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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!
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
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?
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.