Her2umor study

[SoCalGal]

In thinking we might need an additional site in order to manage costs, logistics, and participants, and to keep separate the H2S - Her2umor Study, I have registered "Her2Hope.org" for our use. Down the road it might be a re-direct from this board, or not needed at all. Am not too sure about storage on our server, etc. BUT, it's a good name, and just in case we need it, moving forward, we have it. I think it's worth the $43.00 bucks.

Regards,
Flori

[Joe]

Flori,
We have a dedicated server with tons of storage. I understand that I can host up to 50 websites without any degradation.

Regards
Joe

[Andrea Barnett Budin]

HER2umor STUDY. Brilliant name. 2umor is suddenly intriguing to me. It makes me want to smile. Well done, Flori. Especially midst your new chemo and battle for Life! Thank you. What a wonderful gift.

I am a word person. My OCD likes to *label* things before I dig in. You have satisfied that need. An excellent and necessary first step!

I just read on this site that my '95 and '98 tissue samples may well no longer exist. *They* (institutions?) hold them for 5 yrs.

Shouldn't I have been given a heads up, in case I chose to preserve that valuable bit of me, like they do w/sperm and eggs and such??

Andi

[Lani]

I asked a gentleman from a tumor banking service for researchers who exhibited at SABCS how long hospitals keep tumors. He said it depended on each hospitals's policy and that he worked at Washington University in St. Louis where samples are kept way past 30 or 40 years (at least at Barnes vs Jewish Hospital)

I expect to hear a lot of pathology department's phones ringing just about now!

[Andrea Barnett Budin]

Thanks Lani. 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.

LANI,

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, 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. And I had had too much Adriamycin to be accepted in the trial being held ONLY at that time at 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.

She promised to isolate a piece and personally pack it in ice and drop it off at the Fed Ex office when she left work -- to be overnighted to Calif.

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.

I await specific instruction. I am happy to spend the time tracking down the sample, if it is still retained. 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/ev 3 wk bld draws at my onc's office -- w/a packet as some have described, having specific instructions exactly what to draw and where to send it and how.

I am relieved, Lani, to hear that not all have a 5 yr disposal rule. That would be unfortunate. Thanks for everything!!!!!

Andi

[Lani]

is hopefully to get each and everyone of you to be certain your tumor specimen is not discarded.

Each holds a little piece of the puzzle to understanding and hopefully conquering this disease.

Also, please let your friends and relatives know of this problem (no matter what their diagnosis was) so valuable information does not end up in smoke in the incinerator.

I am so glad you found your sample. Now I will try to find out from the man at Wash U pathology department how each of you who takes your sample home (if that is the only way they will not discard it) should store it for safekeeping.

As I said, mining for information is my forte ...organizing, paperwork, and
"smoozing/marketing" and fundraising are not. Let's see which members of this board have those capabilities and see if we can do more...but, if not, at least we saved many tumors from the trash heep/incinerator!

[StephN]

Hi -
I picked up my tumor just a little over a year ago. We had a thread on this which Sheila started.
I had to sign a waiver sort of legal paper and I only got my BLOCKS not the slides. It is the LAB not the hospital that had my specimans. They will keep the slides for up to 10 years.

They are in little styrofoam packs and I have those two packs in a metal box in a closet in the lower level of my home. I was advised by the lab to keep them cool, dry and undisturbed. All of those they are.

I had to pester the hospital to get them to track down my specimans. It took about three persistent calls and saying that I was stage IV and needed some tumor for further testing.

Hope this helps.