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Old 03-05-2011, 10:17 PM   #1
Estelle
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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 metastasis, 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 11/09
Radiation 12/09 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
DEIP Flap 4/17)
8 Years NED 2/17
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Old 03-06-2011, 09:00 AM   #2
Jackie07
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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

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.

"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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Old 03-08-2011, 09:58 AM   #3
feonad
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Re: Johns Hopkins Her2 Vaccine Trial

What stage is this for. Good luck.
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Old 03-09-2011, 10:31 AM   #4
feonad
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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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Old 03-18-2011, 05:12 AM   #5
Estelle
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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 metastasis, 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 11/09
Radiation 12/09 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
DEIP Flap 4/17)
8 Years NED 2/17
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Old 05-22-2011, 12:32 PM   #6
Jackie07
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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

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.

"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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Old 05-22-2011, 08:28 PM   #7
Estelle
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Smile 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 metastasis, 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 11/09
Radiation 12/09 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
DEIP Flap 4/17)
8 Years NED 2/17
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Old 05-26-2011, 10:07 AM   #8
schoolteacher
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Re: Johns Hopkins Her2 Vaccine Trial

Glad to hear you are doing well.

Amelia
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Old 12-05-2011, 04:22 AM   #9
jkdowl
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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.
__________________
40 yo. mom to 7 yo old twins girls and 5 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, 10/12, 2/13,6/13
Brain MRI-clear 6/13
Left breast progression 8/14, Ct scan and bone scan-clear
brain MRI- clear
Mastectomy left breast 9/14

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Old 12-05-2011, 09:52 AM   #10
sandra digilio
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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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Old 12-08-2011, 07:48 AM   #11
sandra digilio
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Re: Johns Hopkins Her2 Vaccine Trial

How can I get on this trial?
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Old 12-13-2011, 07:54 PM   #12
annmask
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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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Old 01-06-2012, 03:35 AM   #13
jkdowl
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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.
__________________
40 yo. mom to 7 yo old twins girls and 5 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, 10/12, 2/13,6/13
Brain MRI-clear 6/13
Left breast progression 8/14, Ct scan and bone scan-clear
brain MRI- clear
Mastectomy left breast 9/14

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Old 01-06-2012, 04:57 AM   #14
karen z
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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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Old 01-06-2012, 11:07 AM   #15
Estelle
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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 metastasis, 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 11/09
Radiation 12/09 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
DEIP Flap 4/17)
8 Years NED 2/17
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Old 01-09-2012, 04:20 PM   #16
Adriana Mangus
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Join Date: May 2006
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Posts: 668
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 hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment 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- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 01-12-2012, 04:27 PM   #17
JillaryJill
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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
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 01-24-2012, 01:23 AM   #18
Jackie07
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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

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundless(granules?) nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.

"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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Old 01-24-2012, 10:37 PM   #19
Estelle
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Posts: 72
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 metastasis, 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 11/09
Radiation 12/09 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
DEIP Flap 4/17)
8 Years NED 2/17
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Old 01-25-2012, 03:07 PM   #20
Candy Jacobson
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Posts: 18
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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