Update --now stage IV

Dapsterd
Dapsterd Member Posts: 291
Hello Family! IIIB NSCLC--now stage IV, I was NED for about 6 months and doing good, then the three brain mets came. The Surgeon team removed one 1" tumor, gamma-knifed one and are waiting till about january-ish for for a another MRI and suggest the 3rd to grow larger, then it can be addressed.

Still NED on rest of body acccording to a PET last month! Kind of worried about the Mets to the brain though. Still have a 6" scar/scab on back of head from the surgery 7 weeks ago.

Any thoughts?

Brother Dave

Comments

  • z
    z Member Posts: 1,411 Member
    Dave
    Hello Dave, I am sorry you are stage IV, but the fact that you have been able to treat the mets is a good sign and I hope that you will get that last one treated and be done with the cancer. There is a person on Inspire named G who is stage IV, and had brain mets and has now shown ned for 12 years after being treated for the brain mets. I hope that you will visit Inspire and find him. It just shows me that these mets can be addressed and you can have a good outcome. His user ID stage4survivor. I wish you the best. Lori

    Here is part of his journal which addresses the brain mets.


    11/2000: large brain met regrew, had GammaKnife on all 3 brain mets

    I refused full court press for WBR
    No supplements, no diet, no nothing since 11/2000
  • Dapsterd
    Dapsterd Member Posts: 291
    z said:

    Dave
    Hello Dave, I am sorry you are stage IV, but the fact that you have been able to treat the mets is a good sign and I hope that you will get that last one treated and be done with the cancer. There is a person on Inspire named G who is stage IV, and had brain mets and has now shown ned for 12 years after being treated for the brain mets. I hope that you will visit Inspire and find him. It just shows me that these mets can be addressed and you can have a good outcome. His user ID stage4survivor. I wish you the best. Lori

    Here is part of his journal which addresses the brain mets.


    11/2000: large brain met regrew, had GammaKnife on all 3 brain mets

    I refused full court press for WBR
    No supplements, no diet, no nothing since 11/2000

    Thanx
    Thanx Z!.....I will look at Inspire. Getting a bit worried these days, but should be ok !! Stage III was one thing, but now IV ? Crazy!

    Thanx
    Dave
  • NayPaul
    NayPaul Member Posts: 230
    Dapsterd said:

    Thanx
    Thanx Z!.....I will look at Inspire. Getting a bit worried these days, but should be ok !! Stage III was one thing, but now IV ? Crazy!

    Thanx
    Dave

    Take it one stage at a time. :)

    I know its serious, but we always tried to find the levity.

    In all seriousness, the other quote that I like as it pertains to you is...

    "Worrying does not take away tommorrow's troubles, but it does take away today's happiness.

    Do look at Inspire, and keep posting.

    Ben
  • Dapsterd
    Dapsterd Member Posts: 291
    NayPaul said:

    Take it one stage at a time. :)

    I know its serious, but we always tried to find the levity.

    In all seriousness, the other quote that I like as it pertains to you is...

    "Worrying does not take away tommorrow's troubles, but it does take away today's happiness.

    Do look at Inspire, and keep posting.

    Ben

    Jan 14th MRI
    Thanx Folks......Jan 13th will be my 3rd MRI of the brain since they discovered Mets there, it will be interesting to see if it is there, got larger, or gone! or maybe more Mets? How really know? Life is good, I feel I will beat those stage iv stats!
    Going from Mi to FL for 3 week vacation, so...all is good! Again, lung and lymphs are scarred but clear of cancer for now!

    keep u all posted

    Dave
  • z
    z Member Posts: 1,411 Member
    Dapsterd said:

    Jan 14th MRI
    Thanx Folks......Jan 13th will be my 3rd MRI of the brain since they discovered Mets there, it will be interesting to see if it is there, got larger, or gone! or maybe more Mets? How really know? Life is good, I feel I will beat those stage iv stats!
    Going from Mi to FL for 3 week vacation, so...all is good! Again, lung and lymphs are scarred but clear of cancer for now!

    keep u all posted

    Dave

    Dave
    Have a great vacation, and I am so glad everything is clear. I am only sending postive thoughts for your mri. Lori
  • grannylove
    grannylove Member Posts: 183
    Dapsterd said:

    Jan 14th MRI
    Thanx Folks......Jan 13th will be my 3rd MRI of the brain since they discovered Mets there, it will be interesting to see if it is there, got larger, or gone! or maybe more Mets? How really know? Life is good, I feel I will beat those stage iv stats!
    Going from Mi to FL for 3 week vacation, so...all is good! Again, lung and lymphs are scarred but clear of cancer for now!

    keep u all posted

    Dave

    Toes in the sand...
    Have a great and relaxing time on vac Dave! Much deserved. We have your back and will do all the worrying for you so nothing for you to do, but have a good time! The ocean has great healing properties and toes in the warm sand is like icing on a cake. Glad to hear the lung and lymphs are clear.....now all you need is the same for the brain! Positive vibes coming your way for a good MRI! Cheryl
  • kado4
    kado4 Member Posts: 80
    Dapsterd said:

