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  • Starting Conversations: Advanced Directives

    For some, starting conversations regarding end of life care can be very difficult. When is the right time to start that conversation? Who do we start the conversation with? What are the next steps after a conversation? Hearing about others experience with these talks can be super helpful. Share your thoughts or ask a question or two below!

    chemo questions

    I’m afraid to start chemo. I don’t want to loose all my hair. Ok, I’m already bald, but still…

    Remembering Jeffrey Poehlmann

    We were incredibly saddened to hear of the passing of contributor Jeffrey Poehlmann on October 21, 2018. Jeffrey had been living with stage IV lung cancer for the past 4 years and was an active advocate, sharing so much of his journey with the community. He will be remembered and missed by all who knew him, and all who read his writings.

    Read more about Jeffrey here and join us in remembering him by sharing any memories below.


    Have really bad odema in feet and hands. Due to tumour. Any ideas of what can help.

    Alternative Medicine

    Alternative medicine are more accepted now a days due to it’s promising results unlike pharmaceutical medicine, alternative medicine don’t give negative effect such as kidney and liver problems when it comes to long term use. As for my alternative medicine usage, I use medical marijuana. Different strain has a variety of uses and effect depending on your needs. Like this marijuana strain This strain has a very potent effect on chronic pains like back pain and joint pain and a lot more.


    Hello all. I have just finished chemo and radiation for NSCLC Stage III adenocarcinoma. I have been told the tumor did shrink and I responded well to the treatments. The doctor is going to start me on Immunotherapy for 6 months. My biopsy was not tested for DNA, etc, so I wonder how he would know which Immunotherapy to give me. Is there anyone out there that has had a similar experience? I would like to learn from others who have lung cancer what you know.

    I have stage 3 lung cancer was diagnosed last August

    I had no sign or symptoms prior . Then woke up to my eye twitching on lasted a minute or so . Happened one more time so I went to ER. Took some test then when getting ready for CT I had twitching of the eye again and the nurse put me in s bed and started me on seizure meds. I was immediately taken for CT . In an hour or so I had a brain surgeon and oncologist at my bed . Surgeon said I had a tumor on the right side in my brain that had traveled from my lung . Oncolologist told me I had lung cancer . Surgeon said had to be removed the next morning and that I was lucky I only had two small seizures . That I could have had a massive seizure and would may have to learn how to talk walk again . So I had surgery the tumor was close to the outer brain they said the rest of the brain showed no cancer. I was out on steroids for inflamation and was out of ICU after one evening and wasn’t incubated after surgery . About one month of recovering from brain surgery I started 6 treatments of a very strong Chemo and also another plus keytruda. I had a Ct after 3rd treatment and tumor shrunk and shrunk again after the 6 th treatment . I was then taken off the strongest Chemo they said that Chemo would not do anymore after the 6 treatment . So no I’m on 1 Chemo and keytruda with one y last treatment tomorrow for now because Dr wants a CT in 2 weeks or so to see where we stand. I forgot to mention that they found a small amount also spread to my clavicle bone and tats why I was diagnose as stage 3 . Also had a small dose of radiation to my brain in the beginning and have had 2 MRI since then they both showed no sign of anything growing in the brain . Scheduled for another MRI for brain end of August. I’m so scared to have the next CT in two weeks . I can’t stop thinking what it will show and what the next step will be for me. Ugh Sorry such a long text.

    High Grade Primary Pulmonary Mucoepidermoid Carcinoma

    I am so blessed to have been diagnosed with stage one lung cancer in January 2017. I had VATS in February 2017 to remove my lower right lobe and a resection of the middle right lobe. I have scans every six months which have been NED so far. My cancer was high grade Primary Pulmonary Mucoepidermoid Carcinoma, which is less than 1% of all lung cancers. I am looking for other patients diagnosed with this rare cancer. I would appreciate any responses.

    Small cell lung cancer

    Good evening.
    I only just joined this website, and this is my first share. I am very interested to hear from other members who may also have been diagnosed with small cell lung cancer, their journey and treatment options.
    I was diagnosed last September, end stage, with mets to both liver and bones and recently with brain tumors as well. Ever since the new development of the brain involvement, I have gone down hill fast. It affects my balance and walking. Now trying to regain my strength after brain radiation, and it’s very slow going. I would love some feedback from fellow small cell survivors.
    Sincerely karla54

    Newly Diagnosed

    I’m newly diagnosed and petrified of my upcoming surgery. The drainage tube seems to be the worst culprit. When I had my biopsi that was the only real pain I had. My surgeon will remove two lobes the top and middle on my right lung. As I said I’m petrified. I have 11grandchildren, three children and there spouses. I have a wonderful husband. I’m not ready to leave so I have to do this. Of coarse knowing I have to do this doesn’t make it any easier. Thank u for listening.

