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03-01-2010, 05:03 PM
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#1
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Are there any HLA neg. folks in vaccine trials out there?
Well, I learned today that I do not qualify for the Mayo vaccine trial. You have to be positive to the HLA-A2 factor. I was very disappointed when they called. For some reason, I am having a hard time locating trials. If you know of any, please let me know. I have a short window to get into one. Thank you so much for your interest and caring attitudes.
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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03-01-2010, 06:49 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Are there any HLA neg. folks in vaccine trials out there?
Hi Sandra -
Yes, there are a lot of us HLA-A2 negative. I also tried to qualify for a vaccine trial here in Seattle, but had the same answer you got.
My HLA-A number was 26 or something close. I was told that it was a low percentage of people who are actually A2.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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03-02-2010, 07:13 AM
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#3
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Re: Are there any HLA neg. folks in vaccine trials out there?
Yes, Stephanie, my oncologist had told me that 45% of the population is positive. After all, right now I an NED, and there are advances being made almost daily. Thank you for your response.
Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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03-02-2010, 08:59 AM
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#4
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Re: Are there any HLA neg. folks in vaccine trials out there?
A VERY special "thank you" goes out to 'lizabeth! From your posting of the Walter Reed trial. I was able to get in touch with the nurse at Wake Forrest, the nearest site to me. After she checked with Washington to see if having taken lapatinib would exclude me, I got good news this morning. I can get in this trial! I have to get my oncologist's OK and then I will proceed (I only have until May.) As 'lizabeth knows, they have a vaccine they are giving to negetive folks. Of course, I may just get the GM-CSF, but I feel something is better than nothing. Thank you again 'lizabeth!!!
Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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03-03-2010, 06:59 AM
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#5
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Are there any HLA neg. folks in vaccine trials out there?
Let us know what happens about the trial.
Amelia
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03-03-2010, 07:39 AM
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#6
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Re: Are there any HLA neg. folks in vaccine trials out there?
Thank you Amelia. I did talk with my oncologist yesterday afternoon and he felt it was "reasonable" (to quote him.) I have to go back down to Mayo today for my plastic surgeon to check on this reconstruction so I will leave a copy of the email I received from the nurse in NC this morning detailing the records and releases she needs. In the email, she stated that I will then be randomized and she will contact me when I need to come up for a week to get everything going.
I know that you flew all the way to Washington to get yours. Since I have relatives in the Winston-Salem area, I decided to try this site first. It is about a nine hour drive from south GA, but there is one airline that flies out of Tallahassee (60 miles) nonstop to Charlotte. That will be the way I make most of the required trips I think.
Thank you again for your support.
Sandra
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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03-03-2010, 09:36 AM
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#7
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Are there any HLA neg. folks in vaccine trials out there?
Sandra,
I've been busy studying for my work and missed the big news. I am so excited for you. I know exactly how you feel getting into the study.
I'm even more excited that the study was approved for booster shots.
But you must have misread the information, because even in the control arm you should be exposed to the AE37 vaccine. It is part of the first set of injections to see if your immune system recognized this peptide. Then you will be randomized to either the Leukine arm or the AE37/Leukine arm. After your initial series of 6 injections you will once again be injected with a small sample of AE37 to measure your immune system response to the peptide. Boosters will be from which arm we have been randomized to.
All I can say is Yippee! Thank you for enrolling and joining me on my quest to find more options beyond reoccurence & repeated chemos.
I wish you good health,
'lizbeth
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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03-03-2010, 07:11 PM
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#8
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Senior Member
Join Date: Aug 2009
Location: Moultrie, GA
Posts: 431
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Re: Are there any HLA neg. folks in vaccine trials out there?
Yes, 'lizabeth, if everything goes as it should, I will be joining you. I am so excited! I thank you so much for sharing this with me. I did receive an email from the coordinator this morning and she was telling me that I would need to be up there for 5 days the first time and I would receive DTH#1 on Monday and an innoculation on Wed. I did think, "Well, an innoculation means vaccine!" Now, with your explanation, that makes sense. I have not received any information on the trial except what is on that web page that you posted. I just felt that at least I would get something else. THANKS, you have made my day!!
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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