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Found 8 results

  1. I have Non small cell carcinoma lung cancer going on now for over 3 years - I couldn't handle the infusion anymore so Tarceva became available to me and I started taking it in December. I am feeling much better with this drug just have a few issues with side effects. The rash on my face isn't too bad - I have antibiotic pills and gel which keeps it down pretty good, but I did start loosing my hair and was concerned but I see that is common. The hair on my face grows like crazy and it is 'kinky' it drives me crazy. my eyebrows are growing with kinky hair too - it does appear like my eyelashes are growing but I did lose some there too - I hope they grow back but I read some ones post they go every which way. Probably the worst is the dry skin. It is terrible. I have tried so many things and nothing works. I am not trying fish oil to see if that works from the inside out. Of course the diarrhea I don't think we can get away from that - I'm just annoyed I don't lose weight lol. anyway all in all I am very happy with this drug it definitely beats the infusion which I was to be on the rest of my life. I was ready to say I take my chances.
  2. 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!
  3. I am now on disability, fighting my cancer is a full-time job. In my past life I was the Business Development Manager for a technology company in Rohnert Park, CA. When not doing advocacy work you can usually find me in a spin class or out in Mother Nature hiking or biking with my friends. I was dx with Stage 4 Lung Cancer in June of 2009. Since then I have done radiation, six cycles of chemotherapy Taxol, Carbo and Avastin for the lung cancer. That was followed by six cycles of Genzar for metastases to my liver. In March of 2010 because I was non-small cell adenocarcinoma I was given a targeted therapy (Tarceva) to try. At that time it was less expensive to try the medication and see if it worked than sending the tissue out for testing, Tarceva kept me stable for over six years. During those years I was given x-rays and CT scans that showed no change in the tumors in my lungs, so it was thought that since the Tarceva was working so well I had the EGFR mutation. As I became more aware of genomic sequencing and knew my tissue had been saved I requested that it be tested for the basic mutations EGFR, ALK, after checking I was told there was not enough tissue for testing. That was also about the time I realized Tarceva wasn’t going to work forever and I probably needed a plan B. Having more knowledge about genomic sequencing I knew high on that list should be a new biopsy to have my tumor tested. In November of 2015 I was working on my friend Tim’s ranch and after a long day of shoveling decomposed granite I notice when Tim and I retired for the night my left leg was swollen. I post everything on social media, so when I posted a picture of my leg I received more than one suggestion it might be a blood clot and I should have it scanned. That scan triggered my Oncologist to order a CT scan the following week and that scan revealed a 1.2 CM tumor in my left lung. This is when my plan B kicked in. Before requesting a needle biopsy of the tumor I wanted conformation the cancer hadn’t metastasized to any other location. So first I requested a PET scan, followed by a bone scan and a brain MRI. It was an all-clear, so now I knew it was only the new ½ inch tumor in my left lung I had to confront. In December of 2015 I had a needle biopsy performed. I asked to speak to the surgeon performing the procedure. He came in as I was being hooked up with an IV. I stated to him that when he was in there snapping away to please don’t be polite, take as much as you like. He shared with me he was just given the request for the biopsy and didn’t know my story. I explained the tissue was going to be for genomic sequencing and I needed as much tissue as possible. After the procedure he came into recovery room with a big smile and shared that I would be proud of him. I knew from my research genomic sequencing takes a larger sample so didn’t want to go back for a second procedure. I post my entire cancer journey on social media and have connected with doctors, scientist, nurses and bloggers, also concerned friends and family that all care about my wellbeing. So I know if I post my treatment plans I will hear from someone if I am off track. I posted about my tissue biopsy and I received a private message from my friend Bonnie J. Addario the founder of the Bonnie J. Addario Lung Cancer Foundation, she asked if I was sending the tissue to Foundation Medicine? I said I didn’t think my healthcare provider would cover the cost. She gave me a person to contact and within a couple of days my tumor was on the way for testing. Foundation Medicine said they would bill my insurance and if there was an issue I could apply for financial assistance, but my wellbeing was there first priority. I had the results within two weeks of Foundation Medicine receiving my tissue sample. I was very impressed with the report, over 24 pages. It discussed my alterations and statics about my alterations, and even ones that I had expression for that did not yet have treatment protocols. The report also listed FDA approved treatments for my alterations and all the clinical trials that were available. Since my girlfriend Penny Blume passed in 2014 from small cell lung cancer I have dedicated myself to advocating for lung cancer research and awareness. I became a Consumer Reviewer for the Department of Defense Lung Cancer Research Program in 2013 and advocate for Lung Cancer groups like the Lungevity Foundation, Team Draft and involved with Lungevity Foundation Lifeline support program which is one on one support for newly