possible mets to spine

kersha
kersha Member Posts: 63
edited March 2014 in Colorectal Cancer #1
I am not new to this site but I do not post often. I read some of the posts and my heart goes out to each and everyone of you both patients and caregivers because it is only when someone is touched by this monster do we know what it really is like. I am a caregiver and would like to know if anyone has had experience with bone mets. My husband was dx June 2008 CRC and had a resection he also had PVE to liver in November of 08 and January 09. Went through folfox and folfiri. Recurrence in liver and lungs November 09 treated with xeloda avastin and oxali with good results with the tumors shrinking and no act. with pet/ct scan in Feb. He started a low dose maintenance of xeloda and avastin and Monday had a ct scan which showed a suspicious spot on T5. Would be seeing the onco tomorrow but was just curious as to if anyone has had mets to bone and what meds were taken and if they worked.

Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #2
    Bumping
    I think Butterfly23 had bone mets after several recurrences but in the 14 months I've been on the forum, I don't remember others. Butterfly23 has since died.

    Papajedi had suspicious spots that went away and I'll send him an email. He didn't have tx for them, tho. :-)
  • geotina
    geotina Member Posts: 2,111 Member
    #3
    Bone mets
    I think Rob (Robinvan) had bone mets and had radiation treatment. Check his "about me" page and perhaps you can send him a pm or maybe he will see this.

    Also, if I remember, Adrian's John had/has bone mets but he really does not post much so I'm not sure what treatment, if any, he had.

    Hopefully others will be on to offer more.


    Best wishes - Tina
  • kersha
    kersha Member Posts: 63
    #4
    dianetavegia said:

    Bumping
    I think Butterfly23 had bone mets after several recurrences but in the 14 months I've been on the forum, I don't remember others. Butterfly23 has since died.

    Papajedi had suspicious spots that went away and I'll send him an email. He didn't have tx for them, tho. :-)

    Thank you Tina and Diane for
    Thank you Tina and Diane for your input. We went to the onco. this a.m. and he was reading the report and just did not address it until my husband brought it up. I was like how could he not see it in the report when it was in the summary section. Up to this point I had liked this onco. now I have 2nd thoughts. Anyway he said we should not worry just yet. He ordered an MRI and said depending on the results we would go from there. I just hate this wait and see attitude. I want to know what the options are if it is positive and if negative then we are in the clear and it is a bonus. Anyway thanks again and all the best to you all.
  • robinvan
    robinvan Member Posts: 1,012
    #5
    kersha said:

    Thank you Tina and Diane for
    Thank you Tina and Diane for your input. We went to the onco. this a.m. and he was reading the report and just did not address it until my husband brought it up. I was like how could he not see it in the report when it was in the summary section. Up to this point I had liked this onco. now I have 2nd thoughts. Anyway he said we should not worry just yet. He ordered an MRI and said depending on the results we would go from there. I just hate this wait and see attitude. I want to know what the options are if it is positive and if negative then we are in the clear and it is a bonus. Anyway thanks again and all the best to you all.

    Bone Mets...
    Hi Kersha...

    Let's hope it is not a bone met.

    I had a "local recurrence" outside of the rectum in the vicinity of my original site. The tumour spread to my sacrum and took up residence there. Ouch! I had radiation in September which was very effective in knocking it back and I have been on Erbitux since, which seems to be holding the beast at bay. The long and short of it is that I have had no disease progression. Sometimes this is the best we can hope for.

    Try not to fill your mind with "what ifs". I know this is easier said than done but it is all part of living with this stuff.

    There are options if it turns out to be a met.

    Rob; in Vancouver
  • kersha
    kersha Member Posts: 63
    #6
    robinvan said:

    Bone Mets...
    Hi Kersha...

    Let's hope it is not a bone met.

    I had a "local recurrence" outside of the rectum in the vicinity of my original site. The tumour spread to my sacrum and took up residence there. Ouch! I had radiation in September which was very effective in knocking it back and I have been on Erbitux since, which seems to be holding the beast at bay. The long and short of it is that I have had no disease progression. Sometimes this is the best we can hope for.

    Try not to fill your mind with "what ifs". I know this is easier said than done but it is all part of living with this stuff.

    There are options if it turns out to be a met.

    Rob; in Vancouver

    Thank you Rob. Glad to hear
    Thank you Rob. Glad to hear that you have had no progression and hope it stays that way forever or at best for long long time. I try so hard to think positive but I also like to prepare myself for the worst. Jewan,that is my husband has to have an MRI but we have not gotten the date as yet. I know he would not be able to do the Erbitux because he is KRAS mutated so maybe the radiation. I would post with results after MRI. Thank you again.
  • johnsfo
    johnsfo Member Posts: 47
    #7
    geotina said:

    Bone mets
    I think Rob (Robinvan) had bone mets and had radiation treatment. Check his "about me" page and perhaps you can send him a pm or maybe he will see this.

