A question for the NSCLC Community

Please describe how your or your loved one’s condition impacts your day-to-day life. What frustrations or challenges do you experience? And what have you done to adjust to these challenges?

Answers from the Community

Challenges I faced are side effects from being on chemo for three years straight by IV. It has caused a white matter disease on the brain and I have been on disability because of this. To the eye, I look like I’m normal, but instead, I’m not able to really handle daily working. I’m easily confused. A number of side effects: depression, anxiety, and apparently bipolar, which is a chemical change, which makes sense because it was chemotherapy.

My day-to-day depends on just the side effects and where I am in my treatment, but I try to live as normal of life as I can. If I feel good, I’ll take the dog for a walk. I do artwork at home. And, I am reminded even if I have a good day, every evening about my terminal Stage 4 lung cancer because I take a targeted therapy chemotherapy pill once a day at night before bed. So every day, even if I can get through the day without thinking about it, then I’m reminded at night that I’m living with this disease.

Well, I am the patient and I was diagnosed three years ago with non-small cell lung cancer. It’s been challenging because I’ve been on different chemo pills that I’ve been prescribed. The first one I took was Tagrisso and it had very good results, but after 10 months, apparently, it was destroying my heart muscle and sent me to the ER and ICU with renal failure, heart failure, where, as I did not have any of these problems before except high blood pressure. So I was taken off Tagrisso and then put on Tarceva, which I was on a while, but I was having too many side effects like diarrhea that wouldn’t stop and headaches and terrible fatigue. Then they switched me to Iressa, which I’m currently taking now and I do have a lot of symptoms of dry skin and nail embedment and rashes and diarrhea. It has impacted my life in that I don’t go out as much as I used to. I’m depressed because I have stage four it metastasized to the liver. Before this, I did not have symptoms that would lead me to think I had lung cancer. But my son lives with me, he’s my caregiver. So it’s impacted his life as well. So we’ve had to make a lot of adjustments in that perspective.

I have less stamina, and I get more short of breath more easily than before I got cancer. I walk every day with my dog, and so to adjust, I just go more slowly and maybe not go as far as I used to, but really, I think I do a lot better than I thought I would when I was first diagnosed.

Preparing a special diet, setting up equipment for a vibrating vest and a nebulizer and by running the equipment per drainage for a pleural effusion. Adjusting as well as can be. I use this as a daily challenge and find more efficient ways to accomplish them as we go along.

My main challenges are the after effects of chemotherapy. I have bone loss. I have some myopathy and neuropathy in my toes and my legs, and I get muscle cramps. The main thing that frustrates me is the osteoporosis and boneloss. Oh, and I also got thoracic scoliosis from my reduction of my lungs and it’s just really frustrating that I can’t work out at the gym like I used to. I fracture my ribs very easily and the bone gives me pain and repetitive stress syndrome.

It’s impacted my day-to-day life in that I’ve become much more sedentary and much less active. The frustration is that I used to be a much more active person. I have a lot of difficulty doing physical things, exercise and stuff like that. And how have I adjusted to these things? I think if you search long enough and hard enough, you can find adaptive things that you can do, maybe exercise from a chair or other things like that.

Pretty much it’s just the normal stress of the diagnosis. Also, the side effects from treatment, we just try and take it a day at a time and adjust wherever and however we need to.

Currently, my day to day life is not impacted as much as it was the first year of diagnosis. I’m two and a half years out. My medication is working fantastic. I’m able to breathe much better. My only impact right now is that I can get tired if I do a lot of activity during the day. But other than that, I’m pretty able to fight the fatigue with exercise and I feel pretty grateful.

I have some side effects from the medication that I’m currently on. And I suffer from fatigue that can be a bit debilitating at times and weight gain and just a general lack of energy from my targeted therapy. I also have some anxiety related to just dealing with a cancer diagnosis in general. To alleviate some of the side effects, I try to exercise regularly, eat properly, try to take naps during the day, delegate some of the responsibilities at home to other family members. And I also practice a lot of meditation and yoga to help me relax. And occasionally I do take an anti-anxiety pill, but that’s very rare, maybe once every two to three weeks when I’m feeling particularly anxious.

How my condition affects my day to day life. Due to losing one lobe on the left side of my chest, my lower left lobe, I’ve lost 25% of my lung capacity. This has limited my ability to do any running, walking uphill, or stairs. Frustrations. I have to always check for an elevator, rather than take the stairs. What have I done to adjust? I avoid walking where there are many hills, and I do not and cannot run at all.

Hi there. How has this impacted my day to day life? We live in Southern Florida and sun is one of the reasons we moved here, but I’m taking a medication to treat my cancer that gets very unhappy with sun exposure. So we stopped boating. We’ve stopped playing tennis. We’d become very much indoor people. It really has affected our every day existence. My medication works. That’s a huge blessing, but I can’t hang in the sun at all, and that’s really frustrating. So that’s kind of where we are right about now. There’s also, I would say, kind of the unknown of when are things going to change?

Being always conscious about having cancer, making sure that I’m eating healthy and moving my body, and I’m not getting sick. Very concerned all the time about not getting sick, whether it’s the flu, and especially now the COVID thing is making me a little crazy.

I think it’s really frustrating, because I have a lot of lack of energy. I’m not able to work a full day like I used to. So I lost the full-time job that I love. I am satisfying that need by working part-time. It’s not quite the same.

My lung cancer impacts my life by keeping me from doing most of the things that I used to do before I got lung cancer, like playing softball, running, working out hard at the gym. I’ve had to develop new hobbies that don’t require a lot of physicality, like refinishing furniture, and arts and crafts, and planting in my garden.