diagnosed patients. My connections with these groups have put me in touch with some of the top doctors, researchers and advocates in the lung cancer community. With my Foundation One report in hand I set out to look for a second opinion. I was shocked to find out after being stable on Tarceva for six years I had none of the common mutations, including EGFR. What showed up on the Foundation One report was NTRK1 without fusion and PIK3CA. I was able to connect with Dr. Jeffery Engelman at Mass General Hospital for a second opinion. Dr. Engelman reviewed my reports and agreed with my decision that Opdivo (Nivolumab) was my next best option; I am now on my eighteenth infusion and feeling great and again have stable disease. When I was diagnosed in 2009 with stage 4 non-small cell lung cancer I was given 8-12 months to live. It is because of precision medicine that I am still writing my story almost eight years later, and still mountain biking and enjoying life to the fullest. Penny never had the opportunity to benefit from precision medicine or treatments like immunotherapy. Penny passed on 1-21-2014 at my home in California surrounded by her family. My last promise to Penny was I would continue to advocate for lung cancer research and awareness. This opportunity to share our story helps me keep that promise to her, so I thank you. Be well, Don Stranathan Stage 4 Lung Cancer Survivor
  4. Hi all, I am was dx in March 2016 with Non small Cell Lung Cancer, Stage IV. I had a pleural effusion on my lung, bone mets on brain, spine and pelvis. Started Tarceva in April and Cyberknife radiation to my brain and spine. Most of the tumors have disappeared or shrunk by 70%. Meanwhile, an abnormal lymph node has shown up in my last PET scan and continues to grow a fraction of a cm. It was on the original PET scan but because lung cancer is more life threatening, my oncologist did not worry about it. In 2005, I had Large B Cell Lymphoma, Stage IV. After 6 rounds of CHOP and rituxan, I was in remission and stayed that way for over 10 years. I belong to a group called Inspire and really love it. Just recently, I found out about this group. If there is anyone out there with my similar lung/lymphoma cancers, it would be great to hear from you. Most days I feel great, lead a normal life and feel grateful for the advances in cancer treatments. Anna
  5. 44 yr old man here. Former smoker. Diagnosed on 8/4/2016. Some spread into bones. ONC put me on Tarceva and after only 10 days showed visible results of a reduction. I'm generally looking to meet other Tarceva users and find out more. Thanks all...
  6. First, I apologize for my English, but it is not my mother tongue. t's a relief for me to have found this site. Three weeks ago I knew that lung cancer came back on my mother. It's been terrible trying to show me strong and secure, confident and full of hope all the time when I only have doubts and fears. 3 years ago she was diagnosed with lung cancer in early stage. She was operated and lived well and believing that the worst was over since then. In January (2016), she began to feel terrible pain column. My parents did not worry more than necessary because she always had back problems. She went to a doctor that, after many exams and because of her medical history, decided to do a bone scintigraphy. Although all medical evidence that there was no trace of cancer along those three years, cancer lung had returned and sprawled to the column. The new diagnosis is lung and bone metastasis. I do not know what stage it is because my parents are reluctant to give details to me and my sister. I do not know if I must respect their wishes and only offer my help whenever they need, respecting their will, or contact the doctor be prepared and be more helpfull whatever comes. After 10 radio sessions and 2 of chemotherapy, her doctor made a gene mutation test and decided to combine Tarceva 150 mg with Zometa (one session a month). Thanks in advance for any light or experience that can help me to face this situation and thus be able to help my mother and father to cross through it all with courage, strength and faith. Tania
  7. I thought it might help me to start a thread and update it periodically regarding my mom, mostly for myself but also in case folks like me come searching for people with similar situations. Mom had progressively worsening back pain that started in 2015 - the pain got very bad during the summer and after negative x ray they did an MRI and saw what appeared to be metastatic disease in the spine. Further testing confirmed lung as the primary, and positive for EGFR mutation. This was in November 2015. She had radiation treatment for her back pain which helped tremendously - she had been taking a ton of ibuprofren multiple times a day and was still in pain. The radiation has resolved that nearly completely. She started Tarceva on 11/23, and just had her first follow up scan on January 6 which showed a reduction in her primary site from 2.8 to 2.5 cm! We are thrilled. She had some nausea very early on but we think that might have been a late effect from the radiation. She had been very fatigued and nauseous up until just after Thanksgiving but has been gradually feeling better and better since then. Other than that, she has had some rash and itchy swollen eyes, but nothing too bad so far. I'm so hopeful for a prolonged and continued response! I plan to post updates over time here so just wanted to share our experience so far! Thanks for this wonderful resource.
  8. I have been on Tarceva for over 2 years and within recent months my hair has been getting thinner and limper. This is not something that's usually talked about as a side effect, such as the rash. Has anyone else experienced this?
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