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Old 12-23-2010, 04:11 PM   #1
Joan M
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Join Date: Oct 2007
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Need your input about treatment

I've been NED for a little over two years, and I'd like your input about whether I should consider another treatment beyond my Herceptin every three weeks.

Although I'm grateful, the longer I go NED the more nervous I get, because I chose local treatments for my lung met and brain met and no chemotherapy, and since I'm metastatic the cancer cells are still around. At the time, treatment after the surgeries was offered, but I declined because I was too busy trying to get back to the office.

I have been wondering about a bone drug such as Zometa or the newer drug, Denusumab, even though there's no evidence that they prevent significantly the spread of cancer to the bone before it appears in the bone. I wonder whether I should add Tykerb or perhaps do a course of Xeloda.

I mentioned this lately to my oncologist and she refuses to give me anything beyond chemo unless another met shows up.

My feelings are mixed about adding another treatment, but those damn cancer cells are still in there and that scares me. I also asked her about a CTC test, but she said they don't do that test.

I get regular CT scans of the chest, abdomen and pelvis, as well as a brain MRI, every three to four months (the last were in mid and late October), and I'm scheduled for PET/CT and bone scans in January. I have not had a PET/CT since June 2009, just before my thoracic surgery for the fungal infection in my lung.

What are your thoughts?

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; 12-23-2010 at 04:23 PM..
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