Stage 4 Lung Cancer with Mets

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Comments

  • sarabb
    sarabb Member Posts: 3 Member
    Terrified

    Wondering how you are doing

  • Dbohn
    Dbohn Member Posts: 1
    jorola said:

    One step at a time

    Yes the is all scary and very overwhelming. There is a process that is followed. You do need to advocate for yourself as well though. I would push to get the biospy and consult right away. A biopsy is the only way to confirm the prescence of cancer cells. I encourage you to write down all your questions and let your dr know you need time to ask questions. Have someone with you. 2 sets of ears are better than one. Ask the dr if you can record the consult. if not have the other person take notes so you can focus on your conversation with the dr. If you are not sure what to even ask, here are some general questions that may help you get started:

    I have copied this from here- https://www.cancer.org/cancer/non-small-cell-lung-cancer/detection-diagnosis-staging/talking-with-doctor.html

    When you’re told you have lung cancer

    • What kind of lung cancer do I have?
    • Where exactly is the cancer? Has it spread beyond where it started?
    • What is the stage of my cancer, and what does that mean in my case?
    • Will I need any other tests before we can decide on treatment?
    • Have the cancer cells been checked for gene changes that could affect my treatment options?
    • Do I need to see any other doctors or health professionals?
    • If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?

    When deciding on a treatment plan

    • How much experience do you have treating this type of cancer?
    • What are my treatment choices?
    • What do you recommend and why?
    • What is the goal of my treatment?
    • Should I get a second opinion? How do I do that? Can you recommend someone?
    • What are the chances my cancer can be cured with these options?
    • How quickly do we need to decide on treatment?
    • What should I do to be ready for treatment?
    • How long will my treatment last?
    • What will treatment be like?
    • Where will my treatment be done?
    • What are the risks and side effects with the treatments you suggest?
    • Will treatment affect my daily activities?

    During treatment

    Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but asking the ones that do may be helpful.

    • How will we know if the treatment is working?
    • Is there anything I can do to help manage side effects?
    • What symptoms or side effects should I tell you about right away?
    • How can I reach you on nights, holidays, or weekends?
    • Do I need to change what I eat during treatment?
    • Are there any limits on what I can do?
    • What kind of exercise should I do, and how often?
    • Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?

    Be sure to ask about immunotherapy. Many have seen great success even in stage 4

    There is always hope. With new treatments coming out all the time, particularly with lung cancer, having cancer now is not even what it was like 5 years ago when my husband was diagnosed. His oncologist told him at his appt a few months that if he was dignosed today his treatment would look very different.

    I know this is hard but stop, breathe, take a step, breathe, take a step, breathe and repeat.

     

     

     

    Thank you that was very helpful!

  • aarguell3
    aarguell3 Member Posts: 1 *

    Hi Christina! I hope this message still finds you well and safe. I'm also in the Bay Area and in the San Mateo county. I was diagnosed towards the end of 2020 with Stage IV NSCLC lung cancer as well. I never smoked, tried to eat right (mostly organic), exercised frequently, and drinks rarely. No vices, drugs and/or any addictions. Family has no history of lung cancer as well. I have a collapsed right lung -- of which, some form of excess tissue has enveloped my lung and thus, cannot re-expand. It has also metastasized so it's also in my ribs, hips and some joints. My doctor started me off with some chemo bouts, and eventually she started me with entrectenib. When they eventually found a tumor in my liver, we shifted to lorlatinib. Side effects were funky, but I tolerated most of it -- except when it started manifesting in my hands. They started numbing and there were times when my fingers would get stuck at certain positions and it hurts so bad when i try to straighten them. Eventually a rheumatologist said that happens to everyone and it's not the side effects of my drugs. My recent scan also showed another tumor. This time it's a lot smaller. So we might shift back to chemo, with immunotheraphy included. So I'll be having three drugs at a time at every session. Hopefully it doesn't go there and I can just stick to lorlatinib. Hang in there, and I hope your treatments are making you get better. Stay positive and I believe all of us are amazing survivors!