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Found 5 results

  1. Hello. I am new here and was diagnosed with NSCLC Squamous cell type, in Sept. 2021. I am 64 years old and a very active and healthy person prior to all this I was misdiagnosed for over 9 months with Post Herpetic Neuralgia and the cancer was found by chance after my pain doctor ordered an MRI due to longstanding shoulder pain and hand weakness and a rash. A large 9 cm tumor in the apex of my right lung was found. It was not operable due to location near my spine per a neurosurgeon. Initially my oncologist gave me "months" to live and guessed my cancer was at stage IV. I started Carbo/taxol immediately but after 6 weeks (2 chemo rounds) and multiple CT scans, MRI's, a Pet scan and a biopsy, it was discovered that though the tumor was large it was isolated in the right lung with some small mets to the mediastinal and clavicle nodes but hadn't progressed as first thought. A curative intent plan was presented to me and I chose to do concurrent chemo/radiation for 6 weeks. I finished that on 1/25/21. The large tumor shrunk about 2 centimeters and the questionable lymph nodes had just about disappeared or remained stable. Just this week i pressed my oncologist about what stage the cancer is now and he said stage III. I started Imfinzi 2 days ago. My PDL-1 marker was only 2% but still an indication that it might work. (Diagnosis: 1. right apical lung squamous cell carcinoma, involving the chest wall, ribs and T1-T3 vertebral bodies. PDL1 2 %. STRATA next generation sequencing showed PTEN, CDKN2A, MLL2, MLL3, TP53 mutations and MYC amplification. 2. Pancoast syndrome) I am feeling great! Shortness of breath (SOB) is the only issue keeping me from doing all I did before this happened. It looks like I have a couple areas of my lung that are collapsed Question: 1. Does the SOB get better over time? Is there anything I can do besides breathing exercises to help? 2. I have yet to find anyone with similar biomarkers to mine. Anyone? 3. What is the difference between the ways that tumors are staged? Prior to treatment my radiation oncologist staged me T4N3 which I know refers to the tumor size ""T" and "N" 3 lymph nodes involved. How does this correlate with Stage III? I hope I am making sense. LOL! 4. Could my tumor continue to shrink with Imfinzi? I have a very positive outlook and a strong faith base.
  2. Hello, I am a 61 year old male, recently diagnosed with Non small cell carcinoma. I decided to join this forum because I have some questions after studying different sites regarding lung cancer. This is my first question: What does Standardized Uptake Value of 6.5 with an average of 3.5 mean? How are the numbers defined? Thank you!
  3. I am Sandra. I live in Phoenix,AZ I was diagnosed in January with Stage 4 small cell lung cancer. My x-ray showed my mass is 5". My oncologist admitted me into the hospital for my first chemo round. I had my first Pet Scan in Feb, it showed my cancer spread to my lymph nodes , liver. I had an MRI and it showed lesions in my brain. She put me on short term disability. I was out of work for 7 weeks. I am still going through Chemo. I have 2 more rounds out of 6 to go, then another pet scan and then I will find out her plan. A few weeks ago I had another pet scan, it showed progress in my lymph nodes and my liver, but not my lung I sill have a mass and an infection on my lung. I am a little scared what the next plan will be after my next pet scan. For 10 days I took an antibiotic. I still have the darn cough. Months ago I lost my voice, it is coming back slowly. I have the chemo side effects and the weirdest thing is the weekend before my chemo treatment I get really bad cramps on my butt cheek so horrible I cry for days. I told my Dr, she thinks it could be not enough electrolytes. I have been back to work a month now. I am still tired every day, I get tired walking but I make myself do things and of course some days are better than others. I had to come back to work, being home was driving me crazy and of course financially. I have a great support system, my boyfriend is the best, my family and friends. Sorry for going on. That's some of my story. Sandra Z
  4. Hello, new to the forum, but 15 months into Stage 4 NSCLC, with NED at this point. Been on targeted therapy (Tarceva) for 14 months, with excellent results. But I'm being worn down by side effects. And my onc told me last visit that even though I am NED I need to stay on the targeted therapy drugs to prevent the cancer from recurring. For the rest of my life. While I am grateful I did not have chemotherapy and the awful side effects of that - I can work, I can modestly exercise, and do regular daily activities - I still detest the side effects and hate the fact I'm stuck taking "poison" to stay NED. My skin rash is only controlled by doxycyclene in high doses, which makes me uber-sensitive to sun so I stay out (a tragedy for me, maybe not others). I'm learning to live with my hair looking like a pile of pubic hair on my head. I've learned to "time" my GI distress and know what I can get away with and when. But what I worry about most is what my onc says will be "long-term effects of toxicity" with the targeted therapy drugs. He told me I'll soon have to begin monitoring for heart disease and liver disease. Other system failures/diseases will have to be watched. He reminded me that that is why he said, at the very beginning of my diagnosis, "you're life will be shortened, but that does not mean you'll be gone tomorrow, or even 5 years from now." Okay, that's bad enough, but maybe my psyche is getting to me. I swear my joints are giving out on me. I cannot sleep at night due to pain in my hips, knees, ankles and shoulders. I've severely cut back on running - can only walk now. I've mentioned that to my onc - he said that's hardly likely caused by the meds and I should go to my regular doc for resolution of this problem. My head is completely messed up. How can I be thankful for the life I've been given through these awesome targeted therapies, and yet curse the long-term effects. And is it "causing" a mental sense that my joints are affected? I'll go to my regular doc, as suggested, but just wanted to know if others go through the same thing?
  5. Hi, my name is Mary and I have stage 4 BAC Adenocarcinoma which is a rare type of lung cancer. I was told only 3% of the population suffer from this. In June of 2015 I had my middle lobe right lung removed. At the time the cancer center I was going to said it was Stage A 1 and I didn't need any chemo or radiation . I had a weird feeling and went to one of the top hospitals in Phoenix. They put me through all kinds of tests and afterwards I was told the original diagnose was wrong ( NSC adenocarcinoma ). That's when I was told it was BAC Adenocarcinoma stage 4 since it reoccurred . It is not from smoking, and it is a recurring type of cancer. I went through Proton Beam radiation , and now chemo. Already I have another nodule on my lung. I am looking forward to meeting others going through this.
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