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OBXGigi

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  • City
    Greenville
  • US State (if applicable)
    SOUTH CAROLINA
  • Country
    US
  • Gender
    Female
  • Status
    Lung cancer patient/survivor
  • Interests
    Painting, Creating, Travel

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  1. I'm so sorry to hear that happened, that is terrible.
  2. Agree but I went from stage one in the scan two years ago to scan four from the miss. They would have been able to remove the lower left lobe. I now have hundreds of tiny nodules scattered throughout both lungs and lymph nodes involved . It isn't just wasted time but the mistake will shorten my life considerably. I am just accepting it for what it is and I can't go back but I can advocate it doesn't happen again. In my case and in yours it is the radiologist that missed it. All scans are read and reported by radiologist Mine is visible to every oncology and pulmonary doctor at Duke and Prisma Health. The radiologist gave the emergency room the diagnosis reading it remotely and it was put in my chart and passed on. I am filing something against the radiologist so hopefully he does better in the future. I hope this never happens to anyone else. It has been verified as a medical error on his part.
  3. This is so encouraging to read! How long did you do immunotherapy? I showed improvement after four rounds and they took away the Carboplatin and today is round 8 with immunotherapy and Alimta. How many rounds of Alimta did you have? Does the immunotherapy give you side affects?
  4. Thank you for your help. My oncologist was looking at Enhurtu and because of my response after four rounds of the six before you could be considered, I was not a candidate. I see my oncologist today and will ask. I'm hoping since Enhertu is an approved drug for breast and gastric cancer that it moves out of the trial level pretty quickly. My oncologist main concern was the lung issues enhertu causes in patients and my lungs already have enough issues. Thanks for the note. I hadn't heard of Pozi.
  5. Thank you all for the warm welcome.
  6. I'm sorry for all you are going through. My marker is Her2 also. I had Carboplatin, Alimta and Keytruda, after four rounds they took me off the Carboplatin and I had a 50% reduction in main tumor size. I am a non smoker diagnosed in April this year with stage IV lung cancer that metastasized to both lungs with miliary nodules in both lungs and my lymph nodes near the main tumor are involved as well. I am on maintenance of Alimta and Keytruda for now, round 8 is Wednesday. Scans again soon. I'm guessing bassed on you having death with this longer you have been though this part and have moved on to a new treatment. I went to duke to look at one study they suggested but it had horrific side affects. We have also looked at Enhertu but because I am currently responding I don't think I qualify. My doctor ain't mentioned the Kadcyla. Do you have that every 21 days?
  7. I was diagnosed with stage IV NSCLC in April after having a cough that wouldn't go away and being put on antibiotics and steroids for bronchitis. My doctor was avoiding an x-ray with the start of Covid-19 but after two rounds of antibiotics I asked for the x-ray thinking it was pneumonia. The x-ray showed my lungs were full of miliary nodules and at first they thought it was likelya bacterial infection. A CT scan showed there was a tumor in my lower left lobe. A bronchoscopy revealed the tumor had spread metastasized to both lungs with the tiny nodules throughout both. The lymph nodes near the main tumor were also affected. My biomarker is Her-2 which is only found in about 2% of lung cancers. I am a non smoker and am 61 years old. I had walking pneumonia two years ago. I had no cough or signs of being sick and had a lot of chest pain. During the visit they did a CT scan and I was diagnosed with pleurisy and walking pneumonia. After my cancer diagnosis we requested the CT scans from that diagnosis and the scans and chest X-ray show the tumor and the radiologist missed it. It was stage I then. So disappointing to discover it had been there and missed. After my diagnosis in April I went to Duke for a consultation about a targeted pill therapy they have as a study. It was intense and the physician said most people drop out from the severe side affects. I stuck with the traditional treatment knowing if I complete the standard of care I can qualify for the Inhertu trial. I initially had four rounds of carboplatin, Alimta and Keytruta then scans and had a good response with the main tumor shrinking by 50%. The radiologist noted the miliary nodules were smaller in size(they are too small to measure) and there was more white space on the scan. So far it hasn't moved outside my lungs. With the favorable response I am now on what they call maintenance therapy with the Alimta and Keytruta. I have continued to have fatigue even after the Carboplatin stopped but my doctor told me at my last visit to try Ginseng capsules and I have seen a huge difference. Haven't even needed a nap which is amazing. I have my 8th round this Wednesday and look forward to my next scan. My husband is a radiation oncologist so I feel lucky to have someone with all his knowledge help me through this. He is part of the same cancer institute where I receive my care. He is a wonderful nurse as well as doctor and has taken the best care of me. I feel so fortunate that he can answer questions for me but he hasn't actually had the disease so I look forward to learning from others like me. I have only recently found this group but have connected to others since my diagnosis that have been through chemotherapy for all their tips and suggestions. I have done every proactive thing to help with side affects I could find. Overall I feel really good. I still cough as my body tries to clear what is in my lungs. My doctor had read about Neuraptine helping with the cough and I tried it back in May. It worked great for me initially and the cough was completely gone. In the past few weeks it seems to have come back even with the medicine.
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