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Jan 20, 2019 02:30PM
Jan 20, 2019 02:33PM
Not only will Xeloda help treat the TN bone mets (although it make take a while to see results in the bone--) it also crosses the blood/brain barrier and can help keep the LM mets under control.
Also, do you have a BRCA1 or 2 mutation? Or a PALB mutation? If so, adding a PARP inhibitor could help greatly....if you haven't done testing for BRCA/PALB or other mutations, I would suggest that you consider it. Lobular BC that metastasizes to the LM space frequently is BRCA mutant....and also sometimes HER2 MUTANT--not amplified...it takes gene sequencing to see that (it's not the copy-number amplifications that histologic HRE2 testing checks...) You can be HER2 mutant and HER2 negative--and while only happening in about 10% of all MBC, it can occur in around 30% lobular MBC--so HER2/HER3 mutations are good to look for...they can be treated with anti-HER medications even if histologically you are HER2 unamplified (negative.)
I had a very dear friend with BRCA2 pleomorphic lobular disease who developed LM and brain mets as her first and only metastases...she had good results from IT methotrexate after a few doses and then great results when she added a PARP inhibitor. Unfortunately she died last spring (about a year after her LM diagnosis) from complications of a rare paraneoplastic syndrome (Limbic encephalitis)...it had nothing to do with her treatment, nor was directly related to her cancer activity, according to her neuro-oncologist and seconded by a consultant who specializes in paraneoplastic disease at Mayo...it was just one more thing in a string of bad lucks for her.
I hope that you have a great oncologist to guide your care, and can consider a referral to a neuro-oncologist. I definitely suggest being open to using Xeloda for a few rounds..And note that the 7 days on/7 days off schedule at 3000mg-- or even 200mg--per day greatly reduces side effects and has very similar outcomes to the more traditional 14/7 regimen...it's just far better tolerated!
I hope that you find a manageable regimen...I have another friend who has been dealing with LM mets for almost 4 years (she is HER2 positive, so has other treatment options than you at this point). She still is able to be very involved in her elementary school-aged son's life and says for the most part her treatments are manageable. I wish the same--and for a very long time--for you.
De novo stage 4 May 2015 ILC, pleomorphic, Luminal B. Mets to bone/marrow, ovaries, peritoneum, omentum and colon. Primary was ER+/PR+/HER2- but mets are ER+/PR-/HER2 equivocal; mutations detected: CDH1, TBX3, NTRK3, ALK, EGFR exon 20 insertion
5/2015, ILC, Left, <1cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (FISH)
6/1/2015 Ibrance (palbociclib)
6/1/2015 Femara (letrozole)
9/7/2018 Xeloda (capecitabine)