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11-14-2008, 08:35 AM
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#1
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Good News
I had my last TC treatment yesterday. Yeah!
I also got my results back from the CYP2D6 test to see if my body will metabolize Tamoxifin. According to the results, I am 1/1 which means I will be an Entensive Metabolizer of the drug.
I want to thank everyone on this board who takes time to post and keep us all informed about what is going on with BC. If I were not a member of this board, I would not have known about the Elisa test or the Tamoxifin test.
I will start Tamoxifin in December, and I will also have scans. I told the doctor I have apprehensions about the scans, and he told me at this point he does not think I have anything to worry about.
But, I am concerned about what to do next. I will finish my year of Herceptin in the middle of February, and I was first diagnosed Stage IV with mets to my L4 in my spin.
I will have to decide if I stay on Herceptin. I know some of you have stayed on Herceptin. If any of you have any advice, knowledge, or recommendations, I would really like to hear from you.
I have also asked my doctor about getting me in the vaccine trial in North Carolina. If any of you have any thoughts on this, I would greatly appreciate your thoughts.
God Bless all.
Amelia
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11-14-2008, 08:40 AM
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#2
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Senior Member
Join Date: Aug 2006
Posts: 492
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Congrats on finishing chemo Amelia!
I was always amazed that my cancer "to-do" list kept getting longer (the decisions, the decisions)
I did one of the vaccine trials offered at Univ of Wash. The entire experience was terrific.
Wishing you the best of luck in these upcoming days and peace,
Margerie
__________________
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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11-14-2008, 08:46 AM
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#3
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Margerie,
Thank you for your response. My tumor was also multi-focal and two nodes had micro mets in them. I did do neo-adjuvant therapy prior to my surgery.
So you would recommend the trial? How do you know if you got the vaccine? My oncologist said I might not get the real vaccine. When do they tell you if you got the vaccine?
Amelia
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11-14-2008, 09:52 AM
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#4
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Senior Member
Join Date: Aug 2006
Posts: 492
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I don't know how the UNC trial works, but the vaccine trial I did at UW was a Phase I study. They were evaluating immune response to three different doses of vaccine. There were no placebos. I got the middle dosage of the vaccine, and did get a measurable immune response. Of course, they do not know if this will translate into more DFS for me and other patients, but I figure it could only help. And I wanted to pay it forward like all the gals that did Herceptin in clinical trials.
Here is the website for UW Tumor Vaccine Group
Wishing you luck on your "journey" I guess it is self-discovvery (the journey) but I wish it was a lot more fun!
__________________
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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11-14-2008, 11:12 AM
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#5
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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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Amelia
That is great news to hear, always room for news like that! The end of chemo....ah...how glorious that sounds to the ears. As Margerie said, "The decisions, the decisions." You are off to a terrific start, now run with it girlfriend! Everything else will fall into place in time. Thanks for letting us experience firsthand of this spectacular information. Love and hugs.>>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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11-14-2008, 01:39 PM
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#6
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Senior Member
Join Date: Sep 2008
Location: Eugene, Oregon
Posts: 347
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Tch
Big congratulations to you Amelia!!!!
I'm having TCH and I just had #5 out of six yesterday, the end is so close I can taste it! Of course I still have Lumpectomy and radiation to look forward to, and about 9 more months of Herceptin, maybe Tamoxifin...but finishing chemo feels like a HUGE step.
It's a long fight, but it makes us all stronger.
Celeste
__________________
"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.
"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)
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11-14-2008, 03:36 PM
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#7
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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Hi Amelia,
That is good news!
Glad to hear things are going well...
Terri
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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11-14-2008, 06:28 PM
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#8
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Congratulations, Amelia!
__________________
For Nicola
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11-14-2008, 07:26 PM
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#9
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Amelia....You sound like such a sweetheart. I'm so happy for you that you are at the end of your chemo. What a great feeling that is.
I, too, would like to learn more about the vaccine trial. Is it for early stagers who are NED or for stage 4 people. Would love to get a vaccine for more added assurance.
Sending you my love and a congratulatory (is that a word) HUG.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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11-15-2008, 08:03 PM
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#10
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Ameila,
I am so happy for you...I remember well when you started....and look now the TC is behind you! Also,
it is time for some of your favorite cake! Celebrate!
All good wishes, my sister!
Big 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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11-16-2008, 05:51 AM
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#11
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Amelia
Congratulations on conquering the chemo....whenever i read your name, I think of a book my son loved when he was little (given to him by his first grade teacher) called Amelia Bedelia....
Clelbrate, you have earned it...may the rest of this journey be smooth sailing for you!
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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11-16-2008, 05:45 PM
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#12
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Amelia,
Congratulations on finishing TC!
Did your onc say anything specific about staying on Herceptin? Generally, if a person is stage IV they would stay on the drug, but I'm sure there are exceptions.
It seems that you have limited disease in your vertebra, and may be able to take a drug like Zometa to help your bones. I have not had bone mets, so I don't know a lot about treating them. But I'm sure others on the board can give you more information.
Great news about your Tamoxifin test.
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 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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11-16-2008, 10:44 PM
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#13
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Can you elaborate on this CYP2Dyou speak of?
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11-17-2008, 05:28 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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Thank all of you for your replies. This is the first time I have had to check my mail since Friday. I had to take two units of blood Friday afternoon.
Marie, you and the Mighty Oak are always in my thoughts. Tell the Mighty Oak to be "strong and courageous".
Celeste, it was a relief when I finished my neoadjuvant therapy to be getting ready to start another stage of the journey. You also be "strong and courageous."
Bill, Marejo, and Jean you three have helped me more than you will ever know.
Joan and Shelia thank you for just listening and adding new knowledge to my journey.
Rich, the test determines if my body metabolizes Tamoxifin. The ladies on the board introduced me about this test. Instead of going into the treatment blindly, I now know that my body will metabolize the medicince.
God Bless all of you.
Amelia
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11-17-2008, 05:33 AM
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#15
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Terrie and Ruth,
I hope all is well. Thank you for the advice and encouragement you always send my way.
Please let me know about Ruth's results.
Terrie, I thought about you yesterday afternoon when I was walking around the yard picking up pecans. You encouraged me to walk when I do chemo, so I am still walking.
Amelia
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11-17-2008, 07:50 AM
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#16
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Senior Member
Join Date: Jul 2006
Posts: 869
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Hey Teach, Wonderful news....your teaching buddy Ceesun
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11-17-2008, 08:42 AM
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#17
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Does the test work with Aromatase inhibitors too?
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11-17-2008, 10:35 AM
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#18
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Rich,
This test only works with Tamoxifin as far as I know. You will need to ask Lani, Beck, Jean, or one of the other women who stays on top of this kind of knowledge.
Amelia
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