Judy M2 Posted August 13, 2020 Share Posted August 13, 2020 I've recently joined and posted a couple of comments to others' posts. At LouT's suggestion, I am introducing myself and telling my story. Apologies that it's a long one. In June 2019, I lost my voice and went to the doctor (not my PCP, who wasn't available), who diagnosed me with allergies and suggested I follow up with an ENT. He diagnosed acid reflux. I was on omeprazole for months without improvement, so I went back to my usual PCP in October 2019 and at that time, she heard crackling in my lung. She immediately sent me for a chest Xray and that was quickly followed up with a sinus and chest CT scan. She called me into her office on a Friday at 5 pm and gave me a general lung cancer diagnosis at age 66. Then a flurry of procedures followed in very short order, and the final diagnosis was Stage IIIB NSC adenocarcinoma with Exon 19 mutation. I went back to the ENT in November 2019 and learned that the tumor in my left lung was pressing on the nerve to my left vocal cord, permanently paralyzing the vocal cord. I had a bulk injection of Teflon into my left vocal cord which has given me a partial voice for 12-18 months. This was a surprisingly rough procedure and I am not sure I will repeat it. Both my radiation and medical oncologists planned for aggressive treatment, so I started 30 sessions of radiation and 6 rounds of chemo (Carboplatin and Taxol) in December 2019, ending on 1/15/20. About 2 weeks into radiation, I was fatigued, but worse was painful esophagitis that progressively got severe. I regret not getting a feeding tube that the chemo nurse suggested. I became severely deconditioned and was so dehydrated on my last day of radiation that I could barely ring the bell. I arranged with the chemo center to get hydration 3x per week. I wasn't able to get the right pain management at that time. On the evening of Valentine's Day 2020 I experienced severe abdominal pain that landed me in the emergency room. A CT scan revealed that I had a perforated sigmoid colon and had emergency surgery that night. I did have sepsis and would have died without the surgery. I was in the hospital for 10 days and then a rehab facility for another 10 days. Luckily in the hospital I was able to meet with an excellent pain management doctor and she prescribed methadone (later replaced by Fentanyl patch after I went on Tagrisso) for the esophagitis. After I was discharged I was still so weak but have slowly improved, and today I am lucky to be pain-free and almost back to normal. I do think my hospital and rehab care was excellent. I went on Tagrisso in March 2020 and my PET/CT scans are now showing good progress. My medical oncologist is very happy with my progress to date. So why did I get lung cancer? None of my doctors can be sure, but I was an office worker in the exposure zone in Lower Manhattan pre- and post-9/11. So I've enrolled in the 9/11 Victims Compensation Fund and the World Trade Center Health Program. I did not know that the WTC Health Program offers free annual screenings for different types of cancer (including lung cancer) and I now wish I had enrolled years ago. Anyone who is a 9/11 survivor should enroll even if you are currently healthy. I have had some really difficult experiences these last several months and am very happy to be feeling well again. My poor husband has been an excellent caregiver throughout but I know this has been stressful for him. I am vigilant about Covid-19 precautions and even wear a mask (and face shield) outside while walking my dogs--yes, it can be done! hillham, G.A.M., Tom Galli and 4 others 7 Quote Link to comment Share on other sites More sharing options...
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