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Old 03-12-2010, 11:47 AM   #1
Joan M
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Join Date: Oct 2007
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Remember Lani's Na/I symporter test post?

I sent a sample of my lung tumor to Stanford University and it tested positive for the iodide symporter.

Lani's post referred specifically to bc brain mets, but as it turned out, the PI wanted any bc met.

I tried to send a sample brain met from my Oct. 2008 craniotomy, but it didn't work out. At first, Stanford didn't receive enough, and another sample could not be sent because the other blocks were preserved in such a way as to exclude them from testing (preserved in OTC, rather than in paraffin).

Since that didn't work, I had a sample of my lung nodule from April 2007 sent, and it tested positive for the symporter.

However, each nodule might have a different result, such as when my lung nodule tested HER2+ positive but my brain nodule tested HER2-. So, a sample always has to be tested for whether it's Na/I symporter positive.

Even though I was positive, I was not eligible for the next step because I have no measurable disease. The next step would have been to determine whether a tracer lights up anywhere and then step three would have been to treat it with the iodide. And I guess they wanted bc patients with disease that's already showing up in scans. The Na/I symporter test for bc is similar to that for treating thyroid cancer.

The PI's research assistant told me yesterday that if I develop another nodule that's biopsied, I can send another sample for as long as the study is still being conducted. Keep this in mind. I got the impression that they're looking for as many samples as possible.

This is a pilot study, and the details can be found under NCT00568438 at clinicaltrials.gov. In short, the PI is looking for another way to treat bc, especially for women who are triple negative. Also, the symporter crosses the blood brain barrier (BBB).

I'm not sure whether I've used the word symporter correctly, etc., but this basically explains it.

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!!

Last edited by Joan M; 03-12-2010 at 12:05 PM..
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