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    Lung cancer patient/survivor

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jenwo's Achievements


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  1. huj123, I too have NSCLC Adenocarcinoma with an ERBB2 (HER2) Exon 20 mutation. It is a small subset, so there aren't any targeted drugs approved at this time. I had a second opinion at MDAnderson and he spoke of Trastuzumab Deruxtecan having very positive results in NSCLC HER2+ patients. It is approved in breast and gastric cancers and is seeking approval in NSCLC. The trials available now are only 2nd line, but I would be sure to ask her oncologist about it. I am starting my chemo next week and hopefully will see some relief from the back and hip pain - where my bone mets are - and not too many side effects of the chemo. Keep fighting.
  2. First a little about me. I am a 51 year old wife and mother. I have 2 girls in college and a boy in middle school. I have faithfully had my physical every year and been cleared with little concerns. I have never smoked or been around smokers. I developed a dry unproductive cough and back pain around Christmas. In April I realized I was having a little shortness of breath when I would jog up the stairs. I called my doctor and she ordered a chest x-ray on April 7th and life hasn't been the same since. In early April I was diagnosed with Stage IVB Adenocarcinoma Non Small Cell Lung Cancer. They used the tissue biopsy to determine I have a HER2+ biomarker. The only real symptoms I had were back pain and a slight unproductive cough. I just figured I was getting older. The LC has metastasized to my lymph nodes and bones in the upper left rib and right sacrum/hip. My PDL1 is 70%. I was seeing an oncologist locally that proposed treatment of a single agent immunotherapy (Keytruda), but luckily I was working on getting second opinions. I was able to get in with UC Health Cancer Center in Denver and MD Anderson in Houston. Both of those doctors recommended NOT doing single agent Keytruda as there has been little support to show it works again the HER2+ mutation regardless of PDL1 score. 6 weeks after diagnosis, we finally settled on a treatment plan. I will start Caboplatin+Pemetrexed+Becacizumab chemotherapy next week and also add Zomeda to help strengthen the bones. The UCH doc mentioned that palliative radiation could be a option if the back/hip pain increases. Right now I am able to control it with tylenol. Both UCH and MDA mentioned a promising drug for HER2+ NSCLC patients that may be available through trial or prescription soon, Trastuzumab Deruxtecan, and we want to use that as a second line treatment for me. With the bony mets, numerous lung nodules, large tumors and bi-lateral lung disease, I was given a 2-3 year median life expectancy. I am grateful I have a bit of time to spend with friends and family, but I am still hoping for more. I joined this forum to learn as much as possible about the road ahead. I have never had a friend or family member go through this so I sometimes feel like I am flying blind. I have no idea what to expect from chemo, but I am so ready to start fighting. I know it was the right decision to wait to get all the information and multiple opinions, but I can feel it progressing. My legs and back hurt more and the cough is certainly kicking up a notch. I was lurking a bit and I want to thank you guys for being such a supportive group to each other. I look forward to sharing my journey, and yours.
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