LOOKING FOR A FORUM OR DISCUSSION ABOUT LUNG CANCER

JUSTDON
JUSTDON Member Posts: 1

Hello. I just signed into this site and hope I am posting this correctly. I was diagnosed in April with stage 4 non small cell lung cancer which had spread to both adrenal glands - no symptoms , Dr found anomolies in bloodwork during routine exam - which led to further checks and diagnosis. No surgery posible, no radiation , etc - did about 4 months of chemo which was terminated due to lack of effect. Have now been on clinical trial - Immunotherapy (Nivolumab) since end of August.  Early tests seem favorable and am feeling pretty good.

I am trying to find a discussion board or forum of folks who may be in a same or similar situation , hopefully just plain talk.

Thanks

Don

Comments

  • rdn2blazer
    rdn2blazer Member Posts: 46
    Hello Don, sorry about the diognosis...

    I had stage 4 NSCLC that metastasized to my brain causing a tumor over an inch in size. Had brain surgery to remove. Second brain tumor almost a year and a half later, and have beed dealing with it for 9 months after radio surgery. The bigger problem in the brain swelling I live with each and everyday. My MRI immages are horrendous, but I'm still alive. All Lymphnode biopsys were negitive thank god. No surgery for second tumor. I doubt its operable where it is. May of 15 will be three year survival for me. Lost 1/2 a lung too. Still kicking cancers **** everyday. If you want to talk personally let me know and we can get phone numbers in private message. Also, from what I have heard, Adrenal glad cancer or tumors are very rare. A lady in my cancer support group had a tumor in her adrenal gland that burst during surgery BEFORE removal so the risk of it being melignant went up I guess from what she said.

    They cleaned it up as best as possible but she has to have scans and test like any other cancer patient even though they're calling it Pre-cancerous and she went through chemo even though they said she had no signs of actual cancer. It was like preventitive maintenance.  It was just a tumor found in the gland from another checkup she was having. Nothing even related to the adrenal gland, it was found in a PET scan. But treatment for adrenal gland tumors or I guess cancer too is not been deeply researched like lung and breast and others. She is seeing a specialist that specializes in adrenal cancer, one of a few as she said she was having little luck as first finding a specialist for this type of cancer. If you want me to get any info on her doctor let me know. I can text her requesting doctor info as I have her number. Take care and good luck. To have any chance at beating this you have to never ever give up fighting and having a positive attitude period. I will check back on this thread soon, in a day or so. Later

     

    Rob

  • rdn2blazer
    rdn2blazer Member Posts: 46

    Hello Don, sorry about the diognosis...

    I had stage 4 NSCLC that metastasized to my brain causing a tumor over an inch in size. Had brain surgery to remove. Second brain tumor almost a year and a half later, and have beed dealing with it for 9 months after radio surgery. The bigger problem in the brain swelling I live with each and everyday. My MRI immages are horrendous, but I'm still alive. All Lymphnode biopsys were negitive thank god. No surgery for second tumor. I doubt its operable where it is. May of 15 will be three year survival for me. Lost 1/2 a lung too. Still kicking cancers **** everyday. If you want to talk personally let me know and we can get phone numbers in private message. Also, from what I have heard, Adrenal glad cancer or tumors are very rare. A lady in my cancer support group had a tumor in her adrenal gland that burst during surgery BEFORE removal so the risk of it being melignant went up I guess from what she said.

    They cleaned it up as best as possible but she has to have scans and test like any other cancer patient even though they're calling it Pre-cancerous and she went through chemo even though they said she had no signs of actual cancer. It was like preventitive maintenance.  It was just a tumor found in the gland from another checkup she was having. Nothing even related to the adrenal gland, it was found in a PET scan. But treatment for adrenal gland tumors or I guess cancer too is not been deeply researched like lung and breast and others. She is seeing a specialist that specializes in adrenal cancer, one of a few as she said she was having little luck as first finding a specialist for this type of cancer. If you want me to get any info on her doctor let me know. I can text her requesting doctor info as I have her number. Take care and good luck. To have any chance at beating this you have to never ever give up fighting and having a positive attitude period. I will check back on this thread soon, in a day or so. Later

     

    Rob

    FYI...

    Traffic here is Sloooooow too. It's unfortunately not such a fun topic to come to a chat site and talk about. Hence the reason for offering my number if you want to talk. I have met with other members too.

  • z
    z Member Posts: 1,411 Member
    Don

    Hello, Please check out the Inspire web site lots of traffic there and lots of experience with stage 4 nslc.  I wish you well Lori

  • trish1950
    trish1950 Member Posts: 1
    hi Don

    Keep the faith i to had stage 4 lung cancer,but couldnt have surgery,that was 7 years ago,took 3 months of radiation and chemo but i was very lucky had no sickness till the end of treatment,miracles do happen and i was very lucky,never give up,good luck

  • Djlchina
    Djlchina Member Posts: 1
    z said:

    Don

    Hello, Please check out the Inspire web site lots of traffic there and lots of experience with stage 4 nslc.  I wish you well Lori

    NSCLC

    Hi, which and where to look for Inspire web site? Thanks. David 

  • z
    z Member Posts: 1,411 Member
    Djlchina said:

    NSCLC

    Hi, which and where to look for Inspire web site? Thanks. David 

    Djlchina

    Google it.  Inspire Health and Wellness.  Sorry took so long to get back here. 

  • Deaniedeanie
    Deaniedeanie Member Posts: 2
    z said:

    Djlchina

    Google it.  Inspire Health and Wellness.  Sorry took so long to get back here. 

    Is the inspire health and

    Is the inspire health and wellness a forum or a website? I looked for it with no luck

  • z
    z Member Posts: 1,411 Member

    Is the inspire health and

    Is the inspire health and wellness a forum or a website? I looked for it with no luck

    deaniedeanie

    Inspire is a web site, google Inspire and it should come up 

    https://www.inspire.com/

     

    this is it, hope this helps Lori