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karina14 · 12-21-2014, 05:45 PM

Evelyn, my sincere condolences for loosing Susan. I am very sorry. She was a fighter. And thank you for sharing her story. She fought the disease for more than 10 years and more, the brain mets, that are so tricky and there is so little one can do for them. That shows courage.

I do hope doctors will do brain MRIs when you are diagnosed with mets (especially if you are her2+) and also to follow up progression. In Canada finding brain mets is not done proactively, only wen you have symptoms. That is how I discovered mine. The shock was huge when the MRI showed between 50-100. After wbr, they came back and did a second wbr. I know they will come back in few months and wbr will not be a solution again. Looking into trials for a systemic treatment that might help. I was lucky that I had every 3 months brain MRIs to verify if they grow again. Other oncologists might not do it.

12-21-2014, 05:45 PM	#14
karina14 Member Join Date: Mar 2013 Location: Toronto, Canada Posts: 23	Re: My daughter, Susan. Evelyn, my sincere condolences for loosing Susan. I am very sorry. She was a fighter. And thank you for sharing her story. She fought the disease for more than 10 years and more, the brain mets, that are so tricky and there is so little one can do for them. That shows courage. I do hope doctors will do brain MRIs when you are diagnosed with mets (especially if you are her2+) and also to follow up progression. In Canada finding brain mets is not done proactively, only wen you have symptoms. That is how I discovered mine. The shock was huge when the MRI showed between 50-100. After wbr, they came back and did a second wbr. I know they will come back in few months and wbr will not be a solution again. Looking into trials for a systemic treatment that might help. I was lucky that I had every 3 months brain MRIs to verify if they grow again. Other oncologists might not do it. __________________ 2011/03 - dx IDC (15 weeks pregnant), Rx mastectomy, 1.5 cm, stage 1B, grade 3, ER-/PR-/HER2+, 1/20 2011/04 - started 3xFEC while pregnant (2 sessions) 2011/06 - daughter born healthy @36 weeks 2011/08 - 3xTaxotere & Herceptin, followed by 1 year of Herceptin, no rads 2013/09 - mets to liver, bones & lungs, started weekly Taxotere + Herceptin 2013/10 - stopped Taxotere after 4 weeks due to severe side effects, stay on weekly Herceptin, pleurodesis to right lung (previously 2 x thoracentesis) 2014/01 - Dec CT scan shows good liver response but progression to bones, Pamidronate plus Herceptin only 2014/01 - brain & spine MRI (symptomatic) shows very large number of mets in the brain, do urgent WBR (20Gy/5 fractions) 2014/02 - Herceptin, Perjeta, Abraxane, XGeva 2014/08 - stopped Abraxane, stayed on Herceptin, Perjeta, XGeva 2014/12 - brain mets progression, second round of WBR (25Gy/10 fractions), lungs stable, light activity in liver 2015/02 - progression in lungs (lymphangitic carcinomatosis), stop Herceptin / Perjeta, start TDM1 2015/07 - stable on the extra cranial disease (lungs, abdomen) 2015/07- brain MRI show tumors went to the leptomeningeal area and also new one started to grow deep brain, still on TDM1, not sure of next step .... 2015/08 - looking for help to get IT Herceptin in Canada