Oceanna

Do you go to any of the Virtual MeetUps? They may be just as helpful and not as time-consuming. I know from personal experience - this cancer, past cancer, parents' cancers, parents dementias -- how all-consuming the research can be. It has taken me a long time to learn when is enough. While I enjoy research, it can get overwhelming, and you want something left to give to your Dad (which I am sure you are, but we want you around, too, for a while). I've made a very conscious effort to reign myself in and stick to what I went there for in the first place!! Ifr something carries me away afrom the target and over yonder, I'll bookmark it and return to it another time (or not). Frankly, much of what I'm researchng these days are procedures or info I've heard about at these MeetUps or from guest speakers, etc.. Sometimes we feel even more obligated when it's not about us, but about a parent or sibling. I did that with my parents ailments in their later years, too. My suggestion is relieve yourself from being the doctor, but get to know enough that you feel you can ask the right questions. And try support groups, as you are doing.

Read that report; it was excellent. And, for me, the timing was perfect. As a stage IV NSCLC, I was taken by total surprise recently while having 3 tumors at back in abdomen radiated: severe unbearable searing stabbing debilitating bone pain (turned out there was more cancer at L-4 that no one knew about). I digress. My younger sister came to the rescue (I'd been driving myself but suddenly could not move). While doing her research, I noticed something interesting. VNS (visiting nurses), my primary care doc, and a few others were pushing my sister to use hospice (rather than some other in-home care groups, private or non-profit), saying it's not for the dying anymore. I was shocked. It was like they were parroting a new ad campaign. "They've bought into it," I told her later, noting the NYorker cover story that I'd asked her to read. Still having not read the report, my sis asked my current med onc re: using hospice. My onc nurse looked at me, then back to her, horrified, and told my sister that, as it has been for many years, hospice is for those who are dying. Or is it? It is so disappointing to see these sorts of things happen. It nhappens everywhere and, I suppose, I am not surprised, but as someone above mentioned, I have looked forward to that organization help me transition into the next stage of life. I pray they will still be there, as I remember them. I used hospice for one week for the end of my Dad's life at home (he was 94; dementia) and they were caring, reliable, and everything I expected. But I see things are changing -- and changing fast. I think we're OK so far out where I am away from the cities, but I do feel we have an obligation to put this info out there, as the NYorker and you, now, have done. Thanks fo sharing, Trish in CT

Also, I am not sure (can't get this out of italics; maybe supposed to be this way) if I just CREATED another 'group' or whatever, but I intended to post this message on the Radiation Treatment forum. I'll check but if anyone knows, let me know , if you have a minute. I WILL figure out how these work.

I am NSCLC stage IV and will be having a tumor removed from iliac very soon. I am considering ablation; 10 treatments of conventional radiation; high dose focused radiation over 2-3 days; and, low on my list, chemo again. I am just becoming familiar with these options -- most of which I learned from Lungevity (!) and its bloggers, and need some input, comments, knowledge -- anything that anyone's got. Also, I've heard of "CyberKnife" and am wondering if that is just a form of high-dose that can be done by other brands. I am very grateful for all I learn on these blogs. Thanks for being here!!

ps. Welcome!

You may not know yet, but you might ask which chemo drugs oncologist plans to use and why those particular ones. I had chemo and radiation at the same time; 6 weeks radio to chest area (so it impacted my throat a bit and made it difficult to eat) and weekly chemo throughout. The 'chemo combo' used for me was carboplatin and taxol (Paclitaxel) and I weathered it fairly well. The side effects will subside once you're done. I did not lose all my hair. It thinned but I could tie it up and no one ever knew (not that it mattered!).The various chemo drugs are categorized; for example, Taxol is a "Mitotic Inhibitor," aka plant alkaloid, according to the ACS. The ACS has a good overview of the drug, the categories, and how they work, but not necessarily how they'll affect you; everyone is different, depending on age, etc. I'm 68 and gardened throughout the 6 weeks, though it did take its toll with some fatigue; just had to take it slowly but getting out and exercising, i think, saved me. A good balance, of course, depending on your situation, is usually recommended.

I am stage IV and was taking Lumakras for about a month until early April, when liver lab results went out of control. Oncologist had me stop. She may have me restart after labs, but this is what I am wondering -- has anyone else been on Lumakras (first scan did show progress eliminating tumors) had this happen to them? If so, how was it handled? (I have the G12C KRAS mutation.)

thanks so much!

THANK YOU to those survivor stories, especially you, Tom. It has given me hope. This is my first time at a blog, so bear with me!! I have stage IV, NSCLC, adenocarcinoma (non-squamous). I had (robotic) wedge resection in Jan 2020; spots outside of lung area appeared by end of year. In Jan 2021, had regimen of chemo (carboplatin and Taxol (plant-based)) and radiation (another doc - long story - recommended Carbo & Alimta); followed by immunotherapy (Durvalumab) that I stopped this week. Original spots (hilar area, etc) shrunk but some new ones appeared around ribs/chest area and lower boney area (illiac, sacrum and acetabulum) by end of 2021 (while others DISappeared). Biopsy last week on iliac spot showed it is adenocarcinoma; genetic testing on original specimen showed two mutations, for KRAS & TMB. Path forward recommendation is targeting KRAS with sotorasib (brand LUMAKRAS) that received FDA accelerated approval last May 2021. I have a million questions and am looking for forums, especially, re: These targeting drugs (especiallu sotorasib/Lumakras) Stage IV cancer Nice to meet you all!