Father recently diagnosed with Non Small Cell Lung Cancer Stage 4

shellee13
shellee13 Member Posts: 4
in Lung Cancer #1

My Father has been recently diagnosed with Stage 4 Non Small Cell Lung Cancer.  It spread to his lymph nodes and spine.  He has great attitude and has just started chemo.  The statistics are not good but am hopeful that we can beat them.  I am looking for any helpful information from anyone that is dealing with a similar situation.  Will the chemo keep the cancer under control? 

 

Comments

  • rcride2015
    rcride2015 Member Posts: 1
    #2
    My .02 for NSCLC dx

    Hi, very sorry to hear of your father's dx. My mom was dx'd almost 1 year to the day with NSCLC s. iv, Adenocarcinoma, never smoker. Started on carbo, beat it back extremely well. No serious sides to speak. Wouldn't have known she had cancer up until the last month. Her maintenance was Alimta, didn't work well. Next was Taxatere, a lot rougher chemo, really didn't get far with that. Gamma for small brain mets, piece of cake, poof they're gone.

    Please, get a second opinion whatever you do. Go to at least two different oncologists but do NOT wait until things stop working or he declines. Try for an apt. in between rounds of his first line chemo b/c most clincics won't see pts. during a round. Some will do the standard genetic testing for EGFR mutations for Tarceva sensitivity. Otherwise, some will just follow "one size fits all" protocol, which is also likely the hospital's protocol they MUST follow. My advice is to seek opinions until you feel 100% confident your dad will receive persoanlized care. From my research, you need to make certain of mutations, if any. With some mutations you're talking a pretty normal life, indefinitely. Your options may include immunotherapy, most are in trials. Aside from those, there are out of pocket services that will actually take a bioposied specimen and by using ex-vivo analysis find which chemo treats your specific type.. none of the, "let's try this and see what happens" stuff. 

    Hope this helps, even if just a tad bit. I'm not a message board type of guy, but I felt compelled to respond.

    Best of health to your father and God Bless. 

  • dennycee
    dennycee Member Posts: 857 Member
    #3
    I've been living and thriving

    I've been living and thriving with stage 4 lung cancer for 4.5+ years.  At the LUNGevity Hope Summit this year I met a woman who had survived 8 years with mets to her spine (radiated).  I've an acquaintance that was diagnosed 15 years ago when his nsclc was diagnosed because of mets to his brain.  This does not have to be a death sentence!  

    My disease was treated with both chemo and radiation.  Please know that those statistics are based on the results off hundreds of thousands of lung cancer patients.  They use that info to make a bell curve.  They tell you what the median survival is but there is no way to predict with certainty where you will wind up on the curve. 

  • shellee13
    shellee13 Member Posts: 4
    #4
    rcride2015 said:

    My .02 for NSCLC dx

    Hi, very sorry to hear of your father's dx. My mom was dx'd almost 1 year to the day with NSCLC s. iv, Adenocarcinoma, never smoker. Started on carbo, beat it back extremely well. No serious sides to speak. Wouldn't have known she had cancer up until the last month. Her maintenance was Alimta, didn't work well. Next was Taxatere, a lot rougher chemo, really didn't get far with that. Gamma for small brain mets, piece of cake, poof they're gone.

    Please, get a second opinion whatever you do. Go to at least two different oncologists but do NOT wait until things stop working or he declines. Try for an apt. in between rounds of his first line chemo b/c most clincics won't see pts. during a round. Some will do the standard genetic testing for EGFR mutations for Tarceva sensitivity. Otherwise, some will just follow "one size fits all" protocol, which is also likely the hospital's protocol they MUST follow. My advice is to seek opinions until you feel 100% confident your dad will receive persoanlized care. From my research, you need to make certain of mutations, if any. With some mutations you're talking a pretty normal life, indefinitely. Your options may include immunotherapy, most are in trials. Aside from those, there are out of pocket services that will actually take a bioposied specimen and by using ex-vivo analysis find which chemo treats your specific type.. none of the, "let's try this and see what happens" stuff. 

    Hope this helps, even if just a tad bit. I'm not a message board type of guy, but I felt compelled to respond.

    Best of health to your father and God Bless. 

    Thank you so much!

    Thanks for all the information.  My father did get two opinions and both said they would do the same chemo.  But you are absolutely right with the "one size fits all".  I feel that is exactly what he is getting.  He is very confident in his doctor but I am not so sure that everything possible is being done.  The second opinion told him that the average life expectancy was about two years.  I felt that this doctor already gave up on him by telling him this prognosis.  My father is very set in his ways and it will take a lot of convincing to get him to seek other options.   Praying for your mother.  

