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Old 12-23-2010, 04:46 PM   #1
Joan M
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Re: Brain Mets came back -- Help Needed

Grace,

I had my brain met treated with targeted radiation and that was two years ago. So far, I'm doing good. And I don't blame you for being anxious. I've been there, and every time I'm ready for the next brain MRI, which is every three months, I get even more anxious.

Let us know what happens, and try to enjoy the holidays. Although I realize that it's hard.

Joan
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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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Old 12-24-2010, 06:54 AM   #2
Mary L
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Red face Re: Brain Mets came back -- Help Needed

I just realized that quite a few of us have onc visits and tests coming up in Jan. It is so nervewracking time. Best Wishes to all us. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 12-24-2010, 01:28 PM   #3
MaryAn
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Re: Brain Mets came back -- Help Needed

It is frustertating to have a doc that will pointedly just deny a treatment that you feel is better for you. While you say that this is your second doctor, I would not let that stop me if I felt my needs were not being met. Doctors are not Gods and I refuse to treat them as such. I hope you get the help you feel you deserve. I wish you had better news, I guess we all worry about turing for the worst and just hearing we will wait til it stops working seems like we will plug up the dam when it breaks as opposed to making a better dam.

I will pray for you sister. We all need good doctors who include us in the treatment decisions or at least let us know their rationale for their treatment choices.
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2/10 Pain in left breast
3/10 Biopsy
4/10 Lumpectomy and 5 lymphnodes removed not affected
tumor HER2 ++ Nottingham Grade 2 margins not clean
5/10 3 problem teeth removed
6/10 radical mastectomy
6/23/10 start on TCH 3 rounds with Herceptin chaser,
9/10 stopped TCH because of allergic reaction to TCH
10/10 UTI
10/10 allergic reaction to antibiotics
10/10 becan FEC (4x) stopped Herceptin for during this regimen
12/10/10 last round of FEC
so far...
waiting to see if I need radiation and will begin Tamoxiphen and Herceptin
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