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Old 01-11-2011, 12:08 PM   #4
AlaskaAngel
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Join Date: Sep 2005
Location: Alaska
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Re: Encouragement needed to decide whether to join a vaccine trial

10 cents from far-flung Alaska....

Treatment as a relatively rural Alaskan gave me some perspective about this, so I'll pass it on.

For the most part, when talking about urban vs rural, one tends to think in terms of rural people having to drive long distances to get there, and stay in a motel during each active testing portion of a trial.

For Alaskans it is often more of a question of having to do all of that by boat or plane just to get standard treatment.

After treatment, because my cancer center was in Seattle, I took the opportunity to investigate trials offered there, and eventually persuaded a trial coordinator to include me in one that I have been doing for 7 years now. As part of that trial I have an annual transvaginal ultrasound done only on-site in Seattle, plus blood draws periodically both during that one visit each year as well as in Alaska and sent on dry ice to Seattle. So... It sometimes can be done, although it is not easy or simple. I pay for all draws done in Alaska.

Other trials ARE more difficult. I participated in one offered by the Mayo clinic by traveling on my own dime to their facilities in the Lower 48 for the initial verification that I met their criteria plus a physical, and then did the blood draws in Alaska.

What it takes is determination and personal dependability to follow through, as well as some exceptional cooperation from trial coordinators, plus the participation and verification by one's local PCP, and it only happens for trials where the on-site function is not essential throughout the trial for site-standardized scientific authentification purposes.

A.A.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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