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Found 4 results

  1. 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!
  2. Hello, new to the forum, but 15 months into Stage 4 NSCLC, with NED at this point. Been on targeted therapy (Tarceva) for 14 months, with excellent results. But I'm being worn down by side effects. And my onc told me last visit that even though I am NED I need to stay on the targeted therapy drugs to prevent the cancer from recurring. For the rest of my life. While I am grateful I did not have chemotherapy and the awful side effects of that - I can work, I can modestly exercise, and do regular daily activities - I still detest the side effects and hate the fact I'm stuck taking "poison" to stay NED. My skin rash is only controlled by doxycyclene in high doses, which makes me uber-sensitive to sun so I stay out (a tragedy for me, maybe not others). I'm learning to live with my hair looking like a pile of pubic hair on my head. I've learned to "time" my GI distress and know what I can get away with and when. But what I worry about most is what my onc says will be "long-term effects of toxicity" with the targeted therapy drugs. He told me I'll soon have to begin monitoring for heart disease and liver disease. Other system failures/diseases will have to be watched. He reminded me that that is why he said, at the very beginning of my diagnosis, "you're life will be shortened, but that does not mean you'll be gone tomorrow, or even 5 years from now." Okay, that's bad enough, but maybe my psyche is getting to me. I swear my joints are giving out on me. I cannot sleep at night due to pain in my hips, knees, ankles and shoulders. I've severely cut back on running - can only walk now. I've mentioned that to my onc - he said that's hardly likely caused by the meds and I should go to my regular doc for resolution of this problem. My head is completely messed up. How can I be thankful for the life I've been given through these awesome targeted therapies, and yet curse the long-term effects. And is it "causing" a mental sense that my joints are affected? I'll go to my regular doc, as suggested, but just wanted to know if others go through the same thing?
  3. I was diagnosed with stage 4 non small cell lung cancer 1/13/16. I had 10 sessions of radiation for cancer in my hips and 6 sessions of taxol/carbo. The hips are healing and the pain is minimal. CT scan showed the tumor on my lung and the tumor on my sternum had both shrunk. My oncologist was very happy with the progress. I just had my 4th infusion of Opdivo. After the next session, I will have my 1st CT scan since starting the Opdivo. No side effects from the Opdivo, but after my last treatment of the platinum base, I have developed peripheral neuropathy in my feet and taking gabapentin. I have two questions: Anybody else on Opdivo and if you are, how is it going? Is there any other relief/cure for peripheral neuopathy besides gabapentin?
  4. Hello everyone! The Pan Foundation is accepting applications for a Patient Assistance Program for people who are experiencing chemotherapy-induced side effects. For more information, or to apply, click this link http://www.panfoundation.org/index.php/en/patients/assistance-programs/chemotherapy-induced-nausea-and-vomiting Lauren H. LUNGevity Foundation https://www.lungevity.org/support-survivorship
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