Supporting a Family Member with NSCLC

Hello all,

Dad was diagnosed with Lung Cancer, (stage 4). What is disheartening is that he had been seeing his primary doctor regularly. And they just now discover this cancer at Stage 4. Been 8 months now, is doing the docefrez taxotere chemo. Hoping this will work. His spirit seems to be broken now. I'm trying to keep him up. Man, this is hard, especially since he was a non-smoker.

15 Replies

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  • This does not have to be a death sentence. I've been kicking stage 4 lung cancer patootie for 6.5 years. Talk to his hospital's oncology social worker and find out if there are any support groups available to him

    There are thousands of environmental factors that can cause lung cancer. It is not a surprise that the cancer was not discovered till late stage. It very rarely manifests any symptoms until it has spread. And doctors just don't look for it in non smokers.

    Did they test for egfr, alk and ROS1 mutations?

  • Send you and your dad my best hopes that this chemo regimen will be helpful. What treatment(s) has he already tried?

    Like Denzie, I also wonder if your dad was tested for mutations in his cancer. Non-smokers frequently have targetable mutations such as the ones Denzie lists.

    If he has any discomfort with his doctor, or wonders if he has any other options, this could be a good time to seek a second opinion, especially if he is getting care in a community cancer center and there is an NCI center within a reasonable distance from him.

    Anita

  • Thanks for the reply , this give me some hope. you guys are wonderful.

  • FwdSptNOc ,

    Your Dad and many, probably the majority of late stage Lung Cancer patients, often will not find their cancer until it is late stage and/or shows some symptoms, which for many never happens. Mine was also found at Stage IV, but I would never blame my Primary Care MD, he's awesome and I still see him. Sadly, unless you have a LC Screening, (which is not very common, especially for non-smokers and younger patients) -- LC often goes undetected, as in my case, and countless others. I never had any symptoms, so we never even looked for it and it's not ever going to be found in routine physicals and lab work

    My spread to my brain and it was the symptoms from the Brain Tumor that sent me to my MD, once I had those, he immediatley sent me for CT Scan and we found a brain tumor, which ultimately led us to determine that it was a Met from me having Stage IV NSCLC. The only symptoms I had came on in a matter of two days -- I thought it was "vertigo". Had the brain tumor not caused those symptoms, I'm not sure when it may have been found and it could have been even worse and been beyond treatment. I even had routine Hip Surgery exactly one month prior to my diagnosis and all my Pre-Op labs and testing were fine. It's a sneaky nasty cancer and hard to detect. I am so thankful that my PCP sent me for the Head CT and feel it helped save my life. I'm now NED and have been in the battle for a little over two years -- I hope to continue to do well and remain NED or stable for a very long time. For now, I'm taking each day and they come and hoping and planning to and long term LC Survivor and that in time, we will find our cure!!

    I am so sorry for you and your Dad and I understand your upset -- but please know it can happen to anyone -- any age, smoker or not -- if you have lungs, you can get lung cancer and sadly many do.

    Take care and I do wish your Dad the very best....

  • thank for the advise; give me a different perspective. you all are wonderful.

  • I have a friend whos sister in law had stage4 lung cancer 12 years ago and she is still with us. When I was diagnosed with stage 1 lung cancer she told me to drink alkline water 1tespoon of baking soda in a glass of water everyday so I do and so far so good they wanted to give me kemo but they can't tell if the cancer is there or if the radiation got it all. Cancer can not live in a highly ackline body 8.0 good luck have faith stay strong.

  • Also, what is NED?...im new to this community

  • Thanks alot, that helps me see a different perspective on this. Right now , its trying to get him the best care possible.

  • By the way, What is NED; this is all new to me.

  • No evidence of disease. This is a more precise way of saying "remission", which is used in so many ways these days, it's become a fuzzy term. Also doctors are very reluctant to say "cure" when it comes to cancer.

  • OK thanks, that clears it up

  • A cancer diagnosis, especially in older folks is devastating. They are used to a time when the diagnosis was equated with certain death, but times have changed things drastically. it is also frightening when this is the first diagnosis. This is my 5th diagnosis since 2002, and I clearly remember the difference from the first one, where I was terrified and wanted it out immediately to this one where I am more calm and trusting in the process of continuing my life. Cancer is sneaky, and all too often isn't caught unless there is a specific reason for testing, so please don't blame the doctor. My lung cancer was caught only because I went for screening offered to the community and I did it on a whim just in case. I have a pulmonologist and even he was a bit surprised at the results.

    If possible, have your dad join a support group for people with cancer, even if it isn't just for lung cancer. We had Gilda's Club for many years, and it was a great source of support even though we all had different types of cancer. If he is going to a cancer hospital, they often have a psychologist on staff who can help your dad work through the process of accepting this disease and seeing more than just the downside. Things have changed so very much in the last few years.

    One of the greatest pieces of advice I got from my doctor was to not pay attention to research that is more than 6 months old because things are changing so fast. What is being published now is usually over a year old (peer reviews, often multiple times leads to the information being older.)

    I write my questions down so that I don't forget to ask them, and always have a second set of ears or a tape recorder with me so that I don't miss or goof up what the doctor has to say. Often we get overwhelmed and naturally don't hear everything.

    You can't keep his spirits up, only he can do that, and the best way is to arm him with all the positive information out there. Talk to his doctor for as long as it takes to reassure him that there are many new treatments that have very positive results.

    God Bless all of you as you go through this journey. It is not an easy one, but it is very different from a few years ago.

    Please let us know if there is anything we can do to help. Often just reading other posts here is a great resource.

  • Many of us here have had our lung cancer found by accident. As mentioned above, it is a nasty, sneaky disease that often has no symptoms until it is advanced. I was one of the fortunate ones whose lung cancer was caught by accident during a cat scan being done prior to radiation therapy for breast cancer. This accidental discovery has been the case with several friends who have lung cancer, one who was diagnosed over 20 years ago. Think of all the advances that have occurred in 20 years. We now have many options open to us. This gives me much hope.

    I hope this helps.

    Jean

  • As a 2-year Survivor, and brother to a sister AND brother who are fighting and winning too, all I can tell you is that you are reminding him everyday to keep fighting, and never give up. I tell my sis and Bro that every day, if one form or fashion, . By you reinforcing that mental message every chance you get, you're giving him the positive courage he needs. I know it's tough on him, and even tougher on you, but some of the best medicine is exactly what you're doing. I just told myself this beast will not beat me, and, knock on wood, I've won. You and he will too! Stay strong!

  • Thanks for the words of encouragement, Dad especially needs it now, 'cause he is really depressed. I have to do all this research for him, cause he is to depressed to read any kind of news on this matter. I'm looking for others with the same experiences, and to get ideas on treatments for Dad.

    I tell him to stay up and stay positive, it feeds the body to fight this cancerous stuff.

    Much props to you on your beating this monster. Keep fighting the good fight.

    BillJbc

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