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Golfman

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Golfman last won the day on December 27 2019

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  • City
    Wheaton
  • US State (if applicable)
    ILLINOIS
  • Country
    USA
  • Gender
    Male
  • Status
    Lung cancer patient/survivor
  • Interests
    Golf, walking, all sports (mostly just watching now)

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  1. Golfman

    Recurrence

    Thank you, Jesse, for your kind words. They lifted my spirits.
  2. Golfman

    Recurrence

    I agree, Tom. I often even play some holes on familiar courses in my mind while in scans, infusions, etc. And when I'm not feeling well, I'll ride along with my buddies as they play. Maybe I'll just chip or putt or something, until I'm feeling better. The game is a great stress reliever indeed, if you use it to your advantage. Just playing through
  3. Golfman

    Recurrence

    Thanks for asking. All’s good so far. Scans show stability and and even a little shrinkage in some lung and liver nodes, after 2 lurbinectedin treatments. I continue with fatigue issues, so I just go with the flow (nap). My oncologist seems pleased. My attitude hasn’t changed, and I can’t wait for golf season. Those smart scientists will, no doubt, continue to produce more solutions for this nasty disease.
  4. Very sorry to hear about these side effects. Our prayers are for your dad's fast recovery.
  5. Golfman

    Recurrence

    Thanks to all of you for your support! My first infusion went ok. Fatigue and GI issues rule the day. I take pills for the latter, and am working on becoming a real pro at sleeping. Staying awake is sometimes difficult. They're doing blood tests weekly and all's good so far. I've had no big pain issues yet, and try to get out as often as possible. Even did a wee bit of shoveling snow. My Oncologist said that they would go back to Neulasta if white blood cell count problems occur. Thanks, Fox, for your info on lurbinectedan. Also, It sounds like your dad is surrounded by love from you and your mother. That's outstanding! I'll ask my Oncologist about subtyping tomorrow.
  6. I was diagnosed with small cell lung cancer in Feb, 2019. I had lung lesions and a brain met. I was given 2-4 months, "maybe a year". The Dr started me on chemo and immunotherapy (Tecentriq) immediately. Went through many rounds (4-5?) of chemo since then. I'm now in a "second line" of treatment involving yet another newly approved chemo drug (Lurbinectedin). While some minor side affects appear, the fact is that I'm still enjoying the heck out of life. For me, chemo will never stop. What amazes me is that we have some brilliant scientists working on solving this nasty cancer disease. And they're bringing out new stuff often. For example, neither of these drugs were approved for sclc before I was diagnosed. Awesome, when you think about it. Finally, I was informed that my immunotherapy lost effectiveness in May or so 2019. Recently, it has spread to my liver, but my brain is disease free. So "regular" chemo seems to have done the trick so far for me. Now it's up to the new stuff. All I can add to your situation is that each individual cancer case is unique, even if the disease is the same. So generalizations are usually incorrect. Second, a positive attitude helps. If nothing else, you feel better. Mostly. Third, keep asking questions. You never know what scientists will roll out tomorrow.
  7. The folks here have given sage advice, but I think you've got the correct plan-manage her symptoms with lots of love and support. You are in our prayers as well.
  8. Golfman

    Recurrence

    Discussed all of my options with my Onc as we looked at my detailed history. This showed that Tecentriq lost effectiveness toward the end of my first year. My sclc was then held in check by Taxil. So, it's onward with this saga. Thanks to all of you for your support and advice.
  9. Golfman

    Recurrence

    Thanks to all of you for your encouragement. Luckily, my earlier chemo with Tecentriq stabilized it for 2 years. Then I picture the cancer as becoming immune to my immunotherapy. So now we'll be killing it with the new chemo. No holds barred. We'll kill it, stabilize it again, and press onward. One infusion every three weeks. My understanding is that lurbinectedin is a new second line that seems to be better tolerated. Thank you, D iane. I've posed your question regarding repeating my first line treatment to my onc. and am awaiting her response.
  10. Golfman

