Living with lung cancer - Introduce yourself & come say hi

Hi @lmillard345, welcome to Mayo Connect. Isn't it amazing to watch these targeted therapy medications do their work?! I'm glad that she's showing improvement.
Has her doctor provided any advice to manage the side effects? I have experience with a different targeted therapy, and sometimes the side effects do subside on their own over time. How long has she been taking the Tabrecta?

Thank you for reaching out, I appreciate it very much. My mom has been on tabrecta since April 1st. I got her compression socks which are helping with the swelling and comparing works for her nausea. Any tips would be useful. Thank you.

I am on Xalkori and have been for 8 years. Had LLL 8 years ago and taken 200m tablet 2x a day for years. Have been on 1 200m pill for a year and so far CT scans "unremarkable". I am very fortunate. My biogenetic markers fell into perfect alignment for this treatment.
As for side effects....I cannot take the xalkori without zofran pill as I throw up without it. When I took 2 doses a day I would take before a meal ...breakfast and dinner...)

The swelling of my legs and ankles comes and goes.....have heart issues so have to address it....I have taken spironolactone to reduce the swelling but it makes me feel awful so I try hopefully to reduce the swelling by drinking lots of water.

@dedehans, Eight years on the same treatment is great to hear. You are an inspiration to others. The drug side effects are always a hard part of the reality of the disease. I'm always surprised how they can change over time too. I'm glad that you continue to find ways to manage the hurdles. Keep on keeping on!

Thank you Lisa. I intend to. Sometimes have to physically and mentally push this old carcass to keep going but I do and think the positive movement keeps me as well as I can be. Oh, the many mornings I wake up (530am) and growl " you don't have to get up right now" but I do get up and get going as I have responsibilies to fulfill. But....I sleep as long as I want to one day a week.....9:00am. One must allow oneself this kind of luxury to do this if it works.

Hi there, I am Lisa, we just found out about a month ago from a random CT scan that my husband of 32 years has nodules in both lungs, enlarged lymph nodes on both sides, all with elevated SUV max scores. He is really healthy, hasn't smoked in 35 years, has absolutely no breathing problems, although he has always been sensitive to allergies and occasional asthma attack. We at first were stunned and terrified, and now have moved into denial while we wait to meet with pulmonologist again next week, I assume biopsies are the next step.

A bit about us, we are both math professors at the same same community college, have 2 great adult kids out on their own now, we got a new puppy and were getting ready to retire and start our "3rd act" together. Now our future is a big unknown, we are both trying not to focus on what we don't yet know, but honestly I am only keeping it together on the outside for him. Glad to be a part of this group.

Lisa, @lbucky, I responded on your other post, but want to welcome you to our group again.
Going through various stages of acceptance is perfectly normal. What ever you are both feeling is right where you need to be at the time. Try to keep talking to each other about what you're feeling. It's sometimes easy to clam up and keep it inside, but it will help if the two of you are in synch. It's ok to cry, this is stressful.
We've all faced the waiting. Waiting for appointments, additional tests, and results can be difficult. It will always take longer than you want it to but try to take a deep breath and do something to keep your mind off of things. I image that you both are very busy right now with the start of the school year.

Hi, my name is Kim, I’m 52, happily married, with 2 children in their 30’s and 5 grandchildren. Unfortunately, I was a smoker for over 30 years and quit last year. 2 months ago I was diagnosed with stage 3 non small cell carcinoma lung cancer, it is in my lymph nodes so surgery and radiation is not an option at this time. Fortunately, I have a targeted gene, BRAF, and will be taking two chemo pills a day to begin killing this monster inside me. I have been trying for two frustrating weeks to get my medicine and was just blessed this morning with a liaison to help me get the medicine.
I am from Fairbanks, Alaska, born and raised, and was diagnosed with pneumonia there, however, my mother and my instincts told me to seek a second opinion and so I came to the Mayo Clinic in Phoenix where I was diagnosed with this cancer. I went back home to Fairbanks to begin treatment, however, we were all convinced that I would get better care at the Mayo Clinic so my mother and I are back in Phoenix waiting for the meds to come so I can begin treatment here. It’s been a rollercoaster of emotions to say the least, and this is only the beginning. I thought I could take care of this on my own with the support of my family and friends but already I know that I cannot, I am going to need the help of others who are experiencing the same monster within them in order to conquer this thing, and so I am starting here and reaching out for help. I’ve never felt so vulnerable and not in control and I am scared! Any and all advice is appreciated.

Hi Kim, @kimbarr, Welcome to Mayo Connect! Thank goodness for mothers and instincts. I'm glad that you've been diagnosed so you can begin treatment.
I have a different mutation, ALK, and also take a targeted therapy/pills. That has been my only treatment. I'm still on that original treatment now, four years after diagnosis (stage IV, diagnosed at the age of 49).
No one deserves lung cancer, and we'll likely never know what caused your diagnosis. I tend to think mine is from something environmental, but others have told me that 'biology makes mistakes' and our immune systems can't always correct those mistakes.
The mental weight of the diagnosis is difficult. It will take time for you and your family to each process the reality of the situation, and you won't all have the same approach. Know that it does get easier over time. In the beginning, you need to spend some time sitting with your emotions, whatever that may look like to you; quiet time, crying, yelling, etc. Just try not to let the low times go on too long. Give yourself some grace and try to do something to take your mind off things too. You are in Arizona, are you feeling good enough to get out for a walk as the heat permits?
There have been a few others with relatives with BRAF on Connect, these are some that I've found. Maybe they'll pipe in with their experiences too. @rockpine, @duckduck2020
Hopefully your pills come soon, so you can get started.

Hi, I'm Sandy. I just found out in May that my low dose CT scan showed a nodule. Since then, I had surgery on May 29th.. a wedge resection. It had not spread to the lymph nodes, and they seem to think that they got it all. They said it was adenocarcinoma and staged me at 1B (I'm assuming it's B instead of A because the nodule had extended slightly into the pleural wall).

My pulmonologist didn't think chemo etc, would be needed unless I really wanted to. I didn't.

I looked up recurrence rates for NSCLC, and it wasn't very encouraging! I'm still having continued pain now in September for my robotic surgery I had at the end of May. It took me quite a bit longer than I expected to get up and around.

I guess I don't know if I should say that I have lung cancer, or not. I'm reluctant to say I'm cured, because I think more time needs to go by to see if anything else comes up. They plan on watching me closely.

Anyway.. I'm grateful for this group, and I learned some things in the last couple of months on here. I'm staying away from dot-com websites, and sticking with EDU, gov... That kind of thing and occasionally the British version of our NIH.

Smiles to you all!
Sandy