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Old 05-06-2009, 07:53 AM   #1
Ceesun
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Wink Ceesun update and (genetic testing) per Believe's Request

Hi All, Just want you to know I am feeling better emotionally and really appreciate all of the heartfelt comments on an earlier post. Since that slight progression in the lung met, my onc has increased me to 4 and now 5 tablets of tykerb along with the xeloda I have been on since the last couple of years. Not sure just yet when he will do a scan to check things. But pleased he seems to feel there are options should I need them. Since I had thyroid cancer 28 years ago and then breast back in 2003, my onc recommended I have genetic testing back in 04 which I did. It came back BRCA1neg. and BRCA2 with a variant which they thought was not harmful but could not verify. Yesterday while driving through the parking lot at Home Depot(what timing!) I got a call from the genetic counselor telling me that I am now classified as BRCA2negative for sure--that variant has proven to be harmless. I was pleased for my daughters and of course do not know what they have inherited from my hubby's side. Of course there is family history besides me, 2 aunts, 1 cousin but my aunts tested negative for brca as well. Anyway in my case, I do believe my cancers were both induced from radiation to the thymus as an infant more of an environmental cause. But I am relieved for my daughters and I guess this all proves research marches on....a question has been resolved after 5 years. xo Ceesun
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Old 05-06-2009, 09:25 AM   #2
Shobha
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Awesome news on BRCA 2 negative! God bless you with continued good health and peace of mind.

hugs,
shobha
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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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Old 05-06-2009, 08:12 PM   #3
Believe51
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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
Ceesun, I was having a day that I needed to see my granddaughter, Tia. I was reading this post right after you posted it and as I about to reply the knock on the door came. I had her for the day and she just left but for the entire afternoon I floated, I could not wait to talk to you.

I expected to eventually read an update that was not this full of happiness, hope and total relief. I do not exaggerate saying that all of your news was spine tingling to me as I read. When you said your doctor is pleased, this is a medicine itself to thrive on. He is treating your cancer as well as your soul Research marching on, well we know this happens and we are thankful for it. Yet when it touches the graces of a very loved friend, I find it a personal victory and I rejoice besides you. A victory for Ceesun, a victory for research, a victory for others who may need it in their treatment. If we sit and think of the women and men who will follow in these shoes, this is an enormous victory for their journey.

What made me so happy to hear is of the actual results of this test. I can only imagine what you had felt in the middle of that parking lot, listening and trying to comprehend those results. This is another piece to your puzzle, Ceese, the picture becomes more clear and long awaited questions answered. Ed and I knew what his results would be but wanted to check genetics for research purposes for others. To this day this man will look at me with tears in his eyes and express how thankful we never had children together. Of course when we met I was the one ill and had a total hysterectomy one month before the marriage. Maybe some things are really meant to be. I felt chills reading that over and over. Dealing with breast cancer is enough for one to deal with, to carry those worries seems it would be unbearable. I am so happy that this journey of yours has had some weight lifted from those shoulders.

I wanted to hear you were feeling somewhat better, knowing that this is a hard feat to achieve. I never expected just how happiness you would be feeling. Hope, options, research moving forward but most of all, those results. I am so truely thrilled for you, Ceesun. Thanks for sharing yourself with us, I totally appreciate your friendship. And Ceesun, thanks for unknowingly passing on hope and inspiration at a time in my life that Ed and I could use some. Lots of Love.>>Believe51
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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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Old 05-07-2009, 04:44 AM   #4
schoolteacher
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Ceesun,

Congratulations on your good news.
Hope you have a good day.

Amelia
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Old 05-07-2009, 06:21 AM   #5
WomanofSteel
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I am glad that you and your daughters can breathe easy. Hope all your other issues subside quickly.
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 06-15-2009, 09:50 AM   #6
Soccermom
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Ceesun,
I just read this and wanted to say that i know how relieved you must be ~
much love,Marcia
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