My wife Lynda was diagnosed Sept/13 with stage 4 primary lung , egfr. She had WBRT in Sept. Was on Iressa until Mar/14. Pulsing Tarceva, 1500 MG every 4 days since early March. Has lepto and affecting CNS.
Last week we learnt that brain is stable however progression liver and spine.
One well doc on west coast suggested that she continue Tarceva at same rate but add 900/1000mg Alimta and carboplatin 5 aus every 3 weeks. Thus high dose of alimta to keep fighting brain mets and lepto plus go after cancerous cells in body.
Other well known doc says no. No proof , no evidence, no publication on high dose Alimta, stick to 500 mg , normal dose.
Third well known doctor says he may get her in AZ 9291 trial if she tests positive for T790M.
Lynda is scheduled for carbo/alimta this coming Tuesday. If she commits to this , she may miss AZ opportunity. If instead we go for AZ which we would only find out in 3 weeks if she can get in, we are concerned that she will lose benefit of the pulsed Tarceva that kept her brains mets and lepto in check so far.
What should we do ? Our local onc openly told us he does not know.
He claims Lynda is in uncharted waters primarily by being the first he has to ever pulse 75 Tarceva pills per 30 days! Lynda is a first for him and others.
We need some guidance and are totally unsure of ourselves on what to do. Lynda tolerated Tarceva well. No diaheria, no rash... however fatigue and loss of appetite [ taste buds ] .
All comments , opinions and experience are very very welcome. Lynda is 58, non smoker, always healthy and totally surprised with such a severe prognosis when the only symptom was 6th nerve palsey and in the end caused by brain mets!
Thanks for your website, thanks for your involvement and commitment to helping people in need.