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-   -   "Girls Club Meeting" in Seattle (https://her2support.org/vbulletin/showthread.php?t=20969)

mamacze 09-02-2005 08:09 PM

Hi All!
Dr. Devon Webster has asked those of us in the Seattle trial (and actually, check her comments below, maybe non triall folks can participate as well) to consider coming back and donate t cells for their research...I thought it would be nice if we all scheduled our trip on the same day; and perhaps we could get together for coffee; green tea, and just have fun!

PLEASE post your thoughts and let me know if you are interested!

It seems as if they can accommodate us...anyway; I asked Dr. D what exactly the "leukophoreses" entails and here is her reply:

"Regarding leukapheresis, here are the issues:

Right now the leukapheresis would be for research purposes only. We would ask you to consent to the procedure and we would pay you $150 for donating your cells. These cells would NOT be stored to use for T cell infusion later (because we don’t have the storage facilities, and we can only store them for a limited period of time and still be able to use them.) If you recurred and needed the T cell infusion, we would have to leukapherese you again. However, by taking your cells now, we can study your immune response now more extensively, try growing your T cells in different ways, and learn more about the best ways to grow T cells outside the body. This could be done at any time and we could try to arrange it so you girls could all meet up.

To have leukapheresis, you should have fairly normal blood counts. You need to be 30 days from any chemotherapy (not including Herceptin). You can’t be on steroids. You should be 30 days out from your last BIG blood draw from us.

Right now we can’t do the leukapheresis instead of the blood draw at month 7, but we can do it any time 30 days after that.

What it involves: Special nurses who are REALLY good at this stick a big needle in one arm or both arms. (It depends on whether you have had a lymph node dissection or not.) You sit in a nice big chair for about four hours watching movies and sipping juice and chatting while your blood comes out, spins around in a machine, your white blood cells are sucked off, and your blood is returned to you. At the end there is a bag (the size of a small IV bag) that is filled with white cells. We take the bag, thank you profusely, pay you, and do experiments and freeze the cells down for future experiments, etc.

Doreen will need to check on how many folks can be done at the same time. I’m not sure how many machines they have. You may have to stagger your appointments, but Doreen will try her best to make something work!

For anyone who is currently having a recurrence, ie brain met, we may want to actually put them on a T cell infusion protocol right now. Their cells WOULD be stored for potential use if they were eligible for the study and agreed to it. The leukpheresis procedure is the same, but it is done in a different place and with more testing beforehand. So anyone having active recurrence should call Doreen about that."

Looking forward to hearing from all of you angels!

Love Kim From CT


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