stage 4 w mets to spine and lungs

butterfly23
butterfly23 Member Posts: 256
edited March 2014 in Colorectal Cancer #1
Hey everyone! Long story short, stage 4 colon cancer with mets to lymph nodes for the past year. I have done 12 rounds of 5fu, surgery, they back on maintenance chemo. I just found out it is now in an area of my spine and lungs. I have done 10 radiation treatments for he spinal area and will start chemo (xeloda, olyaplatin, and avastin) next week also. Does anyone out there have mets to the spine? I started out with a back pain, I thought I slept wrong, but the pain continued and do I got checked. Any info will do, I am not afraid to hear the bad stuff! My dr. said I am treatable, THAT'S ALL I NEED TO GET ME THROUGH! I have to admit when I heard it was in the bone, I immediately thought death sentence, which I haven't thought of before. I'm a very positive person, but this did set me back a little!

p.s. I HATE CANCER!!
KARYN:}

Comments

  • snommintj
    snommintj Member Posts: 601
    #2
    new treatment
    There is a new treatment for mets to spine, I think its a form of robot guided RFA. They just approved it a few weeks ago I don't know if it's for colon cancer mets but I don't see why not. I'm not as quick as I used to be so I don't remember the name of the treatment, but I remember that there were about 25 centers doing it now with intentions of having 50 by the end of the year. I'll try to remember the name and I'll post it later. Stay positive! There are currently 5 new treatments in clinical trials that seem to be having some form of success. Plus there are probably another 50 in the works. Good luck. Do you have facebook or myspace?
  • butterfly23
    butterfly23 Member Posts: 256
    #3
    snommintj said:

    new treatment
    There is a new treatment for mets to spine, I think its a form of robot guided RFA. They just approved it a few weeks ago I don't know if it's for colon cancer mets but I don't see why not. I'm not as quick as I used to be so I don't remember the name of the treatment, but I remember that there were about 25 centers doing it now with intentions of having 50 by the end of the year. I'll try to remember the name and I'll post it later. Stay positive! There are currently 5 new treatments in clinical trials that seem to be having some form of success. Plus there are probably another 50 in the works. Good luck. Do you have facebook or myspace?

    Thanks!
    Hi, thanks for the info. Like i said this is all new to me. I will look into that info. No, I don't have a myspace or facebook.
    Karyn:)
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #4
    Karyn
    Karyn,
    Sorry to hear that things have spread. John is so good at finding trials and information and sharing it with all of us. There is hope! Treatable is right!

    Take care.
    Aloha,
    Kathleen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #5
    snommintj said:

    new treatment
    There is a new treatment for mets to spine, I think its a form of robot guided RFA. They just approved it a few weeks ago I don't know if it's for colon cancer mets but I don't see why not. I'm not as quick as I used to be so I don't remember the name of the treatment, but I remember that there were about 25 centers doing it now with intentions of having 50 by the end of the year. I'll try to remember the name and I'll post it later. Stay positive! There are currently 5 new treatments in clinical trials that seem to be having some form of success. Plus there are probably another 50 in the works. Good luck. Do you have facebook or myspace?

    John
    John,
    Thanks for always sharing with us. Hope is alive!
    Aloha,
    Kathleen
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #6
    I think we can all agree
    I think we can all agree with your p.s.!!

    As long as you are willing to fight, and your doctor is willing to fight, you can do it! It is reassuring to hear there are new methods to go after the mets to the spine. Please keep us posted on how you are doing, and what methods you try.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #7
    Stay positive
    Karyn,

    I can tell you're a positive person. Your lovely smile in your picture is a testament to that.

    I'll be praying for a good treatment that will do the trick.

    *hugs*
    Gail
  • JONinAPPLEVALLEY
    JONinAPPLEVALLEY Member Posts: 17
    #8
    A quick follow up question for Karyn....
    Karyn,

    Your attitude is absolutely wonderful! I know that you will prevail! I was wondering if you noticed any increase in your CEA when they discovered the activity in your bones. In addition to your back pain, did you incur any additional symptoms? Thanks Karyn
  • butterfly23
    butterfly23 Member Posts: 256
    #9
    JONinAPPLEVALLEY said:

    A quick follow up question for Karyn....
    Karyn,

    Your attitude is absolutely wonderful! I know that you will prevail! I was wondering if you noticed any increase in your CEA when they discovered the activity in your bones. In addition to your back pain, did you incur any additional symptoms? Thanks Karyn

    Hi
    Hi jon. Actually how I found out about the cancer in the spine was, I had felt like I had pulled muscle, I am a hairdresser and have still been working and thought I pulled it some how, or maybe slept on it wrong. After a few days I went to the er to get checked, hoping for some muscle relaxers. They took a cat scan because of the cancer history and that's how they found it. That's also how they found it in the lungs too. I was due for my cat scan with my own dr. in 2 more weeks anyway, but it gave me a head start on treatment! So, I don't know if my cea count was different then because it happened soooo fast. I did 10 radiation treatments and start xeloda olyaplatin and avastin in a week!
    I wish you well!
    Karyn
  • butterfly23
    butterfly23 Member Posts: 256
    #10
    tootsie1 said:

    Stay positive
    Karyn,

    I can tell you're a positive person. Your lovely smile in your picture is a testament to that.

