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Found 2 results

  1. 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!
  2. Hello, my 69 yo husband was diagnosed with lung cancer in April; he started 6 weeks of radiation and chemotherapy in June. He just finished the last radiation on July 29. He was doing well for about 4 weeks but the last 2 weeks have been tough. Esophagitis (inflammation & constriction of esophagus) was mentioned as a possible side effect by his radiation oncologist. In early July, he was given recipe for a "miracle mouthwash" (lidocaine, Benadryl, antacid) which you swallow. It is supposed to coat the throat and esophagus, numb it, so he can swallow and eat, drink. He did not like the taste, said it changed the taste of the food or drink, numbing only lasted a minute or so and stopped using it. He has lost weight, is 6'2" and weighs 151 lbs. When he tries to eat soft foods or drink water (has to use a small coffee stirrer type straw), it is painful, so he doesn't want to try anymore. If he happens to sip too much liquid or does not chew soft food up completely, he ends up retching with a lot of chest pain (does not usually bring anything up). He had a cup of chicken broth one day; the next day he had half a soft boiled egg - that's it for the entire day; He was given oxycodone for pain but it had little effect. Recently, he had IV morphine and fluids for dehydration. He now has morphine delayed release pill and morphine liquid. Have looked on line for remedies & also advice from nurses for esophagitis and dysphagia (difficulty swallowing) and found some suggestions that he has already tried without success. Was told esophagus/throat would be back to normal in 2-4 weeks; don't think he can last that long. His doctor mentioned a feeding tube which he rejects. Just read on line today about esophageal dilation done with an endoscope and balloon to expand width of esophagus. He says the only way he can be comfortable without pain is to lay down; so he spends most of the day laying down or napping. He is also extremely fatigued. Will discuss dilation and extreme fatigue with doctor next. He is also irritable due to the pain which is understandable. Would love to hear from anyone else who has had side effects of esophagitis and dysphagia and how you coped with it. He can't do this for 3 more weeks, it's too much pain and weight loss.
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