are we doing enough??

pumpkin6028
pumpkin6028 Member Posts: 7
edited March 2012 in Colorectal Cancer #1
My mom was diagnosed with stage 4 colon cancer with mets in liver in april 2011. Wow - you never think this can happen to you, but I was so glad to find this site and find others who are living this same nightmare. I am her only child age 42 and she just turned 65. She was a single mother, and she and I have always been bestfriends. My mom just became a grandmother for the first( and only) in 9/09, she retired 5 yrs ago after working so hard for so many years, took care of my grandparents for 2 1/2 years before they both passed in 9/10. And was ready to start really enjoying her grand baby and all the fun things retirement should bring. And then this - out of the blue - she had just climbed the lighthouses of the outer banks on NC. A routine colonoscopy (her 2nd one - 1st in 2006) found the cancer she had surgery less than a week later and it had already spread to the liver??? so fast how does this happen?? I feel it was the removal of her gall bladder in 3/09 that had something to do with it - I'ver read studies on line. BUt no one will listen to me in the med world her in Jax. And there is really nothing we can do about that now. ( but I do believe that people who have ther gall bladders out should be checked more regularly for colonn cancer) does anyone feel this way?
I am so scared - I have tried to get another opinion on surgery candidate from md anderson - everyone says the same thing about standard of care - we just started 3rd chemo regime now on erbitux, camptosar and 5fu combo. At what point do we do something radical to try to save her?? The erbitux is making her face so rashy - I've read other posts about how to cope, has anyone found a moisturizer that works for the dryness??
I have gone to every chemo and I will be by her side every step of the way. I guess my question is are we doing enough??? what else can we do, while waiting to see if this new drug is working

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    Sorry to hear about your Mom
    I just read part of your profile and saw this "tumors on liver 65% coverage - went to mayo clinic jax was told not canidate for surgery, standard of care would be the same everywhere".
    I've seen this posted so often on here. I'm stage IV CC, dx in Feb 2004. Similar situation with liver. I went to Sloan Kettering (as have a few others on here). There are doctors there who use HAI pump therapy with GREAT success. I'm not sure if many oncologists don't know about it, don't know how to do it, or what but its HIGHLY effective in treating liver mets.

    I'm kind of busy so I'll have to get back to this post but I just wanted to say welcome aboard for one, and if possible, ask about HAI pump therapy and if they say it's no good, get to NYC and Sloan Kettering for another opinion.
    -phil
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    Phil has some good advice
    Phil has some good advice and can share his experience with you when he gets back with you.

    From the chemical side of things, you are getting 1st Line drugs administered that are highly effective at controlling cancer.

    The fact that your mom is a stage IV, is why the mets are where they are at...it's a late diagnosis so the cancer has spread to other organs...that's what staging is....stage IV means that the primary cancer has spread to distant sites and/or organs...by definition, that's what it means.

    But the treatment you have going is sound and if you could do a surgical procedure like the one Phil will explain to you, that helps the success tremendously.

    Phil has been at this for 8-years...and I'll have been at 8-years in just a couple of months...I've done many surgeries, chemo and radiation and have personally had cancer 3x now, but have walked away each time.

    Just stay with it and hang in there....

    -Craig
  • tommycat
    tommycat Member Posts: 790 Member
    #4
    It's a confusing time
    So many and so few options. There are many on the Board who can help you better than I can, but I wanted to say welcome.
    Hope things improve!
  • pumpkin6028
    pumpkin6028 Member Posts: 7
    #5
    PhillieG said:

    Sorry to hear about your Mom
    I just read part of your profile and saw this "tumors on liver 65% coverage - went to mayo clinic jax was told not canidate for surgery, standard of care would be the same everywhere".
    I've seen this posted so often on here. I'm stage IV CC, dx in Feb 2004. Similar situation with liver. I went to Sloan Kettering (as have a few others on here). There are doctors there who use HAI pump therapy with GREAT success. I'm not sure if many oncologists don't know about it, don't know how to do it, or what but its HIGHLY effective in treating liver mets.

    I'm kind of busy so I'll have to get back to this post but I just wanted to say welcome aboard for one, and if possible, ask about HAI pump therapy and if they say it's no good, get to NYC and Sloan Kettering for another opinion.
    -phil

    Thank you all for responding
    Thank you all for responding to my post. Doctor mentioned radiation spheres if erbitux doesn't work.
    It's encouraging to see you. I will definitly look into the HAI pump therapy and ask her doctor.
    Thank you again for for taking the time to respond.
    It's really nice to have people to talk to.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
    pumpkin6028 said:

    Thank you all for responding
    Thank you all for responding to my post. Doctor mentioned radiation spheres if erbitux doesn't work.
    It's encouraging to see you. I will definitly look into the HAI pump therapy and ask her doctor.
    Thank you again for for taking the time to respond.
    It's really nice to have people to talk to.

