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Topic: Members Share Their Clinical Trial Experience

Forum: Clinical Trials, Research News, Podcasts, and Study Results —

Share your research articles, interpretations and experiences here. Let us know how these studies affect you and your decisions.

Posted on: Aug 14, 2015 11:27AM

Moderators wrote:

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!

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 3, 2015 10:01AM mardance wrote:

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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Nov 4, 2015 10:27AM Moderators wrote:

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

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Feb 18, 2016 11:26AM bluedog wrote:

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?

Lisa -- 56 at diagnosis. Getting Herceptin as part of a clinical trial. Dx 3/2015, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Chemotherapy 4/5/2015 AC + T (Taxol) Surgery 9/17/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/19/2015 Targeted Therapy 1/14/2016 Herceptin (trastuzumab)
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Feb 18, 2016 11:37AM Hopeful82014 wrote:

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!
Dx IDC
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Feb 18, 2016 11:40AM - edited Feb 18, 2016 12:46PM by SpecialK

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!

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Feb 18, 2016 11:59AM Hopeful82014 wrote:

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.
Dx IDC
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Feb 18, 2016 05:37PM bluedog wrote:

Thank you both very much. I'll talk to the coordinator.
Lisa -- 56 at diagnosis. Getting Herceptin as part of a clinical trial. Dx 3/2015, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Chemotherapy 4/5/2015 AC + T (Taxol) Surgery 9/17/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/19/2015 Targeted Therapy 1/14/2016 Herceptin (trastuzumab)

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