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Old 01-09-2011, 11:29 AM   #1
bejuce
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Join Date: May 2009
Posts: 510
Question Encouragement needed to decide whether to join a vaccine trial

Hi everyone,

I've been thinking of joining a vaccine trial for a while now that I've been off Herceptin since July. This trial here is currently recruiting patients at Berkeley, CA, and I'm pretty much almost all set to join it. I was hoping to do it at Stanford, but my oncologist has moved on to Genentech and the trial was discontinued there.

I'll have my first consultation at Alta Bates on the 18th, to sign the consent forms, get my labs done, be examined, and do a chest ray and echo. The next step is to perform an apheresis to I think extract some cells to be used in the engineering or analysis of the vaccine. One of the concerns I have is that the nurse told me over the phone that they'll have to use both my arms for this procedure, including my right arm under which I removed 13 lymph nodes. I still have my port in place hoping for exactly this - that I'd be able to use for a vaccine trial. Since I won't, sounds like it's time for me to get rid of it after all.

I'm strongly leaning towards joining this trial, but before I do so, I'd like to hear from those of you in vaccine trials elsewhere how you're dealing with their side effects and so on. The vaccine I'll be taking consists of a fixed monthly dose for a 6-month period - no major side effects have been reported.

My main concern with this is whether the vaccine won't backfire and instead of slowing tumor progression or prevent its recurrence, it'll actually stimulate its growth. Not sure if that's possible, so those of you (Lani?) that are much more versed in the biological sciences and understand it, can you please offer me your two cents? I'm basically looking for that extra pinch of courage to move forward and not look back and regret my decision.

Thank you in advance for your input and hope that 2011 will be a year of many successes and good news for all of us!

Marcia
__________________
ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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