    Thanks again.  

  • shellee13
    shellee13 Member Posts: 4
    #5
    dennycee said:

    I've been living and thriving

    I've been living and thriving with stage 4 lung cancer for 4.5+ years.  At the LUNGevity Hope Summit this year I met a woman who had survived 8 years with mets to her spine (radiated).  I've an acquaintance that was diagnosed 15 years ago when his nsclc was diagnosed because of mets to his brain.  This does not have to be a death sentence!  

    My disease was treated with both chemo and radiation.  Please know that those statistics are based on the results off hundreds of thousands of lung cancer patients.  They use that info to make a bell curve.  They tell you what the median survival is but there is no way to predict with certainty where you will wind up on the curve. 

    Thank you.

    Thank you.  I am so glad to hear that you are beating it and that there are others as well.  I have been searching for hope and people that have beat the horrible statistics that are posted on the internet.  My father does have mets to his spine but they have not offered him radiation as an option.  He is currently receiving chemo every 21 days.  His has a great attitude and just pray that he can also beat this.  

    Thank you and great news to hear that you and others are doing well.  

    God Bless. 

    Thanks.  

  • shellee13
    shellee13 Member Posts: 4
    #6
    dennycee said:

    I've been living and thriving

    I've been living and thriving with stage 4 lung cancer for 4.5+ years.  At the LUNGevity Hope Summit this year I met a woman who had survived 8 years with mets to her spine (radiated).  I've an acquaintance that was diagnosed 15 years ago when his nsclc was diagnosed because of mets to his brain.  This does not have to be a death sentence!  

    My disease was treated with both chemo and radiation.  Please know that those statistics are based on the results off hundreds of thousands of lung cancer patients.  They use that info to make a bell curve.  They tell you what the median survival is but there is no way to predict with certainty where you will wind up on the curve. 

    Where did you receive your treatment?

    If you don't mind me asking, where did you receive your treatment and did you get more than one opinion before starting treatment?  

    Thanks Shelly 

  • dennycee
    dennycee Member Posts: 857 Member
    #7
    shellee13 said:

    Where did you receive your treatment?

    If you don't mind me asking, where did you receive your treatment and did you get more than one opinion before starting treatment?  

    Thanks Shelly 

    Shelly,my treatment was in

    Shelly,my treatment was in Ann Arbor, MI.  That was in Oct 2010.   I did not get a second opinion.  My oncologist said that hue was go recommending an agressive treatment that included concurrent chemo and radiation. Stage 4 LC aside, iny general health was good and I was relatively young (58).  

    While your dad is undergoing chemo you might want to arrange a second opinion.  I got lucky and had a terrific response to my treatment.  what reason did they give for not wanting to radiate?  If this was my dad, I would want to get a second opinion at an National Cancer Care Network/ National Cancer Institute affiliated teaching hospital.  

    While you are checking out some of those statistics on line, you may want to visit inspire.com which is patient to patient.  Also cancergrace.org which is patient to patient and has oversight by several oncologists who participate in the threads.  Here at ACS I like the chatroom.  

    http://www.cancer.gov/research/nci-role/cancer-centers/find

  • Hlfortwe
    Hlfortwe Member Posts: 3
    #8
    dennycee said:

    Shelly,my treatment was in

    Shelly,my treatment was in Ann Arbor, MI.  That was in Oct 2010.   I did not get a second opinion.  My oncologist said that hue was go recommending an agressive treatment that included concurrent chemo and radiation. Stage 4 LC aside, iny general health was good and I was relatively young (58).  

    While your dad is undergoing chemo you might want to arrange a second opinion.  I got lucky and had a terrific response to my treatment.  what reason did they give for not wanting to radiate?  If this was my dad, I would want to get a second opinion at an National Cancer Care Network/ National Cancer Institute affiliated teaching hospital.  

    While you are checking out some of those statistics on line, you may want to visit inspire.com which is patient to patient.  Also cancergrace.org which is patient to patient and has oversight by several oncologists who participate in the threads.  Here at ACS I like the chatroom.  

    http://www.cancer.gov/research/nci-role/cancer-centers/find

    Hi Dennycee!! you are giving

    Hi Dennycee!! you are giving so many of us hope!!!! I would like to know more about your journey.  My Dad was diagnosed in August with stage 3 SCLC and complete the concrrent chemo and radiation in January of this year and had prophylactic brain radiation which finished in Mrach.  Did you have brain radiation as well? How long did it take you to get back to normal again?

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