acejj75 Posted August 8, 2016 Share Posted August 8, 2016 first time... My 69 year old mother was diagnosed with limited stage small cell back in Dec 2015. She received chemoetoposide plus cisplatin(every 3 weeks/ 3 days in a row) plus radiation in April. She was very ill during the whole process but it was successful. In June she start have issue with balance and the did a scan on her. Unfortunately, they found 17 spot and 3 tumors over 1.5 cm in her brain. They immediately did 5 rounds of whole head radiation and now we wait and see, the doctors gave her 6 months. My question is what am I to expect, currently she is the best she has since this whole thing started. is this now considered extensive stage? How long do I really have? What are things I should be watching for? Any advice is welcome Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted August 8, 2016 Share Posted August 8, 2016 Acejj, I can't pretend to know how you are feeling. I never had a loved one suffer from lung cancer. I was the patient. I know a little about small cell. My understanding of the two stages is limited stage can be treated with both radiation and chemotherapy while extensive stage is normally treated by chemotherapy alone. What can you expect? I can only guess. Likely a scan a couple of weeks after radiation to gage its effect. Perhaps more chemotherapy. Certainly you, your mother, and the rest of your family have important decisions to make. I've told my family that if my cancer ever gets out of control, I don't want to go down the path of curative treatments. I prefer palliative care to eliminate pain and symptoms. Curative chemotherapy is very hard to endure. I've also instructed them to admit me to hospice as my discomfort increases. I'd rather my life be lived out in relative peace surrounded by family than in a hospital connected to tubes and pumps. This is the kind of decision your family should be discussing. How long do you really have? God only knows. I know survivors who were admitted to hospice and were discharged because care was unneeded. Granted, not many but I've spoken to several. I've lived 12 years beyond diagnosis and after multiple failed surgeries left me on the edge of life for months. I'm here. Who knows how much time any of us have. What is important is what your mother does with the time she has. Advice? Don't mourn before its time. Talk to your mom and acquaint her with her treatment options (more curative treatment, palliative care, or hospice care). Spend time with her. Read about small cell lung cancer here - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer/small-cell-lung-cancer Your reading might help your mother make informed decisions about her future. More questions? Ask away. Stay the course. Tom LaurenH 1 Quote Link to comment Share on other sites More sharing options...
acejj75 Posted August 9, 2016 Author Share Posted August 9, 2016 Thank you....I have been done this road before with my husband. He was diagnosed with stage 4 Hodgkins and has been remission for 10years. With my mom everything is different. At this point chemo is not an option and like you if it spreads outside of the brain she does not want anymore treatment. Ever since the doctor told her she seems to be in hyper drive to get her things in order, including giving everything away. I had a talk withbher tonight to slow down and enjoy what ever time you have with us. Hopefully she will start thinking she can beat tge odds. thank you for listening Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted August 9, 2016 Share Posted August 9, 2016 Good morning, Acejj75, I am very sorry to hear about your mother's diagnosis. She is fortunate to have you as a daughter and experienced caregiver. I am glad to see that you've talked to Tom. He is a great source of information and he's a very compassionate person. He made some excellent points about focusing on how you and your mother want to spend the time you have together. In addition to LUNGevity's SCLC resources, I wanted to share the link to LUNGevity's Caregiver Resource Center with you: https://www.lungevity.org/support-survivorship/caregiver-resource-center. On this site, you'll find ways to find tips about working with your mom's healthcare team, finding emotional support, and other practical resources. If you're comfortable, please continue to post updates and feel free to ask questions in this forum or any of the other topic-specific forums. There is a small cell lung cancer forum, where you may be able to connect with other survivors and caregivers who have been on a similar path as you and your mother. We are here for you. Lauren -- Digital Community Manager LUNGevity Foundation Quote Link to comment Share on other sites More sharing options...
Guest Posted August 9, 2016 Share Posted August 9, 2016 Hi, I am extremely sorry to hear anything like this. I am new to this forum and coming to find info myself, but I will tell you things I would do if in that situation. If you are looking at conventional treatment ONLY, considering contacting this person. I am in NYC and listen to his radio program a few times a week in my car and always said if I had cancer and wanted standard treatment I would go there, the place is called RadioSurgery New York, you can speak to them on the phone or ask for info to be sent to you, whatever is most convenient for you. If you are looking into alternative run a search on Bailey O'Brien and contact her for guidance, she would be my choice also. Hoping the best in whatever path you choose. DO NOT GIVE UP, one other option that lots of alternative people have used is juicing 5 lbs of carrots daily and drinking it, no less than that, not hard at all, I just bought a Champion juicer for myself. John Quote Link to comment Share on other sites More sharing options...
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