Patient-centered HER2 bc project

[Andrea Barnett Budin]

Thanks Lolly! I'm just moving this post from today over here, as we are on the same subject. My '98 tissue was at a hospital on Long Island. A piece was sent to Calif for HER2 testing at that time. I am assuming it is still there.

Do you know -- does one have their onc ascertain the sample? Would that be more promising than me as the patient calling?

I know at first the hosp had *lost* it and after multiple calls from my Long Island onc -- and from me -- to no avail, I went in person to the pathology dept and spoke eye to eye w/a lovely young woman who kept going in the back and looking and looking and finally was successful and located it, certain it was there SOMEWHERE. My presence created a definitive desire to find the darn thing. (This was Aug '98 when Herceptin was still in clinical trials, and I was hoping to be eligible IF I was in fact Her2+.) As it was, H was fast-tracked 9/28/98 for all to have access met bcers. And I had had too much Adriamycin to be accepted in the trial being held ONLY at UCLA, Sloan Kettering in NYC and at my onc's office in Boca. I was living 6 mnths in Fla and 6 mnths on Long Island at the time.

This lovely lady understood the urgency of the matter (I was waiting to begin my protocol w/bc spreading fast. She promised to isolate a piece of my sample and *personally* pack it in ice and drop it off at the Fed Ex office when she left work -- to be overnighted to Calif (only place testing for HER2 then).

So, I suppose it is rather pointless to check up on my precious tissue without having info as to where it should be sent. I am assuming there are forms that can be faxed and signed and refaxed to cover the legalities w/the hosp should they still retain my tissue.

I await specific instruction. I am happy to spend the time tracking down the sample as best I can. I believe the cause is supreme! (The '95 sample came from a Westchester lab, which I have the name of in my voluminous files from '95 to present. In desperation, I could try to ascertain something from them, as a backup plan.)

Any blood needed could be gotten w/my ongoing ev 3 wk bld draws at my onc's office -- w/a packet as some have described, having specific instructions detailing exactly what to draw and where to send it and how.

I am relieved to hear that not all have a 5 yr disposal rule. That would be unfortunate. Thanks for everything, Lani in trying to pull this off this great coup!!!!!

Andi

To restate Lolly's question -- CAN WE STORE OUR PATHOLOGY SLIDES AT HOME?? Anyone????
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