Living with lung cancer - Introduce yourself & come say hi

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.

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.

@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!

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.

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.

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?

My mom also has swelling and nausea. She's on 4 pills a day. Prayers lifted up for you to get good results!

Thank you for the information regarding Tabrecta. I'm so glad she is showing improvement. I started on it about 1 & 1/2 years ago taking four pills a day now I am down to two a day. I have had a lot of side effects, mainly swelling, but also dizziness's & balance issues. About six months ago the doctor said I had some diminishing of my lung cancer which is great, I just wish it had all gone away. He said I don't need another CT scan for six months, but I do need to continue the medicine. Good luck to your Mom & God bless.

My mom started Tabrecta on April 1st this year. She just had her 2nd pet scan and the improvement is miraculous!

Yes every day. 6 weeks 5 x week. I’m on #8. Actually doing good. Not sick yet. Just worried of those rays bouncing elsewhere. Thx u for responding to me