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Old 03-03-2013, 04:07 PM   #1
JillaryJill
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Join Date: Aug 2011
Posts: 271
Seeking advice from Vaccine trial participants

I am considering one of 2 vaccine trials.
University of Washington, Arm 5, Her2 peptide vaccine plus 2000mcg Ampligen
and the Mayo Clinic MC1136, Phase 1 trial Multi-epitope Her-2/neu Peptide Vaccine with GM-CSF. I have read all the paperwork on both.
Here is what scares me. Both say if you participate and there are problems with your health caused by the trial, your insurance might not cover these problems. Wondering how you other ladies that participated in Vaccine trials feel about this? Did you contact your insurance company and tell them you were participating in a trial?

For the Mayo Clinic trial, the Vaccine includes, GM-CSF. They conduct echo's since this can effect the heart, and also they list as rare side effects Leukemia. I talked to MD Anderson and many of the trials that use GM-CSF only accept patients that have been done with Herceptin in 6 months for less. I do not qualify for any of those. Has anyone been part of a trial that used GM-CSF? If so what was your experience. I live in Illinois so Mayo is close to my home, although I have the resources to participate in the Seattle trial as well.

As you can see from my signature...I was Stage IIIc and I am 2 years and 4 months out. I really would like to be part of the advance of vaccines for all the women in my life that I love...but reading the fine print on a trial is scary. I have great overall health and a strong heart.

Can someone shed some light on your decision making process to partipate in a trial.
__________________
DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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