New here: Looking for others who have NSCLC and information

One additional point, when you talk to the doctor(s), have someone with you to help remember what was said and understand the answers to your questions. For those of us who don't work in medicine, the extremely unfamiliar vocabulary can be daunting. Or, when one is already flummoxed or stressed, just sound like gobbledygook. And some people are reluctant to re-ask a doctor to re-explain something. It's also a good idea to just record the meeting...you can use your cellphone for that. You can re-, or rere-listen to what the doctor said at your leisure, research unfamiliar terms or treatment options and slowly start to make sense of it all. Then feel more confident of the path ahead.

That's my granddaughter Paisley and I have custody of so she is like my daughter I'll get back to you with the names of the meds I start them tomorrow as far as having people around me yes I do

Hi Merry my oldest daughter has been going with me to all my doctors and she asks a lot of questions at first I was a little put back thinking she was bothering the doctors but then I realized she was getting answers to things I would have never thought to ask and she writes everything down so now I just let her do her thing

Tom, good morning-I can see how that would be bothersome. My husband did this to me too with my first cancer. What might be a good thing to do, while preparing for your visits is to sit down prior to your visit or zoom call and make a list of questions to ask concerns and any information that you need. And do any research that you need to do for further understanding.

You have your hands full with that gorgeous child! How lucky you are. Do you have any particular questions that I might help with?

Hi Tom and welcome to the club you'd never chose to join.
My experience with this disease has lasted almost 5 years now and for 4 of them I've been a stage IV. I accidentally found out that something was remiss when I went into urgent care after dragging myself through a week working my school job and just didn't have the energy to go waitress on Friday night. I was diagnosed with influenza B, but they saw something on my chest Xray and wanted to see if it was gone when I recovered. Needless to say, it wasn't, and I started the journey I knew absolutely nothing about. It was just a whirlwind of appointments, biopsy..... I ended up having my upper left lobe removed; my local oncologist at that time thought that all was well and didn't believe any more treatment was warranted. A year later I was told I was stage IV with a very limited life span unless by some very small chance I had a mutation. My family was devastated, I couldn't go for longer than 2 minutes without thinking of my impending demise. My life was consumed by the grief that comes from having to say goodbye to everyone and everything you love. I sought a counselor and ended up seeing a fantastic psychiatrist. We came to the conclusion that there was not a drug out there that would make me feel good about dying, but he did prescribe hydroxyzine and copied off many pages of legalities that I wanted to make sure I figured out (wills, health care directive..). Soon after that appointment I decided I could spend the rest of my life grieving and in fear or make the best of the life I love for the time I have left to love. Shortly thereafter I received the spectacular news that I have a ROS1 driver. I started a targeted therapy drug called Xalkori almost 4 years ago and I am here today enjoying my life. The side effects are not always pleasant, but they aren't that bad, and life is good! I know that someday my cancer will outsmart my drug and I can only hope that when that day comes another drug will be introduced that will continue the battle. I want to be a crusader in the fight for research dollars. Lung cancer is the lowest funded and the largest killer. I am hoping that by sharing my story with others I can do my part in raising awareness in the community of those fortunate enough not to know about this rotten scary disease. I am also hoping to share a message of hope to those that are like you, new to all of this and terrified of what's to come. I suggest to always bring at least one extra set of ears and embrace those people that love you and want to be there for you. I'm so glad you found this site and are part of the Mayo, which I believe is absolutely fabulous.
Hugs and hope,
Cindy

Tom
hi.. im right there with you. newly diagnosed ( following chest xray for persistent cough) .. waiting on second opinion before chemo/immuno and surgery. the waiting is the WORST!. im hoping to find some info on here about side effects, etc...
i wish you the best on your journey!
Amy

cindy....I applaud everything you say here....a wonderful message of hope. I have been on Xalkori for 5 years now and am optimistic that when the cancer starts to overwhelm the drug that there will be a new one out there to replace it. I am hoping the doctors took extra tissue samples during your biopsies to find the genetics of the tumor and prescribe a treatment from there.
I agree about the extra set of ears when talking with the doctor as it is often hard to understand what he/she is telling you.
Lastly (said this on another post) stay active and spend time with friends while waiting to start treatment. It takes time for it all to come together. I enjoyed my weekly frozen Margaritas with my pals sitting fairly close to the ocean.

Newly diagnosed. NSCLC squamous cell carcinoma
Hi all,
I am newly diagnosed with NSCLC stage 3. Starting soon with Radio and Chemotherapy treatment for 6 weeks. I am very anxious and have no idea of what to expect. I am from the United Kingdom. I pray for all of you. God bless.

@snoekie, just know that you aren’t alone. Hopefully your doctors can give you a better idea of what to expect at each step in the treatment process. Don’t be afraid to ask questions of your doctors and nurses.
How was your cancer found? Were you experiencing symptoms?
Lisa

Hi Lisa,
I had a chest infection and then sent for an chest xray. Came back with abnormal results. Right lower lobe. Had a Pet scan and Bronchoscopy. Staging is as follows T3 N2 M0
I am trying to stay very positive. They said that surgery was not an option due to the 2 nymph lodes, hence Radio and Chemo.