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Old 04-30-2012, 05:39 AM   #15
Joan M
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Re: Treatment Question

Hi again, Greg,

I'm the person who started the discussion, why isn't your wife still on Herceptin? And I think you've gotten a lot of good responses from members of this board regarding their successful and unsuccessful treatments with and without Herceptin.

I had stage 2 breast cancer in 2003 which was treated with a mastectomy, adriamycin, cytoxin, taxol .... and Herceptin off label. Off label means that Herceptin had been approved for stage 4 breast cancer several years earlier but not for early stage breast cancer. At the time I took Herceptin it was in clinical trials for early stage, but I didn't want to go into a trial fearing that I would get randomized to the arm that didn't get Herceptin.

As it turned out, my oncologist gave me Herceptin each week for 1 year, anyway, since it was freely available having been already approved by the FDA for advanced breast cancer (stage 4).

Fast forward to 2007 when the breast cancer spread to my lung: one 1 cm nodule in the apex of my left lung that I had removed with a wedge resection (surgery). It recurred again in the lung in the same area a year later even though the margins were clean, and I had it ablated with radiofrequency ablation (RFA).

The ONLY drug that I've been on since January 2007 when my cancer became stage 4 has been Herceptin. So, needless to say, Go figure, since the drug obviously didn't work the first time. Since the tumor had been removed surgically initially and then via RFA, my oncologist offered to give me an "adjuvant" course of chemo (xeloda, tykerb, and herceptin), after each of these procedures but I declined since at the time I was working (adjuvant, meaning 3-6 months of the chemo drug, which is xeloda). (In 2008, the breast cancer spread to my brain and I had a craniotomy and targeted radiation to the tumor bed. But that tumor was HER2-).

Coolbreeze said it best above, "a lot of oncology is guess-work." I would add, a lot of it is a crap shoot. I've been NED since October 2008, or since the craniotomy. So I wouldn't hesitate to suggest to your oncologist to add back Herceptin if you feel your wife's cancer seems to be advancing again, because each patient is different and some treatments might work at different times or in combination with different drugs, which is what happened in my case. This weekend I went to an oncology conference in Philadelphia for women with metastatic breast cancer and several doctors there discussed sometimes using older drugs that may still work well but have been eclipsed by newer drugs.

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 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!

Last edited by Joan M; 04-30-2012 at 05:52 AM..
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