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Old 02-18-2013, 01:45 PM   #11
mamacze
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Join Date: Sep 2005
Location: Madison, Connecticut
Posts: 638
Re: Tumor Profiling Lab Tests

Thank you all for chiming in on my post and thank you Becky for putting a thumb tack on it.
I too am concerned for patients who have tumor profiling done and can do nothing with the results - ie, when we have no effective treatments for the mutations that are identified.
But (correct me if you think I have been duped, please!!), when I had the profile done;
a gene mutation was identified (PIK3CA G1049S); and the tumor profile report also then identified a promising med that has shown clinical benefit in clinical trial against that particularmutation. (in my case they identified Drugs Associated with Clinical Benefit against this mutation ie, Everolimus or other mTor inhibitors) They also listed relevant available clinical trials with a link on clinical trials.gov. At the moment I am still responding to Herceptin (the tumor they biopsied is what popped up during a Herceptin holiday). But I feel like I have Everolimus in my back pocket as a Plan B when I start to become resistant to Herceptin.
Also,they said this test was covered by my insurance.
My oncologist was intrigued. He said he would get another biopsy done when I do become resistant to Herceptin. I queried the company that did the profiling. They said they only report on mutations that have a corresponding drug associated with clinical benefit; otherwise the test is not helpful to patient or physician.
Do you think I was misled?
I would love to hear your opinions.
Love this Her2 board....
Kim (from CT)
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2022 On Herceptin and NED continues - WOOT WOOT!
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