At 39yrs old Hubby DX with S4 NSCLC

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At 39yrs old Hubby DX with S4 NSCLC

by mita811 on Fri Apr 05, 2013 02:39 AM

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2 yrs ago on Dec.2, 2010 we got the DX, he is not a smoker. We ofcourse, were devastated we have 3 children now 20yrs, 6 yrs and our lil miracle 3yrs. We went to the Cleaveland clinic in Weston, Florida biggest mistake of our lives. They basically said he had 6mo to live if he did nothing and 1yr if he did chemo, BUT if he did this clinical trial he had about an additional 4mo. Thankfully we found another Dr. in Boynton bch who saved my hubby's life. He did the EGFR testing that was never done at the clinic and found that he was compatible with the already FDA approved for 8 yrs Tarceva. He started of with 100mg in mid 2/11 and less than 2 mo later he was tumor free. It's been 2 yrs now and he's still on the Tarceva pills at 225mg per day.

My questions are what is the highest dose of this medication that anyone has been on before becoming unbearable?  What side effects have you experienced? If your cancer has outsmarted the Tarceva what other medication are you taking? How long have you been on the Tarceva?

At first he had no side effects, but when he started to take the 175mg he started to have some side effects. Now the side effects are begining to become a problem. He's got the rash on his hands and arms a few pimples between his torso and legs. I don't know what else he's feeling because he pretty much keeps it to himself and wont say anything. He's extremely snappy has no patience with the kiddos and is becoming increasingly tired. He has to go again for a PET scan in the next few weeks and I'm terribly afraid of what may happen. His Dr. last said that if the meds are not working that he would have to start chemo.

I remember what happened when he first did the chemo and he was miserable and I just don't want him to go there again anyother option would I think be better. If you could share your experience and or any tips I'd be more than greatful.

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