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Old 01-06-2011, 02:49 PM   #21
DeenaH
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Join Date: Apr 2010
Posts: 129
Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Thanks Ellie. I am excited! I have a PET/CT tomorrow in fact. Not related to the trial though. I had a CT scan in October that revealed some lung and liver nodules. This PET/CT is to monitor them and see if they are cancer or not. The CT report said that the liver nodules (2 at less than 2mm) were likely cysts. The lung nodules could be a number of things. My tumor markers are at 14, my bone scan and brain MRI were clear, so I am hoping the PET/CT will be clear too. They did say to drink alot of water since they will be taking alot of blood. I'm used to it. Thank goodness I have a port!
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March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast.
April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly.
August 2010: Finished chemo!
August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast.
September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm.
September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2.
October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not.
12/15/10: Brain MRI clear
1/7/11: PET/CT
1/13/11: Recurrence in lungs. Start Tykerb
5/13/11: Progression in lungs
6/3/11: Lung surgery to get tumors for chemosensitivity testing.
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Old 01-06-2011, 03:31 PM   #22
Ellie F
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Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Will be thinking of you tomorrow. Please let us know how it goes,praying that the nodules are b9.

Ellie
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Old 03-26-2011, 09:45 AM   #23
annfromatlanta
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Location: Atlanta, Ga USA
Posts: 6
Wink Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Hello! I am waiting to hear if I have been accepted into the Seattle Her2 Trial. Any news on how the participants are doing would be greatly appreciated. I live in Atlanta, so it will be a lot of long trips for me. (Not as long as NZ).

Please feel free to email me. annwertz@yahoo.com

Thanks!
Ann
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Old 03-26-2011, 09:28 PM   #24
StephN
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Location: Misty woods of WA State
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Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Hi Ann -

Check in with "schoolteacher" here. She is from your neck of the woods, and also traveled here for the vaccines.

I live in the Seattle area, and would love to meet you at the medical center if you are accepted.
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"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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Old 03-27-2011, 08:54 AM   #25
annfromatlanta
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Location: Atlanta, Ga USA
Posts: 6
Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Hi Steph!

Thank you so much for replying. I'm new on this forum and desperate to hear how those who have participated in the Seattle Her2 study have fared. Obviously, it will be a huge investment of time, travel, and $$$. I have been advised against vaccine trials by 2 oncologists in Atlanta. I have been told that Emory Univ. (in my town) will be getting the TDM-1 + Herceptin trial w/in the next few months & encouraged to participate in that trial once it is here. Plus, I've been advised to do a Navelbine + Herceptin + 50/50 chance of Everolimus trial until the TDM-1 trial gets started. I'd prefer to go the vaccine route & forgo the toxic chemicals, if possible (as long as I hear success in these vaccine trials). I'll try to contact Schoolteacher. Thanks! And if I do come to Seattle, I'd very much enjoy meeting you!

Cheers!
Ann
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Old 03-27-2011, 10:49 AM   #26
kiwigirl
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Location: Matakana which is one hour north of Auckland, New Zealand.
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Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Hi Anne. I did the trial and felt good the whole way through. At the time we all thought I was NED. I'm not sure what stage you are as you talk about the TDM-1 trial and others.

The only thing you need to be aware of is the vaccine does not cross the blood brian barrier. This is something I did not even consider for brain mets.

Good luck i still think it was a very worth while venture for me as I disease any were else.

Cheers
Jacqui
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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Old 03-27-2011, 08:38 PM   #27
annfromatlanta
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Location: Atlanta, Ga USA
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Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Hi Jacqui,

I am Stage IV. I had not even thought about the blood/brain barrier issue w/ the vaccine.That is certainly something to consider. Thank you for telling me about that. I conclude from reading your history that you did not have brain mets until after completing the trial. I'll bring this up with my oncologist.

BTW, I LOVE NZ! I visited a friend in Waihi on the East Coast and toured the S.I. about 7 years ago. Beautiful country!

Thanks for sharing your experiences.

