DebCOS Posted March 31, 2017 Share Posted March 31, 2017 Good morning! I am a grateful survivor of NSCLC, having been diagnosed Stage IV December 2015. I've been on Tarceva for 15 months, and it melted the tumors away to being mere scar tissue at this point, NED! As much as I recognize how lucky I am to be in the early years of targeted therapy (3 years ago, I could have died in 6 months from this), I still have a bone to pick with cancer. Just not good enough that it's not GONE completely! Never want to say it's "okay" to live with cancer! Doc says targeted therapy is to be done for the rest of my life, that I won't stay cancer free without it. Not acceptable! I'm learning to live with most side effects - my hair broke off and came back looking like a pile of public hair on my head. I get diarrhea frequently, have learned what to eat/not eat and to time things around it. Skin rash is gnarly - heavy doses of doxycyclene to counteract, which makes me so damn sun sensitive, but really have no options around it - people should invest in sunscreen companies because how much I buy! But the latest news is discouraging. . . My doc had mentioned to me long-term consequences of having Tarceva in my system - it is, let's face it, a poison - even if targeted, it DOES take out some normal cells, that's why we have side effects. Some system issues to monitor - heart, liver, etc. I asked about my joints because they hurt like hell at times. He didn't think they'd be involved. So now that I know there is some collateral damage, I wonder if others suffer from it. Does anyone suffer joint pain? Mine's in my ankles, knees, hips and shoulders. Is this what people call neuropathy? Sometimes it keeps me from sleeping at night. What do others do? As for my refusal to "live with cancer," I know it is the new norm to let it be a chronic disease, like MS, or diabetes, which can be controlled. I say we need to continue to fight to kill this sinister evil, to ensure it is gone completely and gone for good! Let's not slack on the research! Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 31, 2017 Share Posted March 31, 2017 Deb, My neuropathic pain stems from Taxol and it is very bothersome indeed. Here is information about it and some the ways I approach my difficulty with sleeping. I likely didn't take Tarceva for long enough to experience neuropathy from it but I do have residual "lesions" that affect my scalp. And, I was only on the stuff for 4 months! I also had joint pain but it was about a 3 day affair after each infusion. It was, however, nasty especially after an injection of Neulasta to boost white counts. Neulasta caused bone pain so together I was immobile and miserable. In an interesting conversation with my oncologist recently, he told me about a side-bar benefit of the increasing percentage of lung cancer survivors -- the medical community is learning more about side-effects. While in treatment, he predicted my "Taxol Toes" would stop about 6 months after my last infusion. Now, thirteen years later, he reports studies are showing chemotherapy caused neuropathic pain to be a long term effect. Perhaps the same can be said about Tarceva. Stay the course. Tom Mally 1 Quote Link to comment Share on other sites More sharing options...
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