    Recurrence

    As background, I was diagnosed with Stage 4 SCLC in Feb 2019. Really, a death sentence. They immediately began chemo and included the newly approved (as of January) immunotherapy drug Tecentriq. Several (3?) rounds of chemo later, I was doing pretty well. Had two pretty nice years. Of course, I had the typical side affects, but really enjoyed myself. Recent scans have shown that this disease has now spread to other locations (i.e. liver and maybe brain, pending a brain scan). On the positive side, I've enjoyed the last 2 years. Probably would not have had them had those smart researchers (Dr Allison) not invented Tecentriq. I'll soon begin new chemo treatment featuring Lurbinectedin. Has anyone had experience with this treatment?
  11. I was diagnosed in Feb 2019. Had a brain MET and some nodes in the lining of my right lung. It happened very fast. One day I'm shoveling snow and feeling good, next day I'm wondering what the heck happened and my life changed. I experienced shortness of breath, so they did scans and a thoracentesis (draining fluid from my chest), a biopsy, then they gave me the news. SCLC. They immediately put me on chemo with carboplatin, etoposide and tecentriq, which was recently approved for first line treatment. They found that I was allergic to etoposide, so they substituted paxlitaxel, and I still have weekly infusions of it to this day. One of my doctors suggested whole brain radiation in May, but we refused. Then the brain MET disappeared, which I think was due to tecentriq, but no one knows for sure. Only God knows. It's gone. For now. Paxlitaxel side effects are not pleasant, but I can still play some golf. I'm now a frequent flier at the cancer center and still not an expert on this disease. There are so many things going on now in research that I could never keep fully up to date. I rely on my medical team to be the experts, to be up to date on SCLC and to do their thing exceptionally well. I ask tons of questions and still make the final medical decisions. But I think the most important aspect of this disease is attitude! Positive or negative, that's the only thing I can control. I see some patients who are so depressed they make me feel depressed. That's not a good way to go through this thing. I've experienced this depression and can say that it's really ugly. I've even heard that negative attitude can affect not just the patient but also the disease. So I'm in charge of my attitude and rely on the help of family and friends to keep me positive. Avoid negative crap always. So that's the extent of my SCLC experience. I suggest that patients and supporters stay focused on positive attitude. Do whatever is necessary to keep your wife's attitude positive. That's a very, very tough task, maybe even tougher than the treatment of this disease.
  12. Sorry for this added message but thought it to be important. It was suggested that I undergo full brain radiation in May due to my brain met. However, my brain scans showed the met decreasing in size from my diagnosis in February. I asked lots of questions, and the final decision was not to undergo that procedure unless it was absolutely necessary. It turned out to be the correct answer for me. I'm thinking a brain scan is a serious procedure. Scans will give you solid proof that the procedure is absolutely necessary.
  13. Sorry to hear about your diagnosis Wendy. I was diagnosed with sclc in February. I had tumors in my lung and one brain met at that time which was about 1/4 to 1/2" in size. They said every person and every cancer case is unique, so it's impossible to predict how long a person will live. Only God knows. They told me that mine was stage IV and typically a person like that may live 2-4 months, perhaps a year depending upon treatment. I've since heard that some people lived many years after being diagnosed with sclc. I was put on a chemo regime that included an immunotherapy drug named Tecentriq. I've had infusions (through a port in my chest) of Tecentriq every three weeks. My most recent CT in December showed that the brain met has all but disappeared, but my lung tumors are beginning to grow. I'll probably include radiation into my treatment plan going forward. Sclc is a nasty foe, but one that can be fought, and that's our job as patients. Use every tool you can to fight it, beginning with knowledge. Research the heck out of this disease, using the internet and most importantly from your health care team. Ask questions. Always. Of everybody. Take charge. In short, make yourself an expert on this disease and its various treatments. Also make note of any cancer experts nearby or available to help. There are amazing people developing new treatments, so in my opinion the future is brighter now than ever before for sclc patients. And there are some great folks on this website who will, no doubt, be sharing their knowledge. I'm a rookie as well, but what I've learned is that knowledge and a positive attitude are key elements in this battle. Good luck as you begin the battle!
  14. Yes! NED is possible on immunotherapy. In Feb, 2019 I was diagnosed with SCLC which included a brain MET of approximatley 1/4-1/2" in size, very clearly shown on scans. I went through chemo which included Tecentriq and have been on an infusion schedule with that immunotherapy drug every three weeks since. Subsequent scans show that tumor getting progressively smaller, until the latest scan showing it completely gone. Amazing! I am a believer!! We are really blessed to live in these times. I'm scheduled for a chest a scan soon and hope to see the same results, but am extremely pleased with immunotherapy.
  15. Glad to see that treatment is underway. I recall my feelings during my first chemo round: scared (since I had no idea what to expect), worried (even the word cancer make me so), curious (what the heck is going to happen to me). What really happened is that I had some pain and became very tired. Pills solved lots of the pain issue, and the couch became my best friend. I've heard some have GI issues, headaches, etc. but not all do. Like your husband, I'm lucky to have my wife to help me through the process. I think keeping active is a very good idea. I remember the Dr telling me to wear a mask since chemo messes up the immune system. I'm not a good patient and did not wear it on one occasion-a very bad/dumb idea. Caught a terrible cold/flu thing. So my advice is to follow the orders exactly. Lots of water, mask, stay away from sick folks, etc. Keep up the positive thinking!
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