    Also, if I remember, Adrian's John had/has bone mets but he really does not post much so I'm not sure what treatment, if any, he had.

    Hopefully others will be on to offer more.


    Best wishes - Tina

    met to spine
    Kersha,

    I second Rob, hoping there's nothing on the spine to worry about. My colon cancer spread to the sacrum, like Rob's, and here's a little information that may help -- either to ease your mind or to "file away" in case you need it.

    The most effective diagnostic tool was the CT scan. Specifically, by comparing the most recent CT scan with the one taken just before or after surgery, the docs were able to see the changes that clearly indicated a mass growing at the sacrum. (PET was inconclusive, as were bone scan and MRI.)

    Surgery was not possible for me -- with the mass growing through most of the sacrum too many nerves are involved and removing the sacrum just isn't possible without eliminating the ability to stand and walk. Your husband's docs are looking at a different area of the spine and all of that may differ significantly from the sacrum.

    I was treated with cyberknife radiation -- it has a high success rate for sterilizing cancers at the spine. That wasn't the case for me, though, and my cancer continues to spread.

    I had several doses of Avastin with 5FU and irinotecan -- the irinotecan made me so sick I discontinued the chemo.

    The pain from the sacral tumor is severe, and the growing tumor continues to cause numbness and loss of muscle tone and control throughout the pelvis. Trying to manage the pain is a job in itself, and there's little (nothing) to do to stop, slow, or reverse the nerve damage.

    That's my experience, others may have tried other treatments and had different results.

    So, I hope the suspicious image is just that and nothing more. I can fill you in on any of this in a PM if you'd like.

    Best wishes,

    John
  • kersha
    kersha Member Posts: 63
    #8
    johnsfo said:

    met to spine
    Kersha,

    I second Rob, hoping there's nothing on the spine to worry about. My colon cancer spread to the sacrum, like Rob's, and here's a little information that may help -- either to ease your mind or to "file away" in case you need it.

    The most effective diagnostic tool was the CT scan. Specifically, by comparing the most recent CT scan with the one taken just before or after surgery, the docs were able to see the changes that clearly indicated a mass growing at the sacrum. (PET was inconclusive, as were bone scan and MRI.)

    Surgery was not possible for me -- with the mass growing through most of the sacrum too many nerves are involved and removing the sacrum just isn't possible without eliminating the ability to stand and walk. Your husband's docs are looking at a different area of the spine and all of that may differ significantly from the sacrum.

    I was treated with cyberknife radiation -- it has a high success rate for sterilizing cancers at the spine. That wasn't the case for me, though, and my cancer continues to spread.

    I had several doses of Avastin with 5FU and irinotecan -- the irinotecan made me so sick I discontinued the chemo.

    The pain from the sacral tumor is severe, and the growing tumor continues to cause numbness and loss of muscle tone and control throughout the pelvis. Trying to manage the pain is a job in itself, and there's little (nothing) to do to stop, slow, or reverse the nerve damage.

    That's my experience, others may have tried other treatments and had different results.

    So, I hope the suspicious image is just that and nothing more. I can fill you in on any of this in a PM if you'd like.

    Best wishes,

    John

    Thank you John for your
    Thank you John for your input. I was trying to PM you but could not figure it out so maybe you can help me out here.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #9
    me too recent diagnosis
    I was just diagnosed today with bone mets (see my separate post on "scan results - not great - bone mets". I'm on a learning curve too so let's share information. My oncologist is talking biopsy followed by chemo. No radiation. But still putting a plan into action. I'm feeling reasonably optimistic....Let's hang in there together!

    Tara
  • AceSFO
    AceSFO Member Posts: 229
    #10
    kersha said:

    Thank you John for your
    Thank you John for your input. I was trying to PM you but could not figure it out so maybe you can help me out here.

    PM
    Hi, Kersha,

    I'm John's partner and just saw the posting here. To send him a private message, click on "CSN Home" at the top of the page and in the middle you'll see a column with a blue header that says "Connect" under there click on "New Mail" which will take you to your inbox, and at the bottom of that page is a button for "write a new message."

    That should do it! Best of luck to both of you. I might also add that I found a really useful book titled "The Power of Two" by Gerri and Brian Monaghan. It tells of his experience with cancer and how the two of them overcame it together. Parts are funny and it also has a really useful section on practical tips for caregivers. I think Amazon has it for about $15.

    Adrian

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