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03-05-2011, 10:17 PM
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#1
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Senior Member
Join Date: Nov 2009
Posts: 65
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Johns Hopkins Her2 Vaccine Trial
Hi all,
I just got accepted into the Johns Hopkins Her2 vaccine trial. Is anyone else out there in this trial? I met at one woman from California who is participating -- I am very lucky to live in the DC area and be so close to JH, where I get my treatment. So far I had my scans (all clear!!!), and peptides (which stung like crazy); first vacccines are on 3-14. I'm cross referencing this in the Her2 board as well.
Estelle
__________________
Estelle
DX 1/09
two tumors; .7 cm and 1.0 cm, same duct
lumpectomy 2/09
10 positive nodes; scans show no further metastisis, Stage IIIc
AC completed 5/09
Tykerb/Taxol (trial) 6/09, terminated from trial (due to bad reaction to Tykerb) 8/09; switched to Herceptin/Taxol
Taxol finished 10/09
Bilateral mastectomy
Radiation 11/09 to 1/10
Herceptin finished 7/10
NED
Start Vaccine Trial at Hopkins 2/11
Finished Vaccine Trial 11/11
Continue NED
Port Out 11/11
4 YEARS NED 2/12
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03-06-2011, 09:00 AM
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#2
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,049
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Re: Johns Hopkins Her2 Vaccine Trial
Congratulations! Estelle. Good luck to you and please keep us updated.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
N ICU 4.4 lb
Erythema Nodosum 85
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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03-08-2011, 09:58 AM
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#3
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Senior Member
Join Date: Jan 2011
Posts: 27
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Re: Johns Hopkins Her2 Vaccine Trial
What stage is this for. Good luck.
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03-09-2011, 10:31 AM
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#4
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Senior Member
Join Date: Jan 2011
Posts: 27
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Re: Johns Hopkins Her2 Vaccine Trial
I asked my doctor and she said it was stage 4 only. Sounds good does it?
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03-18-2011, 05:12 AM
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#5
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Senior Member
Join Date: Nov 2009
Posts: 65
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Re: Johns Hopkins Her2 Vaccine Trial
Completed my first round of vaccines. Burned like you know what but ok now.
feonad,
the study I am in is run by Dr. Leisha Emens at Johns Hopkins. She has two studies and recently added the her2 specific including stage III like me. I also think the University of Washington study has a stage III arm. If you are interested in pursuing a vaccine trial, keep looking -- there are several Stage III vaccine trials out there. A good source is clinicaltrials.gov. The information they provide lists the inclusion criteria. Get the information and take it to your dr. Good Luck.
__________________
Estelle
DX 1/09
two tumors; .7 cm and 1.0 cm, same duct
lumpectomy 2/09
10 positive nodes; scans show no further metastisis, Stage IIIc
AC completed 5/09
Tykerb/Taxol (trial) 6/09, terminated from trial (due to bad reaction to Tykerb) 8/09; switched to Herceptin/Taxol
Taxol finished 10/09
Bilateral mastectomy
Radiation 11/09 to 1/10
Herceptin finished 7/10
NED
Start Vaccine Trial at Hopkins 2/11
Finished Vaccine Trial 11/11
Continue NED
Port Out 11/11
4 YEARS NED 2/12
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05-22-2011, 12:32 PM
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#6
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,049
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Re: Johns Hopkins Her2 Vaccine Trial
Any update?
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
N ICU 4.4 lb
Erythema Nodosum 85
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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05-22-2011, 08:28 PM
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#7
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Senior Member
Join Date: Nov 2009
Posts: 65
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Re: Johns Hopkins Her2 Vaccine Trial
Thanks for asking Jackie. All is going very well. I have completed two cycles and am beginning my third cycle tomorrow. Then I am off for 5 months (except Herceptin every three weeks), then a booster round. So far I am tolerating it very well; all my bloodwork is looking really good. So I am feeling really good about the trial.
