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01-16-2009, 03:41 PM
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#1
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Ameila,
I know how strongly you feel about this and how much you want to be in the vaccine trial.
Will be saying many prayers for you and please let us know as soon as you hear anything.
Best of luck and lots of hugs,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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01-16-2009, 09:46 PM
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#2
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Senior Member
Join Date: Sep 2006
Location: Nebraska
Posts: 154
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Amelia, what vaccine trial is it that you are trying to get into? I was in one at Seattle WA through the tumor vaccine group...just wondering
__________________
Michele Ulmer
Dx.2003 Stage 3b 35 pos nodes
Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED
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01-18-2009, 04:49 PM
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#3
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Amelia,
I'm praying that you'll get into the trial.
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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01-18-2009, 07:39 PM
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#4
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Member
Join Date: Sep 2007
Location: Birmingham, Alabama
Posts: 21
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Amelia-
I am praying that you will get accepted in the vaccine trial. Let me know which one you are trying to get into. I am currently enrolled in the vaccine trial at UW in Seattle. I went for my second vaccine early this week.
Regards, Suzanne
__________________
Dx 8-24-2007
Stage IV with mets to liver
ER +/PR- HER2 +++
10 months TCH completed 5-08
Ooph 1-08
Bilateral Mastectomy 07-08
Currently on Herceptin and Aromasin
NED since 1-08
UW Vaccine Trial completed 5-09
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01-19-2009, 10:33 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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Michele, Joan, and Suzanne,
Thank you for your replies. I am trying to get in the one in Washington.
Joan, I am glad to hear from you. I hope you are doing well. Please let me know.
Michele,
Please let me know where else your BC was. Are you still taking Herceptin?
Suzanne,
Do you plan on taking Herceptin for an additional year?
Amelia
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01-19-2009, 11:52 AM
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#6
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Member
Join Date: Sep 2007
Location: Birmingham, Alabama
Posts: 21
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Amelia-
I plan on continuing to take Herceptin as long as it works for me and I plan on that being a VERY long time! I was Stage IV from initial diagnosis, so I have already been taking it for almost a year and a half. Keep us posted on Seattle, maybe our paths will cross.
Regards, Suzanne
__________________
Dx 8-24-2007
Stage IV with mets to liver
ER +/PR- HER2 +++
10 months TCH completed 5-08
Ooph 1-08
Bilateral Mastectomy 07-08
Currently on Herceptin and Aromasin
NED since 1-08
UW Vaccine Trial completed 5-09
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01-20-2009, 05:53 AM
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#7
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Suzanne,
Thank you for letting me know you are still on Herceptin.
I still have not heard from the final doctor. I hope to hear today.
Amelia
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01-20-2009, 12:52 PM
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#8
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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I got the e-mail this morning. I am in the trial.
Yeah!
Amelia
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01-20-2009, 01:13 PM
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#9
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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That's great news! Glad to have you coming to our Medical Center and hope to be able to meet you as I live only about 20 minutes away. Same for Suthorn next time you are in town.
Since there are more than one vaccine, which one will you be getting?
__________________
"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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01-20-2009, 01:19 PM
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#10
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Steph,
I have contacted the American Cancer Society, and the woman there is sending me information on taxi service from the airport. I may have to come by myself. If you have any suggestions', please let me know. I am looking at flights now. I will probably fly in on the 29, have my appointment on 30, and fly back home on the 31.
Amelia
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01-20-2009, 03:52 PM
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#11
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Congratulations! Amelia.
Wishing you a safe trip and successful trial.
__________________
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 groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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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01-20-2009, 05:33 PM
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#12
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Congratulations Ameila! Wishing you best of luck with the trial and a safe trip.
Debbie in North Carolina
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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01-21-2009, 05:35 AM
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#13
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Thank you Jackie and Debbie. I am very excited about participating. Hopefully, at some point with this vaccine I will be able to stop taking Herceptin.
I thank God for letting me go and participating. This time last year I did not even think I would be alive.
Amelia
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01-21-2009, 08:52 AM
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#14
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Missy,
Thank you for all the help.
Amelia
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01-21-2009, 09:28 AM
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#15
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Congratulations! I am so happy for you.
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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01-21-2009, 09:42 AM
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#16
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Shobha,
Thank you.
Amelia
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01-21-2009, 01:46 PM
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#17
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Oh my goodness, I missed this post and I am so sorry. Gotta go catch up on the prayers after I finish, whew. Praying that this is the magic potion that my great friend Amelia needs. I am simply thrilled you got accepted in this trial and pray that this is all of what you need. See ya, got prayers to say!>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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01-21-2009, 06:06 PM
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#18
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Member
Join Date: Sep 2007
Location: Birmingham, Alabama
Posts: 21
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Ameila-
Congratulations on getting accepted into the trial. I travel back on February 8th for my next vaccine. Please feel free to email me with any questions.
Regards- Suzanne
__________________
Dx 8-24-2007
Stage IV with mets to liver
ER +/PR- HER2 +++
10 months TCH completed 5-08
Ooph 1-08
Bilateral Mastectomy 07-08
Currently on Herceptin and Aromasin
NED since 1-08
UW Vaccine Trial completed 5-09
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01-22-2009, 05:35 AM
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#19
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Believe,
Thank you for your response. I am very excited about participating.
I pray for the Mighty Oak. Please know that. How is he doing?
How are you doing? It has been cold down here in Georiga, and I actually got to see some snow Monday night. Big Flakes.
Marie, God continues to bless me in so many ways. I know it is him that has gotten me into this trial.
Amelia
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01-26-2009, 05:48 AM
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#20
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Thanks, Suzanne, for posting the information.
Amelia
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