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Old 08-24-2015, 04:45 PM   #9
karina14
Member
 
Join Date: Mar 2013
Location: Toronto, Canada
Posts: 23
Re: IT Herceptin needed in Canada

Thank you! I don't qualify for the Neratinib + TDM1 trial from PMH because I have already been treated with TDM1 and I had progressed. But I looked at the trial from Dana Farber with Neratinib and Herceptin and I would qualify to something like that (to treat the deep brain).
However here comes the question: Can someone from Canada be part of a trial in US and do the treatments in Canada (this way most of the procedures would be covered by OHIP)? From the drug company perspective I am guessing would not be a problem.... but who knows?
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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






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