    Jan 14th MRI
    Thanx Folks......Jan 13th will be my 3rd MRI of the brain since they discovered Mets there, it will be interesting to see if it is there, got larger, or gone! or maybe more Mets? How really know? Life is good, I feel I will beat those stage iv stats!
    Going from Mi to FL for 3 week vacation, so...all is good! Again, lung and lymphs are scarred but clear of cancer for now!

    keep u all posted

    Dave

    sunshine and blue skies and warm sand.....awesome
    Hello Dave...I just wanted to say, have a great vacation in Florida.How great for you to be in florida this time of year...cold and dreary here in ohio...anyway...enjoy yourself,enjoy life..it is meant to be lived!!....Will keep positive thoughts and prayers for you.


    Sincerely,Cathy (kado)
  • Glenna M
    Glenna M Member Posts: 1,576
    Dapsterd said:

    Jan 14th MRI
    Thanx Folks......Jan 13th will be my 3rd MRI of the brain since they discovered Mets there, it will be interesting to see if it is there, got larger, or gone! or maybe more Mets? How really know? Life is good, I feel I will beat those stage iv stats!
    Going from Mi to FL for 3 week vacation, so...all is good! Again, lung and lymphs are scarred but clear of cancer for now!

    keep u all posted

    Dave

    Florida
    Three weeks in Florida is just what the doctor ordered :) It will do your spirit wonders to get down there in the sun and warm temps and will help you relax and forget about your current problems.

    Will keep you in my prayers for your scan on the 13th.

    Life is good so get out there and enjoy it!!
    Glenna
  • medi_2
    medi_2 Member Posts: 505
    Dapsterd said:

    Jan 14th MRI
    Thanx Folks......Jan 13th will be my 3rd MRI of the brain since they discovered Mets there, it will be interesting to see if it is there, got larger, or gone! or maybe more Mets? How really know? Life is good, I feel I will beat those stage iv stats!
    Going from Mi to FL for 3 week vacation, so...all is good! Again, lung and lymphs are scarred but clear of cancer for now!

    keep u all posted

    Dave

    ;)
    Bring a sweater or two...
    Cheers!
    Medi
  • Sandblaster
    Sandblaster Member Posts: 17
    Dapsterd said:

    Jan 14th MRI
    Thanx Folks......Jan 13th will be my 3rd MRI of the brain since they discovered Mets there, it will be interesting to see if it is there, got larger, or gone! or maybe more Mets? How really know? Life is good, I feel I will beat those stage iv stats!
    Going from Mi to FL for 3 week vacation, so...all is good! Again, lung and lymphs are scarred but clear of cancer for now!

    keep u all posted

    Dave

    mets
    Dave, how did they find them? Did you have symptoms? PET or do they do a regular brain MRI on you?
  • Dapsterd
    Dapsterd Member Posts: 291

    mets
    Dave, how did they find them? Did you have symptoms? PET or do they do a regular brain MRI on you?

    thanx all
    Will find out about brain MRI on Tuesday Jan 17th, then Pet/Ct of whole body again late Jan.
    I guess I am on a two-month or so scan cycle these days.

    I found out about the mets dues to headaches, especially in the morning, and nausea/vomitting at the end, and "light" fatigue. So after about 3 weeks of headaches and a real bad day, and then the nausea, I went in the emergency room and the MRI showed the 3 tumors.
    After surgery and gamma knife, they did a full body pet/ct, which was clear of visual cancer.

    So this is why I am going to walk the beach and frolic in the sun, because we never know how long we have!!

    I will write on Wed (because I will spend night at Motor City Casino Tuesday!!) and let all know about the brain.

    Thanx all again.
    Dave
  • z
    z Member Posts: 1,411 Member
    Dapsterd said:

    thanx all
    Will find out about brain MRI on Tuesday Jan 17th, then Pet/Ct of whole body again late Jan.
    I guess I am on a two-month or so scan cycle these days.

    I found out about the mets dues to headaches, especially in the morning, and nausea/vomitting at the end, and "light" fatigue. So after about 3 weeks of headaches and a real bad day, and then the nausea, I went in the emergency room and the MRI showed the 3 tumors.
    After surgery and gamma knife, they did a full body pet/ct, which was clear of visual cancer.

    So this is why I am going to walk the beach and frolic in the sun, because we never know how long we have!!

    I will write on Wed (because I will spend night at Motor City Casino Tuesday!!) and let all know about the brain.

    Thanx all again.
    Dave

    Dave
    Sending all positive vibes your way. I hope you win at the Casino, that sounds like fun.

    I wish you well. Lori
  • catcon49
    catcon49 Member Posts: 398
    z said:

    Dave
    Sending all positive vibes your way. I hope you win at the Casino, that sounds like fun.

    I wish you well. Lori

    Have a great trip.
    cathy

    Have a great trip.

    cathy
  • Sandblaster
    Sandblaster Member Posts: 17
    Dapsterd said:

    thanx all
    Will find out about brain MRI on Tuesday Jan 17th, then Pet/Ct of whole body again late Jan.
    I guess I am on a two-month or so scan cycle these days.