Ann
__________________
5/05-2 lumpectomies, cancer in 3 sentinel nodes,
9 nodes removed. HER2+++, ER/PR-.
7/05-bilateral mastectomy, reconstruction from thighs.
Port placement in chest.
7/05 to 12/06-Chemo: A/C, Taxol, Herceptin. NED. Port removed.
12/05-silicone implant.
5/08-METS to liver, bones, nodes in chest wall & around kidneys. Power Port placed in chest. Chemo: Xeloda, plus Zomeda, Herceptin.
2/11-CT showed new tumors inside pelvic wall. Largest 2 cm.
4/11-CT shows largest tumor had grown to 3 cm. Started T-DM1 trial.
6/11-CT shows largest Tumor shrank. Others stable.
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Old 03-27-2011, 09:03 PM   #28
kiwigirl
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Location: Matakana which is one hour north of Auckland, New Zealand.
Posts: 89
Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Hi Ann yes the east coast is nice i live on the east coast surrounded by nice white sand beaches. I went to Waihi alot my Grandparents lived there. Its great fishing.

My mets was discovered after my vaccine was finished. During this time I did not have any scans. The mets came as a huge shock but i guess the vaccine is doing it thing. I'll have a MRI and PET in two months.

All the best with options

Regards Jacqui
__________________
Oct 2009 Masectomy 6 cm Tumor . Sentinal node biopsy , Node Positive . Her2 + er/pr -.
Nov 2009 X3 Taxane and Herceptin, X3 FEC
March 2010 25 Rads
March 2010 continued on Herception untill 16 Dec 2010
May 2010 Ultra Sound .... ALL CLEAR... NED
August 2010 started vaccine trial University of Washington
7th Dec 2010 finished vaccine trial
20th Dec 2010 Port removed
3rd Feb no longer ned brain mets
23r Feb start VMAT radiation
August 2011 two new mets to brain and others starting to grow again !!!!
August start tykerb and xeloda
Dec 1 MRI all small brain mets gone. Largest shrunk by 50% only three small ones to go 17mm,8mm,6mm. Mets on there way out. Yeah
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Old 04-06-2011, 07:44 PM   #29
makmak
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Join Date: Apr 2011
Posts: 1
Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Hi there. I just joined this site. I'm in this trial..started in December and came back yesterday from my 5th trip. I have one more vaccine to go. It is a committment but definitely do-able. I too am hoping it's worth it!! Getting scanned in 3 weeks so will know more..
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Old 04-13-2011, 04:01 PM   #30
annfromatlanta
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Location: Atlanta, Ga USA
Posts: 6
Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Hi MakMak,
I was accepted into the Seattle Clinical Trial, but decided to go with a different clinical trial, one that uses the study drug T-DM1. I just had my first infusion yesterday. It was a very difficult choice. Best of luck to you!
Ann
__________________
5/05-2 lumpectomies, cancer in 3 sentinel nodes,
9 nodes removed. HER2+++, ER/PR-.
7/05-bilateral mastectomy, reconstruction from thighs.
Port placement in chest.
7/05 to 12/06-Chemo: A/C, Taxol, Herceptin. NED. Port removed.
12/05-silicone implant.
5/08-METS to liver, bones, nodes in chest wall & around kidneys. Power Port placed in chest. Chemo: Xeloda, plus Zomeda, Herceptin.
2/11-CT showed new tumors inside pelvic wall. Largest 2 cm.
4/11-CT shows largest tumor had grown to 3 cm. Started T-DM1 trial.
6/11-CT shows largest Tumor shrank. Others stable.
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Old 05-02-2011, 06:36 PM   #31
11yr5xsr5r
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Location: Longwood, Fl (burb of Orlando)
Posts: 9
Re: I am on the Vaccine in Washington would like to chat with anyone on same vaccine

Hi, I'm Laurie and am talking with U of Washington people regarding the possibility of a new clinical trial just starting in Seattle for HER-2+ patients that have been maximally treated and not achieved a complete remission. It combines "administering escalating doses of ex vivo expanded HER2 specific T cells after in vivo priming with a HER2 specific vaccine." Discussing with my onc in Orlando Wed am and gathering more info. Any input re responses to the vaccine and experience in Seattle would be appreciated. My e-mail address is tobiah@earthlink.net. Been
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