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hillham

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Everything posted by hillham

  1. hillham

    A New Chapter

    Thinking of you too, and wishing you'll find some relief. You're such an inspiration to everyone on this site. ❤️
  2. Hi Lonnie, One of the hardest parts is getting a treatment plans in place, but it will happen for you. I have stage 3 as well. Although it's indeed scary, there will be good days ahead. I was treated with chemo/radiation two years ago and am doing well. When I was diagnosed, I wondered if I could ever truly be happy again, but I'm relieved to report that many incredibly wonderful things have happened in my life over these last two years. Hang in there. Karen
  3. I did see a pulmonologist when I was first diagnosed, so I guess I should check in with him. I haven't had a pulmonary function test, but it sounds like I should. Thanks again!
  4. Interesting. I thought for sure that's what I had, but the doc just said radiation fibrosis. I sometimes have a hard time understanding what qualifies as SOB. I can run & do cardio just fine (although lately I cough like a maniac afterward). My oxygen level is always around 98. He did mention steroids if it doesn't clear up soon. I'll talk to him. Thanks for the advice. I'm glad you're doing better Karen!
  5. Thank you both so much for sharing. Really helpful. I've spent the last few months dealing with this, and had practically convinced myself that the cancer was back. I was dumbstruck when the scans came back stable again yesterday. Radiation therapy is no joke, but I guess it does the job. I've just returned from my follow up appointment where I saw the parts of my poor lung that don't work so well any more. It's a bummer, but I feel SO much better knowing that I can deal with this. We'll just have to cough all together! Oh, and Tom, thanks for saying that you worry. Such a nice thing to say. Have a GREAT weekend! H
  6. Hello all, I haven't posted in a while, but check in from time to time and often get a lot of encouragement from all the great folks here! I'm doing well. In a couple weeks it will be two years since my initial diagnosis of stage 3b Ros-1 NSCLC. My treatment consisted of four rounds of cisplatin and pemetrexed, plus 30 days of concurrent radiation. I've been fortunate that the treatments were very effective and the cancer has not returned. I am not on any medication for now. This last round of scans absolutely terrified me because I've basically been coughing on and off since December, and sometimes I have a slight wheeze when I breathe. It's like I constantly need to clear my throat. This is much worse when I lie on my back. For a while my coughing was pretty intense, but now it's mostly after I exercise. I still run 3 or 4 days a week and sometimes at the end of a run, if people see me, they think I have the plague or something because I'm hacking up a lung, as they say, which is pretty embarrassing post-covid! My oncologist says my latest scans are completely stable and the problem is most likely due to the fact that my lungs are damaged by the radiation treatment and there is fibrosis. He says air doesn't always move through my lungs properly, so it's hard to heal from a viral infection, which is what he thinks I had. Does this happen to anyone years after radiation treatment? Any thoughts?
  7. Wow, when I saw your post I thought I was reading my own story! (except for the fact that I was 51, but felt 37). I was staged 3b Ros1+ April, 2021. Last summer was spent doing four rounds of chemo (cisplatin & pemetrexed) + 30 days of trudging up to NYU Langone Purlmutter Cancer Center for radiation. This summer I've already been hiking through the canyons of Southern Utah, and now I'm in Mexico taking Spanish classes with my teenage daughter. In August we're going to Sweden for two weeks as a family. I guess I over-reacted to being healthy again, but I have no regrets. Last summer I was wondering if I'd ever be able to do the things I love ever again, and here I am. BTW, My doctors also suggested that I take targeted therapy after treatment "just in case," but the drug I took didn't agree with me, so I quit taking it. Luckily, there are other treatments and TKIs for my mutation that I hope will work for me down the road if it comes to that. I still get very nervous before every scan, but am grateful for every moment I feel well. I'm hoping your treatments aren't too bad this summer, and that before long you'll be living your life again! I'm thinking of you and everyone who is dealing with this awful disease. FINGERS CROSSED FOR YOU!!!
  8. Salem, I was also diagnosed 3b, and similar to your dad, there was no primary tumor found/identified in the lung. I've always been confused about that, but I guess it happens. I also had chemo/radiation for 6 weeks. It's been a little over a year and all my scans have been clear so far. Good luck to him!
  9. Watermelon was my savior during all that!
  10. For what it's worth, they told me my hair would fall out too (cisplatin + pemetrexid), so I was surprised when it did not. I know it must be hard losing hair because it makes you look "sick." It's another obstacle we have to overcome. I hope she can take one day at a time and find some strength. I'm thinking of her!
  11. We were trying the targeted therapy drug as adjuvant therapy. However, there is not a lot of data for my particular mutation (Ros-1) that shows that the targeted therapies will stop a recurrence. I decided not to do use it that way for now since I have no visible cancer to treat. The targeted therapies work for some people for a very long time (ten years or more!) and others have to keep switching because they develop a resistance.
  12. I am not on any treatment at the moment. All my scans have been clear since the chemo and radiation. I will certainly go on targeted therapies if my cancer returns. There are a few options, and I am told that most of the time the worst of the side effects are only in the beginning. It's also exciting to see new and improved therapies all the time. When I reacted badly to the drug, my oncologist just said that since there was no active cancer to treat, I didn't need to suffer for now.
  13. I had four rounds of cisplatin/pemetrexid, plus radiation. I was told that I might lose my hair, but I was relieved when I didn't. I didn't even have thinning. As for starting with chemo and radiation vs. targeted therapies, that was the big decision. The oncologists seemed to feel that since I was young (ish) and very healthy, they could throw the book at my cancer. They hoped the chemo and radiation would kill the cancer for good, and then I could use targeted therapies (I have Ros-1 fusion) as an "insurance policy" afterward. The chemo and radiation have been successful so far (knock wood) but I had an extremely hard time with side effects the minute I started the targeted therapy drug, so I stopped. Everyone is different. Some people take the targeted therapies and feel just fine on them. I was the opposite, and felt almost nothing from the chemo.
  14. Hi Kelvin, I am 52 years old and I was diagnosed with Stage 3b NSCLC on April 26th, 2021, making TODAY my one year cancerversary. Wowza, I just realized that fact as I was typing this, and I don't know how I could have forgotten. I'd better get to the kitchen and make a cake! Last summer I had four rounds of cisplatin/pemetrexid and 30 days of radiation with curative intent. I got through those treatments without too much trouble, except for about 10-12 days I spent with esophagitis from the radiation. I did not lose my hair, and mostly had energy to live my life as normal. I've been NED since the first scans after my initial treatment. My fingers are always crossed. The original biopsy revealed a Ros-1 gene mutation, which is very rare, but there are several effective targeted therapies that I'll be able to try down the line should I need to. You will definitely want to find out of she has any of the known mutations. For now I'm just trying to live my life between scans, working, traveling, and feeling quite good. There are incredible gains being made in lung cancer, but I understand how worried you must feel for your mom - I am worried for her too. I'm worried for all of us, but what we do is hang in there and put one foot in front of the other. I know you'll find the strength to do that! Keep us informed. K. Hillham
  15. Thanks for writing that. She was very admirable indeed, and even though I didn't know her, I always scanned this forum for her name. ❤️
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