Estelle
__________________
Estelle
DX 1/09
two tumors; .7 cm and 1.0 cm, same duct
lumpectomy 2/09
10 positive nodes; scans show no further metastisis, Stage IIIc
AC completed 5/09
Tykerb/Taxol (trial) 6/09, terminated from trial (due to bad reaction to Tykerb) 8/09; switched to Herceptin/Taxol
Taxol finished 10/09
Bilateral mastectomy
Radiation 11/09 to 1/10
Herceptin finished 7/10
NED
Start Vaccine Trial at Hopkins 2/11
Finished Vaccine Trial 11/11
Continue NED
Port Out 11/11
4 YEARS NED 2/12
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05-26-2011, 10:07 AM
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#8
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,484
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Re: Johns Hopkins Her2 Vaccine Trial
Glad to hear you are doing well.
Amelia
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12-05-2011, 04:22 AM
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#9
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Member
Join Date: Jan 2011
Posts: 13
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Re: Johns Hopkins Her2 Vaccine Trial
How are you doing after trial? I am thinking about doing it but concerned about time commitment. I would have to fly there, spoke to Dr. Emens today about it.
__________________
38 y..o. mom to 5 year old twins girls and 3 year old son
Dx- 12/6/10- stage IV to bone
Taxol/Herceptin/Zometa
CT scans and bone scan- STABLE 4/19/11, 6/12/11, 10/4/11
Stopped taxol 9/29/11
Continue herceptin,zometa
John Hopkins vaccine trial 4/12-11-12
CT scans and bone scan- NED 4/12, 7/12
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12-05-2011, 09:52 AM
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#10
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Member
Join Date: Nov 2011
Location: Pittsfield, Maine
Posts: 11
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Re: Johns Hopkins Her2 Vaccine Trial
Hi, glad to hear you are doing well on the trial! I would love to do a trial of some sort myself.
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12-08-2011, 07:48 AM
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#11
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Member
Join Date: Nov 2011
Location: Pittsfield, Maine
Posts: 11
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Re: Johns Hopkins Her2 Vaccine Trial
How can I get on this trial?
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12-13-2011, 07:54 PM
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#12
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Senior Member
Join Date: Sep 2010
Location: New hampshire
Posts: 36
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Re: Johns Hopkins Her2 Vaccine Trial
Do you have to be NED to qualify for this trial? What is the name of the trial, then we could look it up to scan for the details. I am so happy to hear that you are doing so well!
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01-06-2012, 03:35 AM
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#13
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Member
Join Date: Jan 2011
Posts: 13
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Re: Johns Hopkins Her2 Vaccine Trial
http://clinicaltrials.gov/ct2/show/N...m=Emens&rank=5
This is the link to the trial. You do have to be NED. I have my first consultation in 2weeks.
__________________
38 y..o. mom to 5 year old twins girls and 3 year old son
Dx- 12/6/10- stage IV to bone
Taxol/Herceptin/Zometa
CT scans and bone scan- STABLE 4/19/11, 6/12/11, 10/4/11
Stopped taxol 9/29/11
Continue herceptin,zometa
John Hopkins vaccine trial 4/12-11-12
CT scans and bone scan- NED 4/12, 7/12
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01-06-2012, 04:57 AM
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#14
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Senior Member
Join Date: Apr 2008
Posts: 1,272
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Re: Johns Hopkins Her2 Vaccine Trial
Estelle,
Glad to hear your news and that you are doing well on the trial!
Best,
Karen Z
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01-06-2012, 11:07 AM
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#15
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Senior Member
Join Date: Nov 2009
Posts: 65
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Re: Johns Hopkins Her2 Vaccine Trial
Thanks, Karen. I haven't posted here in a while -- I am all done with the trial -- finished in November. did very well on it. Now I am in waiting stage -- no active treatment a little scary, but I know I have hit it with everything available. I have my post trial 3-month check up next week!
