Members Share Their Clinical Trial Experience

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Moderators
Moderators Member Posts: 25,912
edited February 2016 in Clinical Trials, Research News, Podcasts, and Study Results

Check out our latest Member Stories feature: Members Share Their Clinical Trial Experience.

Thank you to all who submitted their stories! If you'd like to share YOUR story, please send a PM to the Mods!

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  • mardance
    mardance Member Posts: 2
    edited November 2015

    How did you decide if you wanted to do a trial? My onco wants me to keep an open mind, but am concerned it will hold e back from moving on since I am starts RADS this week and will be done holiday time and the new year I am looking forward to recon, etc.

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2015

    Hi mardance,

    You might find some helpful information on the main Breastcancer.org site's Clinical Trials section, including info on:

    And more...

    We hope this helps!

    --The Mods

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  • bluedog
    bluedog Member Posts: 212
    edited February 2016

    Hi, all. As it says in my signature, I'm in the Herceptin/NeuVax trial. I've had two Herceptin infusions and yesterday had my first pre-vaccine injection. The nurse had warned me that it would be painful, and boy was it. It's not the needle stick that's the problem, but rather that the fluid really burns as it's injected under the skin (into the thigh). And, it continues burning for several minutes. Next week I'm supposed to get four injections, one after another. Then, that will be repeated every three weeks for many months. Anyone in this trial or getting these injections? Any suggestions for reducing the pain?

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2016
    Blue dog, I am in the same trial. I have 2 suggestions to deal with that issue:

    Ask your nurse to use a numbing spray (and be sure she uses enough!) OR

    Ask for an rx for Embla cream, which will achieve the same effect.

    Either one should make it as close to painless as possible.

    I've been on the trial since early November.

    Good luck!
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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2016

    I was in the Her2+ GP2/AE37 vaccine trial and received two injections every three weeks for six months, followed by boosters for the following two years.  Part of what was measured in my trial was the localized skin response so I was not allowed to take any pain meds or do anything topically to reduce or change the reaction until after the coordinator had marked and checked it 48 hours later.  My trial also included GM-CSF, as does Neuvax, so you might check with your coordinator to determine any mediation of discomfort during the trial. Good luck!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2016
    Absolutely check with your trial coordinator - mine was the one who suggested both the spray and Embla, from the beginning.

    It's extremely important to check first with your coordinator regarding anything you might take after the drugs are given, whether it's to deal with itching, redness or any other symptoms. Some very common OTC remedies can interfere. same goes for adding any supplements or new rx.
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  • bluedog
    bluedog Member Posts: 212
    edited February 2016
    Thank you both very much. I'll talk to the coordinator.
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