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mamacze · 01-07-2013, 02:46 PM

Hi Mike,
I am just sick at heart to hear how Barb is. You must feel like you are on a rickety roller coaster; full speed.
I feel compelled to suggest a couple of things that perhaps you have already tried.
One is to consider sending Barb's tissue to a lab like Precipio Diagnostics for a Tumor Profile.

http://www.precipiodx.com/physicians...profiling.html

This is a paragraph from their web site:
The Yale Tumor Profiling Lab is the most cutting edge tumor genotyping technology clinically available today. Offered exclusively by Precipio, the panels are tailored specifically to each tumor, resulting in a uniquely focused and targeted diagnosis. The report provides you with immediate insight into the nature of the mutation and delivers a strong basis for identifying the appropriate treatment plan for each of your patients.

No other panel has the following benefits which help optimize the patient’s treatment:

Revelance - You receive a report that presents ONLY clinically-relevant information, focusing solely on ¹69 actionable mutations

I had this done myself. The outcome? A mutation was identified along with a drug and clinical trials that target that particular mutation. I am happy to share contact info and a sample report if you are interested.

The other thought I had is that Dana Farber has a breast oncologist that specializes in Young Survivors. Her name is Dr. Ann Partridge, MD
Founder and Director, Program for Young Women with Breast Cancer
Director, Adult Survivorship Program
Certainly Barb would be a Candidate for a second opinion with Ann.
But I think my first priority would be to identify the exact mutation Barb has so, if possible, the oncologists can target it with the appropriate treatment.
Again, I am happy to provide any info via pm if you would like.
In any case, may you both find and savor a few moments of peace while you continue along your path together..
Hugs,
Kim from CT

01-07-2013, 02:46 PM	#17
mamacze Senior Member Join Date: Sep 2005 Location: Madison, Connecticut Posts: 638	Re: Update on Barb 12/28 Hi Mike, I am just sick at heart to hear how Barb is. You must feel like you are on a rickety roller coaster; full speed. I feel compelled to suggest a couple of things that perhaps you have already tried. One is to consider sending Barb's tissue to a lab like Precipio Diagnostics for a Tumor Profile. http://www.precipiodx.com/physicians...profiling.html This is a paragraph from their web site: The Yale Tumor Profiling Lab is the most cutting edge tumor genotyping technology clinically available today. Offered exclusively by Precipio, the panels are tailored specifically to each tumor, resulting in a uniquely focused and targeted diagnosis. The report provides you with immediate insight into the nature of the mutation and delivers a strong basis for identifying the appropriate treatment plan for each of your patients. No other panel has the following benefits which help optimize the patient’s treatment: Revelance - You receive a report that presents ONLY clinically-relevant information, focusing solely on ¹69 actionable mutations I had this done myself. The outcome? A mutation was identified along with a drug and clinical trials that target that particular mutation. I am happy to share contact info and a sample report if you are interested. The other thought I had is that Dana Farber has a breast oncologist that specializes in Young Survivors. Her name is Dr. Ann Partridge, MD Founder and Director, Program for Young Women with Breast Cancer Director, Adult Survivorship Program Certainly Barb would be a Candidate for a second opinion with Ann. But I think my first priority would be to identify the exact mutation Barb has so, if possible, the oncologists can target it with the appropriate treatment. Again, I am happy to provide any info via pm if you would like. In any case, may you both find and savor a few moments of peace while you continue along your path together.. Hugs, 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!