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Old 10-08-2017, 08:31 AM   #1
Joan M
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Join Date: Oct 2007
Posts: 1,851
Decisions, decisions

I'm trying to decide whether to take a break from Herceptin or put in another port.

My port was removed in 2006 after my treatment for stage 2 breast cancer (ER-/PR-/HER2+), and then six months later the cancer returned to my lung with the same pathology. Ditto for my brain met in 2008.

I've now been NED for 9 years, but my "good" arm seems like it can't take another infusion.

The problem most likely has to do with using one arm for 10 years but also because of an excision made in the upper part of that arm to remove a melanoma in February 2016. The surgery also included a sentinel lymph node biopsy. The two nodes did not have any melanoma cells.

Although the mole on my arm was tiny (and I have many such moles all over), I can say only that I want to know which shark bit me, since I have a huge indentation in my arm. After that surgery I've noticed slight swelling in my fingers and also around the incision.

I think that it's now time for another port, although I don't know whether it can be placed on the same side. Or perhaps to take a break from Herceptin.

In January, my breast oncologist did a Guardant Health 360 gene sequencing test to look for mutations (I believe the test looks at 70 genes). The test found that I have mutations in four p53 subvariants. No other mutations, including no HER2. When normal, p53 acts mostly as a tumor suppressor gene, and I believe it is the most common cancer mutation, mutated in 40% of cancers.
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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!!
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