    I'll be praying for a good treatment that will do the trick.

    *hugs*
    Gail

    Hi
    Hi Gail

    Thank-you for your kind thoughts! Positive attitude is a HUGE part of beating this horrible disease!!!

    Karyn:)
  • butterfly23
    butterfly23 Member Posts: 256
    #11
    Kathryn_in_MN said:

    I think we can all agree
    I think we can all agree with your p.s.!!

    As long as you are willing to fight, and your doctor is willing to fight, you can do it! It is reassuring to hear there are new methods to go after the mets to the spine. Please keep us posted on how you are doing, and what methods you try.

    Hi Kathryn with a "Y"
    Yes, I will keep everyone posted. I don't seem to see to many of us with mets to the spine, So I will let everone know what's going on. So far I have had 10 radiation treatments for the spine. Next, I will start chemo, xeloda olyaplatin and avastin for the lungs. I will keep in touch!
    Karyn with the "Y" :)
  • JONinAPPLEVALLEY
    JONinAPPLEVALLEY Member Posts: 17
    #12
    butterfly23 said:

    Hi
    Hi jon. Actually how I found out about the cancer in the spine was, I had felt like I had pulled muscle, I am a hairdresser and have still been working and thought I pulled it some how, or maybe slept on it wrong. After a few days I went to the er to get checked, hoping for some muscle relaxers. They took a cat scan because of the cancer history and that's how they found it. That's also how they found it in the lungs too. I was due for my cat scan with my own dr. in 2 more weeks anyway, but it gave me a head start on treatment! So, I don't know if my cea count was different then because it happened soooo fast. I did 10 radiation treatments and start xeloda olyaplatin and avastin in a week!
    I wish you well!
    Karyn

    Thanks Karyn. I bet your
    Thanks Karyn. I bet your new line of treatment will be extremely effective!
  • robinvan
    robinvan Member Posts: 1,012
    #13
    butterfly23 said:

    Hi Kathryn with a "Y"
    Yes, I will keep everyone posted. I don't seem to see to many of us with mets to the spine, So I will let everone know what's going on. So far I have had 10 radiation treatments for the spine. Next, I will start chemo, xeloda olyaplatin and avastin for the lungs. I will keep in touch!
    Karyn with the "Y" :)

    Hi Karyn
    I'm stage 4 (dx Aug 2004) with a recent "local recurrence" in the vicinity of the sigmoid which has spread into the sacrum (lower spine at rear of pelvic cavity). I'm still coming to grips with the implications and treatment options (radiation planning session this morning).

    I don't recall hearing from many in the past with bone involvement, either mets or local spread.

    I'm anticipating a radiation plan of 15 treatments followed up be chemo. I should learn more about the radiation schedule after meeting with the radiation technicians this morning. I'm anxious to get it started as I have had some very nasty "nerve" problems and pain developing over the past few weeks.

    I'll keep you posted through this board as I learn more.

    All the very best... Rob; in Vancouver
  • luv3jay
    luv3jay Member Posts: 533 Member
    #14
    Here's hoping for the best
    Here's hoping for the best for you! The good news is that you are still treatable!! Stay positive and keep your head upward!

    -Sheri
  • Fb489
    Fb489 Member Posts: 69
    #15
    robinvan said:

    Hi Karyn
    I'm stage 4 (dx Aug 2004) with a recent "local recurrence" in the vicinity of the sigmoid which has spread into the sacrum (lower spine at rear of pelvic cavity). I'm still coming to grips with the implications and treatment options (radiation planning session this morning).

    I don't recall hearing from many in the past with bone involvement, either mets or local spread.

    I'm anticipating a radiation plan of 15 treatments followed up be chemo. I should learn more about the radiation schedule after meeting with the radiation technicians this morning. I'm anxious to get it started as I have had some very nasty "nerve" problems and pain developing over the past few weeks.

    I'll keep you posted through this board as I learn more.

    All the very best... Rob; in Vancouver

    stage 4
    I have rectal cancer that mets to hip bone, needed a hip replacement.
    Good luck with your treatment
  • Unknown
    Unknown
    #16
    This comment has been removed by the Moderator

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