Golfman

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.

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!

Sorry to hear about your husband's diagnosis. I've learned that every patient is different, every cancer case is pretty much unique and that sclc is a mean disease. But there's great news in the treatment world now! We have more hope now than ever before. Amazing people are developing amazing treatments! I vividly recall the Dr giving me my diagnosis. Very scary indeed. In fact, I mentally toned out her words after she said "survival is typically 2-4 months, maybe a year". Is she reading about a different patient? It can't be me! This was in mid Feb of this year. She immediately put me on the same chemo+ Tecentriq regime as your husband. I had an allergic reaction to Etoposide twice, to add to the drama, so she substituted another ugly drug. My sclc also included a brain MET. Yet another scary fact for my family and I. Chemo was not pleasant, but was tolerable. I had "bone pain" but pain pills helped. In short, chemo was not as bad as I thought, and multiple daily naps helped. My Tecentriq treatments have continued every three weeks since my diagnosis. And I now have CT and brain scans on a regular basis. Although nobody mentions "cure" they do talk about "stability" and that's now one of my favorite words. Today my sclc is stable, and my next regular CT/scan is a month away. I'm sure other patients have similar results. In short, outcomes from sclc were historically very poor. But not in 2019! Immunotherapy (and other new treatments) have completely changed that scenario! One scientist, in fact, won the Nobel Prize in late 2018 for immunotherapy work! There are also tons of other new treatments involving genes, etc. too many for me to understand. Your medical team will explore all of these. My message is that had I been diagnosed in 2018, I would have had a much different treatment and outcome. Treatment results today are much more successful than yesterday, and treatments tomorrow will be even more successful than today! Stay positive because there's a ton of good news out there!