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Old 01-26-2014, 02:44 PM   #1
JillaryJill
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Strange side effect from vaccine trial

I am wondering if any of you had this happen during the vaccine trial. My last vaccine was August of 2013. Since my diagnosis and treatment, I do not consume much alcohol. However, on occasion I will have some alcohol. About 2 months ago, we bought a case of wine for friends for Christmas. Trader Joe's only has this type of wine once per year. My husband kept a half case to have at the house. I had 2 half glasses of that wine (a red blend). In the middle of the night I woke up with 1/2 golf ball size welts on the arm where they administered the vaccines. There were 2 shots for each vaccine, and there were 2 welts where vaccines had previously been injected. Last night we had friends over and our husbands taught us how to play poker. I had one glass of white wine, a salad with Balsamic vinegar and a couple of low alcohol beers over the course of about 5 hours. Again, I woke up with these welts. I am going to Mayo on Friday for a blood test and echo for the trial and I will ask about this.
Do you think this means that the vaccine that is supposed to target over expression of Her2....recognizes that "little" amount of alcohol as something it needs to react to? Or do you think it is reacting the sulfites in the wine. Balsamic vinegar also has sulfites? The next day in both cases, the welts were gone.
Has anyone else had this experience with welts reappearing at the injection site after a drink of alcohol?
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
June, 2015, Finished the trial at Mayo Clinic. Feels good!
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Old 01-26-2014, 06:03 PM   #2
Margaret Eleanor
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Re: Strange side effect from vaccine trial

I am doing the Mayo vaccine trial in Rochester right now, three down, three to go. While I had at least one rum drink on vacation in the Caribbean last month, my prior injection sites did not swell. However, all injection sites swelled and started itching within an hour of getting the flu shot. The sites remained swollen and itchy for about two weeks. The research oncologist said she felt sure it was an immune system response. Please keep us posted on what your doctors say about the reaction.
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Old 01-26-2014, 06:42 PM   #3
europa
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Re: Strange side effect from vaccine trial

Oh I had that. I actually can't drink alcohol anymore. It has a horrible effect on me. My trial nurse told me to just stay away from alcohol until I am completely done with the trial, then wait a year. I don't drink much so it's not a big deal to not drink at all
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AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
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Starting Walter Reed Vaccine Trial 2/13
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02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
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1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
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Old 01-26-2014, 06:53 PM   #4
jacqueline1102
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Re: Strange side effect from vaccine trial

My treatment team has said to not drink any alcohol and they are adamant about it. The research discussing the link between breast cancer and alcohol is just too compelling for us to minimize it. That being said, I had two glasses of wine last night with a fabulous meal cooked at home with my fab husband.
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10/11-2/12 TCH for 6 rounds
3/12 Right MRM
5/12-7/12 33 Radiation treatments
8/1/12 Started Perjeta along with the Herceptin
10/12 Scans said NED for first time
5/15 UWSeattle Vaccine Trial 3 months
12/16 Scans still show NED. Herceptin and Perjeta continue indef.
8/17 Taken off Perjeta;staying on Herceptin. Still NEAD.
3/18 Still NEAD
8/19 Now on Subcutaneous Herceptin
10/21 Remain on Subcutaneous Herceptin (Hylecta)
11/21 CT showed possible lung mets. Was told to wait and see until scan
1/22 CT shows continued growth
03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer
04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant
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