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Who has Small Cell Lung Cancer?


MyWifeSCLC

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Hi Steve!

Im with you. My dad is battling SCLC. We got a clear scan of his chest/abdomen last week but this past weekend we learned he has metastasis to the brain. Another bump in the road...radiation starts tomorrow. Praying for your wife! We’re in this together. 

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Agreed. I get crap for saying this, but I think it speaks volumes that just about 85-90% of those that post on this site are NSCLC. It is the same on Team Inspire website. My husband is at 18 months with ES SCLC - with brain mets, developed MAC disease, and had a RUL wedge resection to try and remove some of that MAC infection. He is doing ok, but I am constantly waiting for the other shoe to drop. The cancer is NOT gone, just stable. He now has another cavitated tumor growing again per his last scan in July - just watching right now because he refused to do anything about right now, because he is asymptomatic. And he preferred to not have "maintenance " treatment. The immunotherapy (Tecentriq) he received actually caused the MAC disease, so he is not interested in that again. I am a realist, and I know at some point this will rear it's ugly head. Don't get me wrong I am grateful for every extra day - but that is what it is just "extra" time, which brings little comfort to me and his children. 

 

I do wish and hope for the best for your wife and your father

 

 

I do wish and hope for the best for your wife and your father :)

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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.

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Wow, thank you so much for posting and letting us know how you’ve come to far since your diagnosis. It definitely gives us hope that our loved ones can do this. My dad is definitely dealing with some depression, which he isn’t really attempting to tackle. But that’s what depression does to you. My sister and I are just reminding him every day to keep fighting and keep showing up for himself. I’m definitely going to share your story with him in hopes it gives him some more hope. 

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I have Large Cell Neoecrodin Non small cell lung cancer.  It supposedly acts much more like SCLC than NSCLC and has the same first line treatment.  So I tend to follow this forum the most. Had lower right lobe removed, Chemo (cis/etp) and adjunctive radiation. I should be NED.....will find out soon enough.

As for depression, I just finished treatment last week and almost immediately went to a dark place for a solid three days.  By far the most depressed since all this started in January.  Yesterday was the first day I felt mentally better since last week. No idea why, just glad the cloud has passed.

Wishing you all the best

Peace

Tom.

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4 hours ago, TJM said:

As for depression, I just finished treatment last week and almost immediately went to a dark place for a solid three days.  By far the most depressed since all this started in January. 

I kinda think there's always a letdown after a big effort is finished. I'm a retired prosecutor and I used to feel that way after I finished a trial and the jury was out. It's like you've done all you can, and there's a sense of being at the mercy of forces outside your control, after a big push giving it everything you've got.

Glad you're feeling better--I think it just takes time to adjust to not having to actively battle.

 

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I think that there is nothing wrong with feeling negative at times, if that is how you feel. No one should be made to feel bad for that.  I am not a believer of your attitude can fix this horrible disease. Not that I think there is anything wrong with those that handle their situation that way. You should do what works for you. I think people do their best, and sometimes it’s ok to be down. Sometimes its ok to ask why me? Because facts are facts, and not everyone will have a good outcome. I am thankful, but positive, no. Hope for the best, but prepare for the worst is how I handle it. 
 

Not trying to be a downer, but as a person that visits sites for information and to read people’s stories, I personally prefer a more realistic view and approach. 
 

I hope you all and your loved ones continue to do well. 
 

😊

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