AngelL

I was diagnosed 7/31/2020 with Stage IV NSCLC with brain mets. We live in a small town so a general oncologist here. My husband wanted to get treatment in Atlana, much bigger hospital, better doctors but 2 hours away. I argued because Im still working and had to consider my leave time at work. I carry our health insurance so.... My husband is an IT guy so he has researched constantly ( I dont so much because I get anxiety) to make sure he knows the latest treatment options, etc. He pretty much begged the oncologist to do biomarker testing because my husband said the targeted therapies work better if you havent had chemo. I felt like the oncologist got annoyed with his questions at times. They claimed there wasnt enough tissue in my original biopsy? for the testing and could only do the blood biomarker test which showed a very small percentage or no markers at all. My husband asked them to redo the test because he read its best to do the blood biopsy several times. My local oncologist never agreed. Things felt so scary and urgent I started chemo immedately. Im about to get round 9 of chemo today. I'm doing brain radiation at Emory in Atlanta. All of my brain mets went away with 1st round of raditaion but I had 12 more 6 months later which meant another round of radiation. They have set me up with a specialist there saying my immunotherapy isnt working well for my brain. The specialist I see there suggested the targeted therapies are still an option for me even after chemo? They also said there are many more options and new break throughs in science monthly. I will get a Pet scan and possibly another biopsy at the end of April and go from there. i wold strongly suggest the 2nd opinion even if youve already started the standard treatment chemo. My husband keeps mentioning clinical trials but I thought that was last option stuff? But as I said before I've avoided research and he has been deemed a Deputy Lung Cancer Specialist by our local doctors because of his extensive research on this. I couldnt tell if my Oncologist was being sarcastic, I mentioned my husbands agressive questioning of treatment suggestions haha, though because of these dang masks!

Mmmmm. Sandwiches and Ice Cream! I wasnt hungry until I read this post! Im going to have to vote for the Philly Cheesesteak No Chiz Whiz though! Real cheese for me please.

So I've just survived (barley) my 1st round of the triplet. (Carboplatin, Alimta, Keytruda) Maybe I'm being dramatic...negative...Whiney...? But how do people make it through? Especially those of you who do chemo weekly? Please tell me it gets easier? or harder so I can be prepared. I feel so bad for complaining but..... I'm set up for 4 rounds, (one every 3 weeks) and if it gets much worse than this I just don't know. Day 3 and 4 were the worst. Extreme fatigue ( I slept on the front stoop once) , awful awful body aches. And the cherry on top?! Now no food tastes good. My mouth hurts and the skin is literally falling away from the inside of my lips. My skin in general feels like I have sunburn and it hurts to touch my face (guess thats a positive with Covid) . I could go on but I'm sure you all know. This is so ...(1st world problems? ) but I think the most depressing part has been not enjoying food. I went into this thinking even if I was bed ridden that food would be something I could enjoy. Eating whatever I want, whenever and all of it because...well... but nope.... I'm too tired to walk to the fridge! So any tips on food that I may still find tasty? Anything that may help soothe my skin and mouth? .... Tips on how to toughen up because so many people have it so much worse?....greatly appreciated

I just took my 1st round of The triplet 3 days ago. Vain or not I was also diappointed by possible hair loss. But hey at least its Halloween. I will save money on a scary mask! So far Im just very easily exhausted. Hopefully this only last a few days?

I may see you around! I will be back there in about 4-6 weeks to scan and see if my brain mets have responded to Keytruda and then find out if i get more radiation or....?

Hey, thanks for the info. I did have a Guardant 360 Blood Biopsy which showed no detectable markers that had an FDA approved therapy. The markers that did show up were at less than 5%. We were hoping for EGFR but it came in at only 3.3%. Im waiting on a test for mutations from the tissue biopsy all labs are slow due to covid so both doctors recommend I start chemo and keytruda. We were hesitant because we read previous chemo would lower effect of targeted therapy if thats an option later and that the blood biopsy isnt as accurate at detecting markers as the tissue biopsy. At 2 months in I was scared to keep waiting and also scared that chemo was my only option. The inaction was driving me crazy though! We did get a 2nd opinion from a lung specialist at Emory university. One of the largest most reputable hospitals in Georgia so that made me feel a little better. 1st chemo treatment was today. Hoping for minimal side effects and positive reactions to meds.

*****Five Stars: Captivating, Adreniline Inducing (or maybe thats a side effect ofXyZ). Filled with Hope, Heartache and some much needed positive insight into an unsightly world of dismal diagnoses. The everyday life of stuffing pharmaceutical companies pockets while emptying ours at an ever increasing speed while still managing to laugh all the way to our negative bank statements despite everything. HA! Hi, New here. Sorry about your news but I enjoyed your writing and you seem to still be pretty positive which is a relief for me. Diagnosed 7/31 so Im...should I say somewhere in 2009ish? I hope to run across more of your articles. It really lifted my spirits on my way to my very 1st chemo treatment. Side effects? yay....ugh

I did get the biomarker test done. We were hoping for EGFR since it is most treatable with the targeted therapy but I wasnt a candidate for the targeted therapy. I did have 5 brain mets. They responded well to the radiation. I had one new spot on follow up MRI but all of my lesions were so small (1.5cm or less) my doctor seemed very confident about the treatment! The doctor did recommend another test be done on the biposied tissue but I cant remember what? My husband is more up to par on the science of it all. Ive honestly avoided even trying to learn it and have been in denial the past 2 months. My brain has been spinning. I can barely match my socks at the moment. (That isnt a side effect of the brain tumor I had trouble before this. HA) I'm glad I joined the group at my husbands insistence. I already feel much better talking to people who have been through all of this.

32! You are brave! I've avoided looking at stats. Luckily my husband loves research so he has been my advocate with the medical teams and has only filled me in on positive news. Ive accidentally seen some grim numbers and have avoided the subject thus far. LoL. I flip flop between thinking "I've been through a lot, I'm tough, I will beat this"! to hiding in my room/car having pity parties and thinking why me? But I'm nice?....Then I'm riddled with guilt for such thoughts because innocent children get Cancer (and worse) every day. Physically I have no symptoms so I have pretty much been in denial. The port insert was tough for me mentally. Having a foreign object in my body was an adjustment I'm still working on. Now with chemo tomorrow I figure I might as well accept it, put on my big girl panties (which is easy because mine are by no means small) and FIGHT! I'm thankful I finally admitted I needed support and joined. Hopefully I will become strong enough to also be a help others as I see so many here are!

Hello, I am 41 and I was diagnosed with NSCLC Adenocarcinoma Stage 4 on July 31st of 2020. Yeah, 2020 is going above and beyond! Anyone else my age with this here? Info on a 41 yr old with this is non-existent! I'm a married mother of 2 boys, aged 20 and 5. I work full time and also help my husband with our side business working on/selling solely Land Cruisers. Throw in a full house remodel that we are on the tail end of and all I can think is I don't have time for Cancer! I had Gamma Knife radiation on my brain within a week of diagnosis. I start my 1st chemo treatment (with an immunotherapy drug on top) tomorrow. We as a family had just finished a 10 year plan and were on the cusp of being basically debt free and planned to start having fun instead of working all of the time this year so...yeah. Thanks universe! I'm scared, I'm Angry, I'm gonna beat this, What if I don't, I'm angry, I'm scared, I'm ok...