    I found out about the mets dues to headaches, especially in the morning, and nausea/vomitting at the end, and "light" fatigue. So after about 3 weeks of headaches and a real bad day, and then the nausea, I went in the emergency room and the MRI showed the 3 tumors.
    After surgery and gamma knife, they did a full body pet/ct, which was clear of visual cancer.

    So this is why I am going to walk the beach and frolic in the sun, because we never know how long we have!!

    I will write on Wed (because I will spend night at Motor City Casino Tuesday!!) and let all know about the brain.

    Thanx all again.
    Dave

    Thats the ticket
    Yeah, I agree........go have a blast. I hope you can find comfort and peace while you are there. The same ole stuff will be here when you get back. Highest thoughts going out to you!!!!
  • Glenna M
    Glenna M Member Posts: 1,576
    Dapsterd said:

    thanx all
    Will find out about brain MRI on Tuesday Jan 17th, then Pet/Ct of whole body again late Jan.
    I guess I am on a two-month or so scan cycle these days.

    I found out about the mets dues to headaches, especially in the morning, and nausea/vomitting at the end, and "light" fatigue. So after about 3 weeks of headaches and a real bad day, and then the nausea, I went in the emergency room and the MRI showed the 3 tumors.
    After surgery and gamma knife, they did a full body pet/ct, which was clear of visual cancer.

    So this is why I am going to walk the beach and frolic in the sun, because we never know how long we have!!

    I will write on Wed (because I will spend night at Motor City Casino Tuesday!!) and let all know about the brain.

    Thanx all again.
    Dave

    Casino
    Have a wonderful time at the casino!!

    Thinking positive thoughts that all will be well on the latest MRI.

    Stay strong,
    Glenna
  • Dapsterd
    Dapsterd Member Posts: 291
    Glenna M said:

    Casino
    Have a wonderful time at the casino!!

    Thinking positive thoughts that all will be well on the latest MRI.

    Stay strong,
    Glenna

    1-20-12 Gamma Knife Update-Stage IV
    Good Morning All!

    Well....this week I found out I have a new 2cm tumor on left side of cerebrum this time, Tumor Board is concerned the cancer is very active-it grew to this size in 3 months. I will undergo Gamma Knife next week as well as a full body Pet/Ct---hope cancer is not back and elsewhere because the gamma knife should take care of the brain quite well.

    The Board is talking maybe a clinical trial on a chemo pill that will cross the blood/brain barrier and keep future Mets at bay. We finally pulled out of my Onc that she thinks two years of life left for me is about right, that will get me 3.5 years from DX.

    At 48 yr old, I feel I will be on the far end of any experience/statistics, and go farther!!!

    WBR does looks like a very last alternative as far as I am concerned, too many issues with that.

    Keep you posted next week. Life is good !!

    Your friend---_Dave
  • Dapsterd
    Dapsterd Member Posts: 291
    Glenna M said:

    Casino
    Have a wonderful time at the casino!!

    Thinking positive thoughts that all will be well on the latest MRI.

    Stay strong,
    Glenna

    1-20-12 Stage IV Update
    Good Morning All!

    Well....this week I found out I have a new 2cm tumor on left side of cerebrum this time, Tumor Board is concerned the cancer is very active-it grew to this size in 3 months. I will undergo Gamma Knife next week as well as a full body Pet/Ct---hope cancer is not back and elsewhere because the gamma knife should take care of the brain quite well.

    The Board is talking maybe a clinical trial on a chemo pill that will cross the blood/brain barrier and keep future Mets at bay. We finally pulled out of my Onc that she thinks two years of life left for me is about right, that will get me 3.5 years from DX.

    At 48 yr old, I feel I will be on the far end of any experience/statistics, and go farther!!!

    WBR does looks like a very last alternative as far as I am concerned, too many issues with that.

    Keep you posted next week. Life is good !!

    Your friend---_Dave
  • Dapsterd said:

    1-20-12 Stage IV Update
    Good Morning All!

    Well....this week I found out I have a new 2cm tumor on left side of cerebrum this time, Tumor Board is concerned the cancer is very active-it grew to this size in 3 months. I will undergo Gamma Knife next week as well as a full body Pet/Ct---hope cancer is not back and elsewhere because the gamma knife should take care of the brain quite well.

    The Board is talking maybe a clinical trial on a chemo pill that will cross the blood/brain barrier and keep future Mets at bay. We finally pulled out of my Onc that she thinks two years of life left for me is about right, that will get me 3.5 years from DX.

    At 48 yr old, I feel I will be on the far end of any experience/statistics, and go farther!!!

    WBR does looks like a very last alternative as far as I am concerned, too many issues with that.

    Keep you posted next week. Life is good !!

    Your friend---_Dave

    Life is good!
    So good to see you here! haha...keep positive thoughts, Dave.
    I admire you and will tell 'life is good' to my mom :-D
    All best wishes.

    -iola