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Joined: Nov 11 2011 Location: Bay Shore NY Status: Offline Points: 473 |
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Posted: Oct 04 2013 at 7:07pm |
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Adrienne,
I am so very sorry for what you have gone through, my heart is physically hurting for you. I am really sorry MD Anderson has not seemed responsive. It seems to me this is of the utmost of urgency considering it is continuing to progress. A clinical trial might be very helpful. Is your Oncologist in any way advising you on trial? I feel that office should be helping you in every way possible to look at other options outside of what they are doing or in conjunction with. Maybe someone here on the forum can suggest hitting MD Anderson in a different way. This is a really great place to come for not only information but unwavering support. I am sure more members will be along shortly. My prayers are with, Natalie |
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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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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Oct 05 2013 at 12:13pm |
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Adrienne,
Can you send Steve a private message? He's a patient advocate and may be able to help you with getting into MD Anderson or seeking another opinion. He's helped so many of us. I'm so sorry to hear of the progression. Donna
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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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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Oct 05 2013 at 5:16pm |
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Dear Adrienne, I am so sorry to hear about your dilemna. Please don't torture yourself with second guessing about your surgery and treatment. I know that when I was diagnosed I didn't know which way to turn.
How do you feel about the medical team you have now? Maybe you can get into MDAnderson, at least for a second opinion. Please keep posting and I pray that what you are doing now will work for you.
God Bless,
Lillie
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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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SagePatientAdvocates
Senior Advisor 
Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Oct 06 2013 at 1:08am |
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Dear Adrienne,
I am sending you a PM with my contact info. Maybe we can talk...I have a couple of specific ideas. I am not a doctor and will not give you medical advice but maybe it will be useful to talk. warmly, Steve |
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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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turtle
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Joined: Feb 05 2012 Location: Durham, NC Status: Offline Points: 161 |
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Posted: Oct 07 2013 at 12:37pm |
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Adrienne,
I am also sorry to hear about your progression, but as Lillie said, do not beat yourself up over your treatment decisions. None of us have a crystal ball, including our doctors! I do know that Carey Anders at UNC has a particular interest in TN brain metastasis, but am not up to date on the status of any clinical trials in this area. I'm hoping Steve or others on this forum will be helpful. Big Cyberhugs!! |
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DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery
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Adrienne
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Joined: Aug 30 2013 Location: Tulsa Status: Offline Points: 8 |
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Posted: Oct 07 2013 at 11:34pm |
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Thanks everybody for posting. It has encouraged me. I have an appointment with MD Andersons and I am trying to set one up with Carey Anders to see what course of action to take. I truly appreciate all of the responses.
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