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Old 10-11-2008, 06:04 AM   #1
dhealey
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Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
Janelle, I do not have any bone pain from the vaccine. I do feel tired for about 24 hours after the injection, sometimes with a slight headache about 2 hours after getting the injection, but this goes away by the next day. I have so far found this to be very tolerable. Best of luck! Debbie
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 10-19-2008, 03:10 PM   #2
Janelle
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Join Date: Nov 2007
Location: Brentwood, CA
Posts: 76
I had my first injectin on Wednesday, Oct. 15.

I experienced fluid retention in my ankles within 2 hours of receiving my first injection. Apparently this is a somewhat uncommon side effect but they have noticed it in 10% of the patients so far. I was also very tired for the next 24 hours and I still feel more fatigued than usual today.

I had very minor swelling at the injection site but I was told this could get worse after subsequent injections. Of course, I may be getting the placebo arm too....
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Janelle
Diagnosed October 2006 at age 37 wtih grade 3 IDC and high grade DCIS
Stage 1c triple positive, no node involvement but
vascular invasion
multifocal disease
Lumpectomy November, 2006
A/C every 3 weeks (started Jan., 2007 and finished March 2007); followed weekly Taxol (finished June 2007) concurrent with Herceptin (finished March 2008);
Bilateral Mast with immediate recon in Sept 2007; finished recon Dec. 2007
Started 5 years of tamoxifen Nov. 2007; started peptide vaccine clinical trial at MD Anderson October 2008 and finished active part of trial in April 2009 (monthly injections of AE37 peptitde (HLA type specific) with GM-CSF or GM-CSF alone depending on if I was in experimental or control group); started Zometa infusions June 25, 2009- 4mg every 6 months for 3 years (taking it "off-label" to try to prevent mets)
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Old 01-24-2009, 01:53 PM   #3
Carolina59
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Join Date: Jan 2009
Posts: 3
I am currently trying to get all the paperwork, records, etc. together to enter this trial before my window closes on 2/15/09.

Does anyone know how many patients are enrolled so far at Wake Forrest?

Thanks,
Carolina
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Old 01-24-2009, 02:36 PM   #4
Janelle
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Join Date: Nov 2007
Location: Brentwood, CA
Posts: 76
Where do you live? Fewer than 10 people are enrolled at MD Anderson right now. I can try to find out from MD Anderson if they have the enrollment stats for Wake Forrest.
__________________
Janelle
Diagnosed October 2006 at age 37 wtih grade 3 IDC and high grade DCIS
Stage 1c triple positive, no node involvement but
vascular invasion
multifocal disease
Lumpectomy November, 2006
A/C every 3 weeks (started Jan., 2007 and finished March 2007); followed weekly Taxol (finished June 2007) concurrent with Herceptin (finished March 2008);
Bilateral Mast with immediate recon in Sept 2007; finished recon Dec. 2007
Started 5 years of tamoxifen Nov. 2007; started peptide vaccine clinical trial at MD Anderson October 2008 and finished active part of trial in April 2009 (monthly injections of AE37 peptitde (HLA type specific) with GM-CSF or GM-CSF alone depending on if I was in experimental or control group); started Zometa infusions June 25, 2009- 4mg every 6 months for 3 years (taking it "off-label" to try to prevent mets)
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Old 01-24-2009, 06:00 PM   #5
Carolina59
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Join Date: Jan 2009
Posts: 3
Thanks, Janelle. I am in NYC, but I have a cousin in Winston-Salem, and I grew up in Charlotte, so I think that would be the easiest place for me to go. I also have a 4 y.o. dd, so I have to figure that in to the traveling logistics, esp. since I was told I would have to spend a week there for the screening process.

I am still interested in how many are enrolled at Wake Forrest--in July someone posted that there were only 2 people enrolled. I'm sure they must have more now. I forgot to ask the nurse coordinator.
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