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Hope, I was in the UW/Seattle Her2 vaccine trial. I'm sorry to hear you're struggling so with those mets and your decision on your next course of action. I think you're going through the right process: get as much info as you can about options, let everything kick around in your mind for awhile, and then gradually you'll know what course to take.
The vaccine trial I was in was Phase I-II, and I was able to stay on Herceptin while I got the vaccine, which eased my mind. I would have been very nervous to go off Herceptin to do the trial, and probably wouldn't have gone ahead if that were the case. But since I COULD continue Herceptin, I felt I had nothing to lose in getting the vaccine and it may well prove to help keep the cancer controlled. Also, it will help other people down the road.
I've had no complications so far; I have a MUGA coming up which will show if my heart function has decreased, which is one of the main unknowns about the vaccine in conjunction with Herceptin. This was the aspect which made me a bit nervous about this study, but I just kept up with my CoQ10, with the study doctor's ok, and kept my fingers crossed. We'll see how that went soon.
I had six vaccines, over a period of six months, and follow-up blood work at the 7th and 9th month, this being the 9th month. I was to have more blood work at the 12th month, which would finish up the main data collecting part of the trial, then I was to be followed annually with a questionaire filled out by my onc, but I HAVE had a recurrence confirmed last week to axilla lymph nodes, and have started chemo again. So technically, I'm out of the trial although when I contacted the study doctor to inform them of my status, she said they would still be keeping tabs on me and using my information in other ways, so we're staying in touch with them as it's possible there will be another trial I'll qualify for when done with this round of chemo.
It's felt that the vaccine may continue to "work" even with the addition of chemo. Time will tell.
If the Phase I part of the BMS etc. trial is completed, that means safety has been established, correct? So the Phase II trial will be to establish dose levels; if I understand the process correctly they will gradually escalate the doses? I'm sure the thought of possible side effects makes you nervous, but remember they'll be watching you very closely and you will be at one of the best cancer facilities in the nation.
Good luck with your decision,Hope. Let me know if you have any more questions.
<3,
Lolly
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