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01-26-2007, 09:50 AM
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#1
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Senior Member
Join Date: Aug 2006
Posts: 492
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Ladies and Gents, I started the Her2 vaccine trial
Just got back late last night. This is University of Washington's Phase 1 trial of their DNA plasmid-based Her2 vaccine.
For anyone that is interested- eligibility criteria include her2+, completed therapy (chemo, rads, major surgery) and Stage IIIA-IV NED. Hormone therapy, herceptin and bisphosphonate therapy are allowed concurrently.
You go a total of 7 times over a 15 month period, tests, vaccinations (3), followup.
Anyway, they treated me very well. The first day is the longest and I had my own room with hospital bed, TV and a bun warmer- well it was a heating pad on the bed and it felt great.
Patricia Fintak is the coordinator and she can be contacted at (206) 543-6620 or paf3@u.washington.edu
Here is a link to this study overview- they are starting other trials soon
http://depts.washington.edu/tumorvac/trials.php?t=109
And a special someone on this board was nice enough to meet me for lunch and give me a tour of Seattle. It was lovely! Thank you Stephanie!
I wanted to "pay it forward" so to speak for all the gals before me that tried herceptin.
Like I always say- are we there yet?
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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01-26-2007, 10:13 AM
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#2
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Senior Member
Join Date: Feb 2006
Location: South Florida
Posts: 131
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Margerie
I just wanted to wish you the best on this innovative trial. I think is it great that you are able to participate and pave the way for the future. Thanks to people like you we will be able to learn more about this disease and Her2. You Go Girl Good Luck !
Hugs
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Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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01-26-2007, 10:48 AM
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#3
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Deceased
Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
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Hi Marjerie,
Good for you! I am getting my scans next week and hoping to be stable or NED in order to enroll in another vaccine trial (did one at Penn last year). I'd love to go to U of W since they are so cutting edge in this area, but I am on the east coast so the travel is a big consideration.
Please keep us updated on how it goes.
Donna
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Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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01-26-2007, 11:19 AM
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#4
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Vaccine
Hi Margerie: So glad to hear such good news. Lucky you, got to spend some time with Stephanie, one of these days- I live in San Diego, Ca, I will be visiting Seattle and will swing by to say hi to Stephanie. Keep us posted please!!!
__________________
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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01-26-2007, 11:21 AM
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#5
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Ned
What exactly is the criteria for NED. Tumor marker, CT Scan, etc. I appreciate your response. Also how long do you need to be NED in order to qualify for this trial. Thank you Margerie.
__________________
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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01-26-2007, 11:35 AM
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#6
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Thank you Margerie for being a vaccine pioneer. Also thanks to all the Herceptin pioneers on this board. MJO
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MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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01-26-2007, 03:42 PM
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#7
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Senior Member
Join Date: Aug 2006
Posts: 492
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Adriana,
Got out my paperwork- allowed "Stage 4 with metastasis in remission defined as no evidence of disease. Stable or healing bone disease by radiographic evaluation which may include, but is not limited to, bone scan, MRI or PET scan documented within 60 days of enrollment to study and NED status for extraskeletal metastasis."
There are some blood test ranges (SGOT, WBC, creatinine, ANA, etc.) that need to be in the normal range and normal MUGA also required if you are receiving herceptin while on the study.
No mention of tumor markers for breast cancer is mentioned in my paperwork. They do want normal CA125 for ovarian cancer girls.
Anyway, I am sure you can email Patty and get your specific answers- she is great!
__________________
Are we there yet?
Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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01-26-2007, 05:50 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Thanks for posting - good for you! I'm also trying to get into that study as well but have been waiting for a response from Patty to get the medical release to start the screening. Maybe I'll give her a call if I don't hear from her soon, you've got me inspired!
Good luck
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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01-26-2007, 06:36 PM
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#9
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Way to go Margerie! I was in UW's Phase II Study of the ICD Peptide-Based Vaccine for Stage IV Her2+'s. They are a wonderful, dedicated group up there! And Steph and Emil are so sweet. Glad you are in the trial, and be sure to keep us posted.
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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01-27-2007, 03:41 AM
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#10
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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All the best Margerie with the trial vaccine in Seattle. Please keep us posted. Sounds like you are in good hands there and an added bonus of having one of out sister's there (Stephanie). I will be in Seattle in September over labor day weekend. Anyone have suggestions on what to do when we aren't busy with the wedding? We will be there for 4-5 days.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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01-29-2007, 10:59 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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thank you for posting the information. wish it was available to us all huh? including the early stagers ( so they don't become late stagers!) what do we have to do to take care of this at the beginning and not at the end. doctors and fda needs to hear the cry
keep us in touch how you do.
Good luck
MCS ( maria)
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