    Remembering Nicole Russell

    We were incredibly saddened to hear of the passing of contributor Nicole Russell on Friday, February 16. In addition to being a loving mother, wife, daughter, friend, and military veteran, Nicole was a wonderful lung cancer advocate and an incredible person. Her writing, advocacy efforts, and overall kindness have reached and impacted many; she will be missed.

    Read more about Nicole here and please feel free to join us in remembering Nicole.


    Hi- I just joined this site so that I can be in touch with other people who have or had lung cancer. Two of my friends who had lung cancer are gone now. I’ve had lung cancer for 20 years and thought that I should share my story on a blog,
    I’ve had 2 surgeries, chemotherapy and two types of radiation: Proton and Photon. I am currently one week away from my first follow-up CT scan for my last cancer that was in October. That was taken care of (I hope) by Photon Radiation. There has been no staging done on my last 2 cancers. They have been to difficult to access.

    Except for my first cancer I have multifocal adenocarcinoma of the lung. I really hope that I can connect with people. My husband has been a wonderful, supportive care taker but I’d love to connect with people who know what I feel and what it’s like to have lung cancer.
    Thank you

    Cancer Spreading

    My Mom, who is 81, was diagnosed with lung cancer in August. She had 10 treatments of radiation. We had a pet scan in early December. The docs said the cancer was non-aggressive and we should just enjoy time. But then Mom started getting weak. We did not realize until January but she was having fluid on her lungs and on her heart.. She had that drained. We had to wait 6 weeks after the surgery for a pet scan to check on the cancer. Now it seems to have exploded. We had the pet scan and then went to the stat clinic. We got told that the cancer has spread to the liver, more lymph nodes and more of the lung. Basically they said she was terminal to go home and call hospice. It just seemed so crazy that it just exploded. Has anyone else had this same thing? I was dumb founded

    Mobility chairs

    Actually, I have two questions. Why are all of the posts indicated as being done so long ago? Is this not an active site? Some of the subjects are over 10 months old with no activity since.

    But actually, I want to know why the site has not pushed on Medicare and the insurance companies to approve folding power chairs. I have bought a folding power chair (I will name the company to those interested) but without any financial help from Medicare or insurance (Humana) because they consider the chair a “recorational vehicle”. It is anything BUT. My caregiver (my wife) and I are both 84 years old and cannot handle a chair that weighs 80+ pounds. The chair I bought weighs only 41 pounds (then you add the 12 pounds of batteries). It folds to put in the trunk of the car, and will go 10 miles on each of the two batteries. It is a life saver for someone with emphysema and a short garage. Has any research been done for those of us with Lung Cancer on mobility? Does anyone even care?


    I’ve been on Tarceva almost 2 years. I’ve had some weird side effects – from head to toe – literally. I’ve had a yearlong battle with an infection in my toenail to rash and sores on my head. I’ve heard people who have rashes have better cancer fighting results. Is that true if you?

    Gemcitabine – Any Information?

    I am to try this Chemo drug. Has anyone ever tried it? I am worried about chemo brain fog which I had with past chemo drug Alimta. It was terrible. I didn’t think I was going to make it. Matter of fact if there was any other option to keep me alive, I would take it. However I don’t qualify for immunotherapy, done all the radiation, surgery not an option, tried different pills but couldn’t tolerate them. Any information would help. Thanks.


    Had an MRI of the thoracic spine that showed mass on my right lung. Had very painful VATS surgery which diagnosed me with stage 3b adenocarcinoma lung cancer. The cancer has spread to the lymph nodes. I’m wondering if I qualify for Opdivo.

    Hello, and glad to join the community.

    I was diagnosed December, 2016.
    12 infusions of Keytruda.
    Last 2 skans, tumors we’re shrinking.
    Side effects mostly are joint pain.Take alot of Advil. Also fatigue can hit anytime.
    Am a survivor of melanoma 17 years ago.
    Joint and muscle pain worse at night.
    Quite depressed, and sad. Trying not to be.

    Hello! Checking in.

    Hi, my name is Denise but I also go by Denzie. I recognize many of the names I see here. I’m a 6.5 year survivor of stage 4 lung adenocarcinoma. I’ve no idea what my mutation status is as this was not a Standard of Care when I was diagnosed. Fortunately for me I seem to have had a complete response as I’ve had only one line of treatment and no maintenance drug. My dr says we’ll test if/when I experience progression.

    None of this has stopped me from learning about my options for future treatments though. The past few years I’ve had quite an education and learned some mad research skills. There were lessons that I applied when I was diagnosed with my second primary cancer. Having survived stage 4 lung cancer, being diagnosed with a stage one breast cancer did not have or the same impact or fear factor. That doesn’t mean it was easy but my docs had one fierce self advocate to work with.

    I look forward to getting to know you all and this site better.

    Keytruda? Totally shocked & scared!

    On June 25th my anniversary I was diagnosed with stage 4 non small cell lung cancer. It is in my lung and lining and now the think my liver. I’m doing Keytruda. Anyone have some advise?

Viewing 20 topics - 1 through 20 (of 42 total)