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I am new and have questions

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Rxmaso2 View Drop Down
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    Posted: May 10 2016 at 8:56am
I was one year with no evidence of disease after my first fight with breast cancer. I had 3 primary tumors in my left breast. I did 12 rounds of Taxol and 4 rounds of A/C. I then had a bilateral mastectomy and 3 lymph nodes removed. No evidence of cancer in the lymph nodes and clean margins after surgery. I was stage 2A. I had a CT scan done in March 2016 and found a large tumor in my left lung several smaller tumors in both lungs. I also have a mass on my left chest wall. I started Gemzar and Carboplatin a month ago. I was told 1.5 years is an opttmistic number of life expectancy. I just want some hope. Has anyone had the same situation with a miracle and lived longer? Thank you.
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caregiver20 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote caregiver20 Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2016 at 11:13am
I'm so sorry to hear about your recurrence, Rxmaso. My wife has had a surprisingly similar experience, although her recurrence has only thus far been found in mediastynal and supraclavicular lymph nodes. I'd encourage you to take a look at some of the immunotherapies that are available. Have you had genetic testing done? My wife did through a company called Oncoplex and it helped us recognize which things might work and which might not. For example, if you're BRCA+ platinum agents can be helpful. Are you sure the most recent tumors are also TN? Sometimes new tumor cells have mutated, perhaps to HER+, which might open up herceptin as an option. There are also clinical trials for a number of options, including PARP inhibitors (again, usually only effective for BRCA+), PD1 or PDL1 inhibitors (if your tumor has the appropriate receptors), and some for those with androgen receptors. Hope that helps. 
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Rxmaso2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rxmaso2 Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2016 at 11:24am
Thank you for your response. I am BRCA negative. The tumors were tested and showed triple negative again. My oncologist had additional testing and I'm not a candidate for androgen. He had told me that chemotherapy is the best option for longevity of life. I'm going to have a second opinion on radiation. He has said that radiation is typically only done with terminal patients to manage pain. He is a straight shooter and I have liked that about him, but the most reason news has been extremely tough to handle. I'm glad to hear from people who are experiencing similar situations.
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caregiver20 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote caregiver20 Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2016 at 5:54pm
Sorry to hear all of that - we're in a similar boat, as my wife's tumors seem to lack all targetable receptors. We have her quarterly scans coming up, and are feeling very nervous (she's been having a dry cough and shortness of breath and we're concerned about possible lung mets). I think a second opinion is an excellent choice - I hope they're able to come up with some other options for you. The roller-coaster is certainly not fun! 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2016 at 6:46pm
Rx: I'm very sorry and hope your oncologists can stabilize your situation, your oncologist is telling you "like it is' , my wife's is also, I don't think radiation is going to help here, but "I'm no doctor", in fact, radiation causes mutations, in my opinion...
My wife has an aggressive cancer, and she has a PET at the end of the month, if I get any info from her team as far as... additional drug therapy, I will pass it along...

let us know how we can help....
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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praying2016 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote praying2016 Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2016 at 4:42pm
Rx. so you did achieve PCr? I guess this not a surrogate for non recurrence.
may I ask about your age and your KI67? 

stay strong and fight off this thing!! all my prayers with you. 
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 12 2016 at 4:58pm
Rxmaso2,

I'm so sorry you are dealing with this news.  I agree with some of the other suggestions to look into a second opinion and possibly clinical trials.  Are you able to travel for a second opinion?  Look into an NCCN cancer center.  The Gemzar/Carbo may work and get you to NED (no evidence of disease), but it's always a good idea to have Plan B ready. 

Don't give up hope.  There are several ladies with Stage 4 TNBC that have responded to treatment.  


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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