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Old 04-17-2008, 09:19 PM   #1
Lani
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Join Date: Mar 2006
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anyone with MS? Has it improved with herceptin treatment???

I heard an anecdotal experience related( after a lecture) by Dr. Ronald Levy --who invented rituximab, another monoclonal antibody which has been used against lymphoma, but recently against rheumatoid arthritis as well-- that another oncologist reported improvement of his wife's neurologic disease, type unspecified, with herceptin.

News today showed a trial of rituximab in MS failed to show benefit--there are a number of other monoclonal antibodies which are showing promise with MS

I was just curious if anyone here with bc and MS had noted improvement during their year of treatment (or longer treatment if Stage IV). I found a paper showing remyelinization occured with herceptin treatment of leprosy!! I periodically send info on new MS treatments to someone in DK and that paper on leprosy gave me the idea to check with you here on this board.

Any and all feedback appreciated.
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Old 04-17-2008, 09:55 PM   #2
Joan M
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Hi Lani,

If only there had already been a cure for MS. I pray everyday for a cure as my sister succombed to the disease in 2000 at the age of 51. She was almost five years older than me and had MS since she was 17. Early on she bounced back from it, married and had two boys. She would have been a grandmother by now. I'm always interested in MS research.

Thanks.

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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