JK -- Good luck to you with the trial. You will find the crew all very professional and very, very nice.
__________________
Estelle
DX 1/09
two tumors; .7 cm and 1.0 cm, same duct
lumpectomy 2/09
10 positive nodes; scans show no further metastisis, Stage IIIc
AC completed 5/09
Tykerb/Taxol (trial) 6/09, terminated from trial (due to bad reaction to Tykerb) 8/09; switched to Herceptin/Taxol
Taxol finished 10/09
Bilateral mastectomy
Radiation 11/09 to 1/10
Herceptin finished 7/10
NED
Start Vaccine Trial at Hopkins 2/11
Finished Vaccine Trial 11/11
Continue NED
Port Out 11/11
4 YEARS NED 2/12
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01-09-2012, 04:20 PM
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#16
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Senior Member
Join Date: May 2006
Location: California
Posts: 490
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Hi from Adriana
Hi Estella,
Congratulations on finishing the vaccine trial. You are so fortunate to have participate and had no complications whatsoever. Stay in touch, please.
Love,
Adriana
P.S. I will see my doctor tomorrow, no longer on the tdm1 trial. I will post as soon as we make a decision as to "what's next"
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to Herceptin
Xeloda- did not work
2007-May - Back on Navelbine+Herceptin
2008-Feb-Mar -15 Ses Rad to Rt. Lung
Cont Herceptin.
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discont trmt due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue.CA2729 Normal.
2013 April Herceptin-Perjeta-Taxotere
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01-12-2012, 04:27 PM
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#17
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Senior Member
Join Date: Aug 2011
Posts: 107
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Re: Johns Hopkins Her2 Vaccine Trial
Estelle,
I called John Hopkins today and talked with Maureen and the Dr. I live in Chicago so it would be a large commitment for me to participate in this trial. Your diagnosis is similar to mine with alot of nodes involved. Just out of curiosity, after your initial treatments, what did your onc say was the percentage of recurrance they see with your diagnosis. Why did you decide to do the trial? Could you work during this trial?
__________________
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, still on Herceptin
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
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01-24-2012, 01:23 AM
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#18
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,049
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Re: Johns Hopkins Her2 Vaccine Trial
Jkdowl,
How did the consultation go?
Estelle,
How was your three month check?
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
N ICU 4.4 lb
Erythema Nodosum 85
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 01-24-2012 at 01:25 AM..
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01-24-2012, 10:37 PM
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#19
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Senior Member
Join Date: Nov 2009
Posts: 65
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Re: Johns Hopkins Her2 Vaccine Trial
Jackie, thanks for asking. It went very well -- no scans or anything at this time -- just blood work (looked "excellent"), and physical exam. There were no indications that I am not still NED. Its still a little scary with no treatment, but I have fought it every way possible. However, I am not returning to "normal", or returning to anything for that matter. I am moving forward!
__________________
Estelle
DX 1/09
two tumors; .7 cm and 1.0 cm, same duct
lumpectomy 2/09
10 positive nodes; scans show no further metastisis, Stage IIIc
AC completed 5/09
Tykerb/Taxol (trial) 6/09, terminated from trial (due to bad reaction to Tykerb) 8/09; switched to Herceptin/Taxol
Taxol finished 10/09
Bilateral mastectomy
Radiation 11/09 to 1/10
Herceptin finished 7/10
NED
Start Vaccine Trial at Hopkins 2/11
Finished Vaccine Trial 11/11
Continue NED
Port Out 11/11
4 YEARS NED 2/12
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01-25-2012, 03:07 PM
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#20
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Member
Join Date: Jan 2010
Posts: 18
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Re: Johns Hopkins Her2 Vaccine Trial
Hello, I am considering a trial at the University of Washington in May or June of 2012. I believe I want to do the trial, however, I am a bit scared even though I feel like I have had most of my questions answered. It is new terriotory for me, and the unknown. What do you think? How was your outcome on trial or trials?
Candy
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