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Found 11 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. Hi. I’m new. My husband & I moved to a new city a year ago excited about being empty nesters as out last of 4 kiddos went off to college 2 years ago. a couple of months later he had major stomach issues & had to have emergency stomach surgery, but when did scan they found he had stage 4 metastatic lung cancer. Gave him about a year & 1/2, maybe 2 years to live. we have been on a hell-ashious journey Ever sense. I’m working hard to stay as healthy as I can, emotionally through this craziness, emotional rollercoaster that blindsided us. And that is what led me here. Ive been looking for, “my people” who understand. B/c God love my friends, they don’t & I hope they never have to. Yet I need someone who does. Love & hugs to all on this treacherous journey. God bless.
  3. Hello! Need to interact with people who are in the same boat as I- diagnosed last February,had 37 treatments of radiation and 5 chemo. Pet scan in July revealed nothing but scar tissue. Pet scan in October revealed that either itdidnt go away completely or reoccurred. Now I am have way thru with another 16 radiation treatments, more targeted this time, and 5 more sessions of chemo - every 3 weeks, much stronger dose than last time. Had my first chemo last Friday. Had the injectable on body Neulasta last Saturday. The Neulasta has really kicked my but this week with muscle and bone pain, so bad that I asked for prescription pain pills. Today was the first day in the last few days that my pain is around a 3. It has been a 7 or 8 this week. The doctors are still talking “curative” for my cancer, so I am hopeful. I had very little side effects with the first chemo, didn’t even lose my hair. With this chemo, I just generally feel yucky, but so far still have my hair after a week. I’m not too worried about losing my hair if I do however. Thanks for listening!
  4. hello everyone, I am 65 year old male living in Ireland. I was diagnosed with stage 4 non small cell in June 2018. I was diagnosed in June 2018 and was placed on Tarceva 150 mgs daily. I have fond the contributions here very interesting and informative. The cancer had spread to my liver and backbone I got the skin rash within days . I was placed on minisol twice daily by the team and an antihistomine for the intense itch. I have been into s[port all my life and went back to walking on my treadmill and a sedate form of yoga. Following a medical review in August I increased the exercise level to speed up my metabolism to get rid of the various substances from my body. I felt I was improving a lot and in a ct scan at the start October the consultant told me the cancer in my lung had reduced about 25 per cent with a reduction of around 15 per cent in liver and 10 per cent in backbone I have found exercise and a high fibre diet to be very helpful and I attend cancer support twice a week for stress management My hair is very fine, and I have hives and an itch from time to time. I didnt get the diahoriea and seem to have avoided other side effects at least for the time being
  5. Jan 2018: bad bad 3-4 wk cold, turned into dry cough Feb: was told probably pneumonia, 2 different antibiotics, x-ray showed large fuzziness in upper lobe left lung March: felt better and went for follow-up x-ray at end of month, #!%& fuzziness identical to previous x-ray early April: CAT scan, PET scan strongly suggest cancer, but I have an autoimmune disorder which could look like cancer on both kinds of scan mid April: mediastinal lymph nodes biopsied, NOT CANCEROUS, late April: fun in the pacific nw early May: Lung biopsy to be sure, YES cancer, adeno carcinoma (s...t) late May: lobectomy for upper lobe left lung containing 6 cm tumor, 2 lymph nodes positive for cancer early June: brain MRI shows three lesions, one near brain stem late June: radiation, start chemo So far 4 rounds of chemo with carboplatin, alimpta, keytruda. PET scan just before #4 chemo showed "near" resolution. Another brain MRI in a few days. I'm 64 yrs, (soon to be 65) and smoked for a few years as a teenager, and quit when I was 18. Worked as a bench scientist, parents were heavy smokers. I have a BRCA1 mutation and so would not have been surprised to get breast cancer.
