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Showing content with the highest reputation since 06/28/2020 in Posts

  1. 2 points
    Lisa Haines

    Husband restarting Chemo

    Tracy, This is very interesting and I'm so surprised to read that a Stage IV patent was able to have surgery. I've always been under the impression that Stage IV was "NOT" considered operable. This is the first time I recall anyone having surgery at Stage IV! WOW!! I was Stage IV myself and went for three different opinion as was told by everyone that I was not a surgical candidate and I always thought it was because of my Stage. Maybe it's was more to do with the location of my tumors and the fact that I also had a brain met? Thanks for sharing, I'm totally shocked!
  2. 1 point
    Hey Ladies, I was thinking the same thing this morning then I went out for a walk and came back with a very different perspective. I am still standing! Even with a Stage IV lung cancer, I’ve now survived longer than some with other “treatable” diseases. My heart did break when the media reported the Travolta family elected to keep the fight private, I can only imagine the love and support would have poured out. Lin’s got it right. Faith over fear.
  3. 1 point

    Fear about my mum's next scan

    Thank you so much Tom; you replied to one of my previous posts and gave me a lot of positivity. The doctor said to my mum not to worry too much about the scan. Maybe that's why they're doing the PET scan, because the tumour size isn't the main indication of progress especially if there's pseudo-regression. Its reassuring to know that durvalumab has good outcomes. My mum asked the doctor a lot of questions about it, but he didn't seem to know much. Is this because immunotherapy is still a relatively new treatment? Again thanks so much for your answer! Your story is incredible! 16 and a half years ago treatments for lung cancer were so limited, so it's incredible that you were cured!
  4. 1 point
    Tom Galli

    Fear about my mum's next scan

    Welcome here! First off, durvalumab is good stuff! We have perhaps the most complete survivor-authored resource on durvalumab anywhere. Read through this material to learn about how it works and how to deal with side effects. You are right, scans are needed to assess progress, and I do hope in your mother's case that progress comes in the form of shriveled up former tumors. We all worry about scans. I've been no evidence for disease (NED) (our term for "cure") for 16 1/2 years, and I still receive scans and endure scanziety--our word for worrying about scans. Pseudo regression is real and occurs in the first several scans after starting immunotherapy. The swelling happens as a response of the immune systems attack on the cancer cells and it is a very common condition. Staging is only important at diagnosis because it drives treatment decisions. Physicians do not normally recast stage numbers after treatment. If the treatment works then we are termed NED. It it does not work, we received additional treatment but in either event, the diagnostic staging is not adjusted. Your mom and I share a diagnosis (Stage IIIB NSCLC squamous cell). I do hope we also share a common outcome. Stay the course. Tom
  5. 1 point
    Hi @ChiMama. I had none robotic VATs in February 2019. The surgery was not as bad as I imagined it would be and I've made a full recovery with no follow up treatment. My lung capacity returned to pre-surgery levels. I have some residual discomfort, similar to what you describe from your biopsy, but it is manageable and still decreasing. You've gotten great advice from Lou and some others. You will do great.
  6. 1 point

    Husband restarting Chemo

    Tracy: Best of luck going forward. A lot has changed and more options are available. Also Moffit is ranked No 8 in the nation so they must know their craft. Thank you for clarifying. Gary
  7. 1 point

    Husband restarting Chemo

    Hi Gary: Of course this was all 9 years ago. We were surprised too, also, the first surgeon had left Moffitt so perhaps that played into the decision as well as the tumor shrinkage From chemo. I know that his case was reviewed by “the board”. All I know is first surgeon in May 2010 it was a no go, but in January 2011 second surgeon it was a go. Different board, change in “rules”, tumor shrinkage, or we got lucky. Not sure we’ll know why, but so very fortunate the past 9 years. Now we start a new battle where surgery is definitely off the table. Here’s to getting the answers to your questions. Tracy
  8. 1 point

    I know I have cancer

    I have come to terms with having cancer and definitely will fight it but it seem like it's all I can think about and its consuming me. I have to figure out a way to stop this.
  9. 1 point
    Lisa Haines

    I know I have cancer

    Dear TBaker, Please know that each and every one of us felt exactly how you are feeling know when we first learned for our cancer diagnosis. it was very overwhelming for me to be so sick so suddenly with no warning? I only had two days of what I first though was "Vertigo" and on the third day ended up learning I had a brain tumor and was quickly in an ambulance on my way to a Neuro Unit at a large hospital. I spend a week then and went through more tests that I can remember but in in the end I learned I have Stage IV Non Small Cell Lung Cancer, a brain tumor (a met from the Lung Cancer and also a Pulmonary Embolism). I was devastated and thought for sure my days were very limited. I still remember spending a lot of time online trying to "Google" info on Lung Cancer and statics (big mistake) because I've now learned that Dr. Google is not very good and has a lot of out dated and incorrect data. I wish I had been as smart as you and immediately joined a large established Lung Cancer Group, like LUNGevity. I didn't find LUNGevity until months into my journey and it would have helped me SO much if I had found it early, as you have. You've come to a wonderful group, full of very kind, caring and supportive people -- many of which are now long term survivors who are doing well. If you had told me back in 2015 that I'd be alive today and doing what I am now, I never would have believed it. I've come so far and I'm so happy and feel very lucky. But, I can also say it's not always easy and there will be good days and not so good days and lots of ups and downs. But, I also knew that I wanted to "beat it" and I made up my mind very early on that I was going to do just that and also live each and every day to it's fullest. I wish YOU the very best and hope you'll find comfort and support her and also from your family and friends. Please reach out and know we all care and we really do understand. Sincerely, Lisa
  10. 0 points
    Lin wilki

    Broken ribs?

    I have bilateral rib fractures. I believe my osteoporosis got worse from steroids from chemo They aren’t healing since I keep coughing! Not fun
  11. 0 points

    LC Mistaken for COVID

    I spoke to one of my long time clients a couple of months ago during the peak of the COVID pandemic in NY. She was having an issue in her home that I helped her with it via Facetime. At the time she said that she believed that both her and her husband had COVID. They were both in their 70's and I was concerned for them. She said they were not feeling well, had symptoms of COVID but hadn't been tested. At the time in NY the common practice was if you exhibited symptoms you were assumed to be positive (testing was hard to come by) and asked to quarantine. Her symptoms didn't improve for over a month. She finally convinced her doctor to see her. It turned out the symptoms were from very advanced lung cancer. She passed this past Sunday. She was a really kind and generous person. I was not terribly close to her but her passing really hit me kind of hard. I really hate this disease. I also hate how difficult COVID is making getting treatment for it for some.
  12. 0 points


    My short lived victory-just received the printed report from the CT last week. Doc was asking me about my rib issue that showed healing on previous report and mentioned again on this one. Have come to the conclusion that I probably broke it coughing when I had pleurisy. That was the 2nd rib. Now it states I have developed sclerosis of the third rib and could represent sequela prior trauma and attention on follow up exam is recommended. So of course I look up all this and find it could be a metastasis? I can’t wait until November and emailed the radiation oncologist to look at it. Of course I will call the oncologist tomorrow but she really wasn’t too concerned. anybody ever see this wording on a report?
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