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My TNBC is back

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Cbardar View Drop Down
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    Posted: Jul 22 2017 at 8:07pm
I was just getting my life back to normal. Then went to the doctor found a small lump that shows my TNBC is back. I had bone scans and CT on Friday meeting my doctor Monday for a plan. I pray it involves a clinical trial. Anyone out there going through this? I am scared it's only been a year since my last chemo. Which I did 16 rounds and a had double mastectomy. I am praying that I Find a clinical trial.
Trying to stay positive have a 12 year old son and amazing husband. Would love to be around for awhile. I hope someone can help
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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Jul 23 2017 at 5:48pm
Hi Cbardar,
Although I have not experienced what you are going through, I want to encourage you to be proactive and research the clinical trials which are out there.  The home page of this website has a rectangle which you can click to see several different screens, and one of them is "Clinical Trials Matching Service for TNBC Patients".  You can call or e-mail them.  I was so nervous after finishing treatment that I e-mailed them just to have a list of trials available, and someone called me back with info.  They are very friendly and knowledgeable.  Please let us know what your doctor offers.  If you do not agree or want to find more options to choose from, definitely look at your clinical trials.  My heart goes out to you, and I hope you will hear some good news from your doctor.  Please stay in touch.
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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: Jul 24 2017 at 7:58am
Cbardar,

I'm so sorry you are dealing with a recurrence.  Where did you find the lump?  I agree with what Susan posted.  Check out all your options, even get a second opinion.  I recurred about a year after finishing chemo.  I was able to get into a clinical trial and then sought 3 opinions on radiation treatment.  

Here's another link to clinicaltrials.gov  You can refine the search to meet your requirements, eg, by state.

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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Cbardar View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cbardar Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2017 at 8:27am
123 Donna, thank you I am going to get a 2nd opinion
We have a really good Cancer hospital in town and I hope there might be a trial going on that I fit into. I find out today what I am dealing with it just sucks. I live in Ohio so I also am looking at Cleveland clinic. I hope I can try something
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2017 at 3:54pm
I am confused, what is the significance of getting into a Clinical trial versus just aggressive treatment? What am I not understanding?

Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2017 at 4:20pm
Hi Penny,
My understanding is that most people reach out to find a clinical trial when their prognosis is worse than average or, as in C's case, a recurrence.  There is at least one subset of TNBC which is resistant to the standard chemo protocol, and if there is a recurrence, there is a possibility that you are dealing with that subset.  I remember asking my oncologist if he recommended any clinical trials in my situation, because I had a small tumor, but it was already in 2 lymph nodes (macro cells).  He felt confident that the TAC regimen was sufficient, and I felt a rush to start chemo, so did not investigate further.  However, faced with a recurrence, I would definitely see what is out there, knowing that my first chemo protocol did not knock this out.  The woman I talked to from the Clinical Trials Matching Service told me most people look at the available clinical trials when they are faced with their next step in a treatment decision.  That is my understanding, and that was a good question!
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2017 at 12:15am
Hi Susanin

OH, I had no idea.  Thank you for clarifying.  I would not have put two and two together.  

Thanks, Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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susanb View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susanb Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2017 at 11:34am
Have you seen this:
http://www.breastcancer.org/research-news/brca-status-may-affect-response-to-treatment

And where in Ohio are you? If you are in or near Columbus please be seen at the James.

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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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: Jul 25 2017 at 12:38pm
Cbardar,

Are you seeing Dr. Jame Abraham at the Cleveland Clinic?  He's a highly regarded expert on TNBC. 

https://my.clevelandclinic.org/staff/18395-jame-abraham

http://health.usnews.com/doctors/jame-abraham-22055


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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Cbardar View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cbardar Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2017 at 6:26pm
I am actually trying to get into the James. I am with Riverside and Md Anderson doctors are working together on my case to see what the best treatment option is. scans came out clear for lung liver and bones.The lump.looks to be local recurrence going tonight for a chest MRI to see if cancer is in my lymph nodes. The ultra sound showed clear nodes. Just want to make sure I get the best care I possibly can get. I have one chance. My tumor is very aggressive she said. Since chemo didn't work the first time. Looking at clinical trials. Pray for me please.
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Penny View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Penny Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2017 at 7:36pm
I am praying for you!!!!!!!
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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SusaninVA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusaninVA Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2017 at 11:07pm
Praying for you as well, C - I hope you receive the very best of care and that your doctors will be inspired as to what course of treatment will totally take care of this recurrence.  So thankful to hear that so far all your scans have been clear.
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