what to do?

[michele u]

Ok, now i have a dilema. I am in the process of getting accepted to the vaccine trial in Seattle. It's taking along time to hear back. Anyway, in the mean time i've been on the internet.I've found a clinical trial at Roger Williams Medical center. I think it's in RI? They have trial that takes out the T-cells from your blood, then coat them with antibiodies and Herceptin, grow them where the make billions of T-cells then infuse them back in your body. It take 8 infusions. The vaccines try to stimulate your own body to make T-cells to fight the cancer. This way seems better because they are putting the T-cells and Herceptin and the antibodies to the cancer back in the body. The only stickler is that it's not free! The vaccine trials once you get there there is no charge. This other one could cost up to 28,000 dollars. Insurance companies i'm sure won't pay any on it. What do you all think about this? Joe, have you heard about this targeted T-cell protocol? Thanks any opinions!

[Lolly]

Michele, the protocol sounds interesting, but I just have a problem with them charging volunteers for an experimental treatment that may or may not prove to be beneficial; basically they're charging you to help them develop a therapy that they will possibly make money from down the road.
Even if they don't make money, you're taking the risk, so if the study isn't funded to the degree that enables them to provide the experimental treatment at no cost to volunteers, I would suspect the research behind the study protocol isn't thourough enough to entice backers.

I've been very impressed with the level of expertise at University of Washington, and they're attitude towards volunteers is one of utmost respect and gratitude that we are putting ourselves on the line to help further the research.

This is just my opinion, you must do what you feel most comfortable doing and what you feel is of greatest promise to you, but ask the Roger Williams Center some hard questions about their research backing up this protocol.

<3,
Lolly

[michele u]

Lolly,
That's what i was thinking too about the backing. If they have to charge, then they aren't getting the backing. How long did it take for you to find out you were excepted to Seattle? It's been 3 weeks, and i still don't have a answer!

[Lolly]

Michele, I think it was about a month before we heard back, and then I had to get repeat scans as there was a question about node, so that took another 2 months as I had to wait 6 weeks before we could re-scan, then a couple of weeks to get word back on acceptance...It's hard to wait, I know, but the process is very thourough...the guidelines are strict and they don't want to make any mistakes.

<3,
Lolly

[al from canada]

I would base my decision partly on past performance and results. I know the Seattle team has excellent results from past trials, I don't know about the other one....
I'd pay $28,000 for my life-saving therapy only if it was better than 50/50, It's a tough one. One thing I also know about Seattle, their patient care is second to none.
Good luck,
Al

[michele u]

And the other thing, in this certain trial with stage 3 women, there has only been 7 people enrolled. That's not very many at all compared to Seattle!

[mamacze]

Michelle,
I am sorry I missed this post...it is a bit overwhelming when reviewing clinical studies...I was interested in one in Texas, but again funding was an issue; I am glad I ultimately ended up in Seattle, as Al said, the care is second to none, Dr. Disis is incredible and they have a great track record of successes since 1991... but you are right in doing your own research and moving toward the one that seems best for you. I think I started contacting U of W in December and was accepted in Feb...but if you bring up all my posts you can tell. Good luck and hugs while you struggle through this.
Love Kim from CT