I am new

i feel absolutely in the dark with my Dr after reading how incredibly informed most of you are. i go Monday for round 3 of chemo. I do know i have stage 4 large cell. thats the extent of it though. i have a list of questions for her thanks to you all. If i may, I need to vent. Im scared! im still going though the "im too young" i just turned 44. No symptoms, no pain, feel normal still. i worry that if this chemo doesnt work, well thats it! I have no idea about gene mutations. Although the Dr said if this didnt work she would check into Duke for trials. What??? does that mean nothing else will be tried? I dont feel she is going the distance for me. The mental part is taking its toll on me. i will share my story eventually. I just need some uplift.

10 Replies

oldestnewest
  • Duke for trials is new stuff clinical trials ... If chemo don't work I would ask about immunotherapy.

    Most cancer doctors or oncologist when the do biopsy look at DNA of cancer ITs recommend SO can tailor treatment.

    Defo worth a ask especially as young and healthy ALSO don't let them rip you off with transfusions.

    This lots of option just make sure you ask

  • Lucy, God's healing hand be with you. I'm also new to this group which seems to be so helpful from the stories I've read. I had a lung lobectomy in July and although i have not gone thru chemo or radiation I've been scared and emotionally bumbed out.....but and i mean but in a loving way God Almighty is the great physician. I will pray for you Lucy....stay strong and know you are not alone. God bless you

  • LucyGoosy00 Quite often, chemo is the first treatment because it can be very aggressive against tumor cells. Don't think that will be the only option for you, however. There are many other treatments available after chemo is tried.

    I strongly recommend that you speak with your Dr about next steps so that you know what is going to happen. Also, your Dr is doing the right thing by looking into clinical trials.

    If you would like to learn about the treatment options available, please visit freetobreathe.org/lung-canc... and don't be afraid to bring these up with your Dr to find out what will work best for you.

    And as always, we are here to help!

  • Lucy, I am so glad you are reaching out.

    We have a great packet I would love to send you (all of our resources are free) - it would answer many of your questions. If you want to email me you street address, I'll get that out to you today (pbezruki@freetobreathe.org).

    Also, feel free to email or call me with questions 844.835.4325, would love to help. If you do go out to our website (as Travis suggested above), you'll also find information there about clinical trials and second opinions too, so look around. Wishing you the best, keep asking questions! Everyone here is more than happy to share - as you'll see!

  • Lucy,

    We all (or nearly all) started out in the same place as you - totally uninformed about this disease. It takes time to learn. It's harder when you have a rare form of the cancer, as you do with large cell - there is not nearly as much information available and fewer people to connect with who are/have been going through the same things you are.

    Here is an article by someone I know, who is dedicated to researching and writing sound information on lung cancer. verywell.com/large-cell-car...

    Clinical trials are actually considered to often be the very best option for lung cancer patients, especially rare ones like yours. You get the best of care, are watched like a hawk, and get to work with someone who is a specialist and up to date with all the latest research. I was in a clinical trial and believe it was an excellent decision, with real benefit to me.

    I am wishing you well. Write those questions down, don't expect to remember them all in the heat of an intense appointment.

    Anita

  • I feel ignorant once again. I have nsclc not large cell. I just assumed if it wasnt small cell than it was large cell. This is just too much 😭. Peggy i will email you this weekend. Thank you all for being so helpful. I let the scary www get in my head about my chances. A family member told me, those statistics dont account for the patients age, any other health conditions etc....their bodies probably cant withstand treatment. Where as i have no previous conditions, im younger than most who get this. I dont know but i do know im not ready to throw in the towel!

  • Lucy -

    I have two questions for you -

    1. Do you know if you have squamous cell or adenocarcinoma?

    2. If you have adenocarcinoma, did you have your cancer biopsied and genetically tested? Your doctor sounds like one who would do this if possible, if she is talking about clinical trials, because this is something that is now standard practice for adenocarcinoma.

    One suggestion if you want to know more about your particular situation: ask for copies of the lab and scan reports. They may seem like greek right now, but they will make more sense to you as you read them over and over. You can also use them to ask questions of your doctor.

    It's not too late to learn more about your situation, but you will have to wade through some medical jargon. Maybe you know someone who can help you - do you have a friend or family member who is a nurse?

    Anita

  • You fight, Lucy! You've got a lot going for you!

  • I was 53 years old and had never smoked when my NSCLC was found by accident. I was suppose to have a heart valve repaired, doing the pre-op for that surgery when everything was put on hold to figure out what was on my lung. That lead to lots of tests before I had surgery to remove my upper right lobe. I was very lucky when they found my cancer since it was at stage 1B. Following surgery for my lung,1 month later, I had my heart valve repaired; 1 month later started chemo. Had 4 rounds of chemo, and now see my oncologist every 6 months to check that the cancer has not returned. It has been 3 years since all this started and during this time I have had additional tests since my CT has shown some on my liver and now we are watching something on my lower left lobe. Unfortunately it is to small to do anything at this time but watch and see what happens. As hard as that was to hear I am thankful that regardless of what it is, they will have found it early. Through this whole process I am thankful they found my cancer early and during that hard time I would keep telling myself that is others can do this so can I. This is a wonderful forum to hear from others who have gone through similar experiences and are an inspiration to me on how supportive and open about their own experiences. Remember there are a lot of of here for you.

  • Have you considered natural cures? I also found my cancer by chance and it was early and was able to have surgery in December 2015. Doing natural causes ire and pet scan from Aug. this year showed no cancer lung

You may also like...