  6. Hi everyone! I love meeting new people, but really would prefer not to be joining this particular club. :) I'm 45; my husband, Lou, 49, never smoker, was just diagnosed with NSCLC after a biopsy yesterday. Surgeon suspects stage 3 but we are waiting on final results early next week and scans midweek for staging. I don't have to tell folks here - it's super crappy. We just got married a year ago after dating for 9; he is the best guy ever and all he wants to do is take care of me. His mom passed from liver cancer like 12 years ago (caught late, she went fast, chemo was horrible) so they all have really negative models for how this goes. Lou has known tons of people to die from cancers or treatments for them. I am in shock. Last month we were doing 35 mi bike rides and getting ready for running season. He developed this persistent cough about 6 weeks ago with no other symptoms, and finally went to the doc on July 6. They gave him allergy meds but told him to come back the next week if it wasn't better; he did and they took xrays on the 16th, ct scans on the 17th, and we were in a surgeon's office on the 20th scheduling a biopsy. That happened yesterday. We had been given hope that it was likely to be lymphoma or even a sarcoid, and actually didn't even expect to get results yesterday, so they rather knocked the wind out from under us. Compounding matters is that the bronchoscopy has made the cough worse, so he's feeling even crappier. And on top of that, we were given this pretty concerning news yesterday, with the (wonderful) thoracic surgeon saying she wanted scans stat, but left to wait through the weekend with little other news, and scans not scheduled until W and Th for the MRI and PET respectively. (I tried to get them moved earlier but to no avail....I am hoping that when we get official biopsy results Monday, we may be able to get the scans expedited a bit.) I am also going to ask if the physician is aware that they are scheduled so far out, given her implied urgency yesterday. It's a tough place to be, waiting through the weekend. I'm a college professor, so I'm also trying to figure out whether I should take a leave of absence in the fall; fortunately I only teach two classes, but one of them is scheduled to go abroad over thanksgiving. They also sent out bloodwork for the most common genetic mutations, so we hope to get that Mon or at the very latest Tues. We are hopeful on that front because he's half Japanese, so we know that given his age and heritage, a mutation is very probable. I am hanging many of my hopes on that right now, as well as on his overall good health. But he's so tired of coughing, and so tired period, and having GI issues (which may be in part due to stress but are leading to fatigue and weight loss) that I have to say it is very scary and I sometimes think I cannot wait another DAY to see an oncologist. At any rate, that's a lot of info. Looking forward to finding hope and community here. Thank you all for your presence!
  7. Hi all! My name is Jean, I live in West Valley City, Ut. West Valley is actually part of, and on the west side of Salt Lake City. I was diagnosed with stage IV NSCLC of the left lung on September 29, 2017. I feel like the past 3 months have been a truly scream inducing roller coaster ride in the dark! I'm sure you can relate. But as a plus, I am very fortunate to live near and get treatment from The Huntsman Cancer Institute. As of this date I have just received my 4th chemo treatment, with the out look that number 5 MAY be my last. But, if I end up having 6 I'm OK with that. I'd rather do a little "over kill" than stopping short of the goal my Doc is working to achieve. In the next couple of weeks I will be: having my 8th Thoro Centesis (yes, 8th-Ugh), a CT Scan as well as an MRI. (Not all on the same day, thank goodness. LOL) Then within a couple of days I'll see the Doc and afterwards get the 5th chemo. I was initially told I had cancer by the Pulmonologist at the hospital, WHILE I WAS COMPLETELY ALONE! Not only did the Doc not wait for my hubby to be present, he didn't even ask if I had family or someone to be with me. The Oncologist at the hospital came in next, and basically did the exact same thing! GRRR!! What the heck happened to a careing bed side manner let alone "do no harm"??? My hubby was totally PISSED to say the least. He told the nurse he wasn't taking me home or otherwise without BOTH doctors coming back and talking with him. As hard as it is for the Docs to deliver that diagnosis, I don't understand their callous manner. EVERY patient deserves compassion, especially when being given such life changing news. diagnosis,
  8. 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!
  9. 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
  10. 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?
  11. 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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