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Old 04-26-2009, 06:39 PM   #1
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
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Moved from 'screening room' posts for mary murphy

mary murphy
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mrs
Iam a her 2 breast cancer sufferer. My sister has just been diagnosed with the same. She is about to start a course of chemo at the same time as having herceptin. While I'm glad she is having Herceptin I was not allowed it at the time and since then I've been told that it is of no use unless it is administered at the early stage.

I constantly worry about the return of the cancer as I had to forego my last two chemos because of side effects of paclitaxel (neuropathy). I get no ajuvunct treatment except a yearly visit I'd like some blood checks or mri scans done to make my 5 year survival a worry free time. How can I ever have some checks or Herceptin.? I do not want to wait until it might come back, is there anything I can do?



Mary, I hope you do not mind but I moved this so you could get more replies. Best of luck.>>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 04-28-2009, 07:24 PM   #2
Barbara2
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Mary Murphy, could you please share a bit more info about your cancer? Notice the cancer history that many people use below their signature. That is there to help the other members know the background and treatment of the cancer, which is important for the reader to know in order to share thoughts and suggestions that may be helpful to the person who is posting the question.

When was your cancer diagnosed? What treatment did you receive and how much? You mentioned chemo. What kind? Did you have raditaion?...lumpectomy?...Er+? Pr+? How are you doing now?

Do you live in the United States? I believe many oncs would be willing to give "late" herceptin because it has proven to be of benefit even in that setting.

Do you not get blood work done even during your yearly visit? Many oncs do not want to do scans if there are no symptoms to warrant having tests and scans.

About a month or so ago, one of the members posted a questiion about "late herceptin." You may want to read that, or look for the topic under "search" on the bar at the top of this page becaused this topic has been discussed from time to time. Hope this helps.
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DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 04-29-2009, 08:47 AM   #3
runtolive
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you need to find a new doctor. he/she does not sound very intouch with treating her2 pos breast cancer.. HERCEPTIN IS THE STANDARD.
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