Any Triple Neg Mets to the Lungs out there?

anamary1

 So, I'm new here, Hi everyone

My first post here on this particular board! I was originally diagnosed in Nov 08 with carcinosarcoma in the breast. Had Mod rad mast, 8 act's, 7 weeks of rads..... pet ct two weeks ago showed activity in the lungs. Two biopsies later, my pathology came back. Somehow they still didn't get enough tissue for all of the tests. I guess that is a good sign because it so small they can't get much of it. 9 tumors in my mastectomy side, two in the other with 1 large +node. The sarcoma aspect of the tumor has been ruled out. Now it is a poorly differentiated carcinoma. It is now considered a Triple Negative Breast Cancer mets to the lungs. They were not able to test for the HER2 receptor because of the lack of tissue but the Doc believes strongly it would be negative.   The Doc gave me a few different options including a clinical trial in Birmingham (its all over the country but that's the closest.) 4 hour drive... If excepted, depending on the drug plan I would be put on, it would be a twice a week trip to B'Hama week or once a week. This trial includes a new drug that is in stage III testing called a PARP inhibitor. It shows a lot of promise when combined with gemzar and carboplaitnum chemotherapy. But it is not recruiting yet!  If we start my treatment with gem/carbo now, it will disqualify me for the trial. I've also got my call into Sloan Kettering in NYC to see when I would get an appointment. I could start on the chemo plan that my doc would put me on asap but if I want to go to NY or B'Ham, he said I shouldn't go on any chemo just yet because they kinda frown on that. So, I have to wait and see when I get into Sloan or the B'ham trial, neither one will happen overnight. So more waiting.....
In the mean time I have requested a bone scan which my doc was not in agreement with but I told him I wasn't having any stones unturned this time. I also want another biopsy which he also disagreed on, this one requires taking out a section of my lung with tumor. I want more information about my tumor type. I'm just not at peace with the information we have right now and to me that is a sign that more testing has to be done. So, we wait, some more...

Anyone else under these circumstances and if so, what treatments have you had, how has it turned out and what would you do differently if you knew what you know now?

Ana

Frenchie

God bless you darlin. There are many, many TN ladies who have fought and beaten lung mets, so hold that head very high.

My wife was also diagnosed in Nov 08.  She has mastectomy ACT and rads like yourself + there was a positive lymph node.  Guess what, she's developed a cough which we think might be lung trouble - so in your boat Ana.

Will keep you posted.

James

 p.s.  Saw a top Onc in London last month.  He is VERY excited about the PARP trial.......