    Not a problem
    That will be $5 please...
    ;-)
    I have been on Erbitux since 2005 also and have had very good success with that. I went through the rash, it gets better over time but hopefully your Mom won't need to be on it too long.
    -p
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #7
    PhillieG said:

    Not a problem
    That will be $5 please...
    ;-)
    I have been on Erbitux since 2005 also and have had very good success with that. I went through the rash, it gets better over time but hopefully your Mom won't need to be on it too long.
    -p

    Did you have to take
    Did you have to take minocyline for the rash to get better. Mine was so bad after the first treatment they decided to skip the second treatment. The minocycline is helping but I still have it. I don't know if I should even be doing it since there is no visible cancer. Maybe be I should save it for if I have a recurrence.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #8
    janderson1964 said:

    Did you have to take
    Did you have to take minocyline for the rash to get better. Mine was so bad after the first treatment they decided to skip the second treatment. The minocycline is helping but I still have it. I don't know if I should even be doing it since there is no visible cancer. Maybe be I should save it for if I have a recurrence.

    Yes
    I still take minocycline.
    Hmmm, having "visible" cancer and having cancer are kind of far apart I think. You could (or could not) have cancer on a microscopic level and not know. You could be totally clear and not know it. It's impossible to know 100% either way. The question you must ask yourself is "Do you feel lucky? Well...do ya..Punk!?" Sorry about the Punk comment, I went off on a Clint/Dirty Harry thing....

    The question you must ask yourself is "are you comfortable with whatever you decide?". I know that is not real helpful, it's sort of like saying you're on your own Pal. Most doctors will guide/push you toward chemo. They make money on it, and chemo can also get rid of your cancer. BUT, chemo may not prevent you from having a recurrence. You just don't know...

    I've yet to be NED. Mostly I don't care. I'm not sure how well I'd like the roller coaster ride of being clear and sweating things out which I'd likely do. I know that I'm fine with me staying under care and doing other dietary things to help out. I do know I'd be less than thrilled if I stopped chemo and had it comeback.
    But that's ME.
    Only YOU can figure out what's best for YOU.
    -phil
  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #9
    PhillieG said:

    Yes
    I still take minocycline.
    Hmmm, having "visible" cancer and having cancer are kind of far apart I think. You could (or could not) have cancer on a microscopic level and not know. You could be totally clear and not know it. It's impossible to know 100% either way. The question you must ask yourself is "Do you feel lucky? Well...do ya..Punk!?" Sorry about the Punk comment, I went off on a Clint/Dirty Harry thing....

    The question you must ask yourself is "are you comfortable with whatever you decide?". I know that is not real helpful, it's sort of like saying you're on your own Pal. Most doctors will guide/push you toward chemo. They make money on it, and chemo can also get rid of your cancer. BUT, chemo may not prevent you from having a recurrence. You just don't know...

    I've yet to be NED. Mostly I don't care. I'm not sure how well I'd like the roller coaster ride of being clear and sweating things out which I'd likely do. I know that I'm fine with me staying under care and doing other dietary things to help out. I do know I'd be less than thrilled if I stopped chemo and had it comeback.
    But that's ME.
    Only YOU can figure out what's best for YOU.
    -phil

    Thanks Phil. No offense
    Thanks Phil. No offense taken on the "Punk" remark. I am a huge Clint Eastwood fan.
  • pumpkin6028
    pumpkin6028 Member Posts: 7
    #10
    tommycat said:

    It's a confusing time
    So many and so few options. There are many on the Board who can help you better than I can, but I wanted to say welcome.
    Hope things improve!

    Thank you
    Thank you very much for taking the time to respond.
    It is so nice to have this site to vent.
    I read your story, glad to know things can improve.
    I'm sure your twins were able to cheer you up along the way - I know my 2 year old gives my mom and me strength, he makes us laugh when we want to cry, it's hard to be sad with him around. God did send him as a blessing, and we are so grateful. And grateful for everyday we have together.
    Thanks again
  • tommycat
    tommycat Member Posts: 790 Member
    #11
    pumpkin6028 said:

    Thank you
    Thank you very much for taking the time to respond.
    It is so nice to have this site to vent.
    I read your story, glad to know things can improve.
    I'm sure your twins were able to cheer you up along the way - I know my 2 year old gives my mom and me strength, he makes us laugh when we want to cry, it's hard to be sad with him around. God did send him as a blessing, and we are so grateful. And grateful for everyday we have together.
    Thanks again

    One more thing
    One more thing Pumpkin....have you scheduled your colonoscopy? Your insurance will pay for it now---at age 42---because you have a 1st degree relative with the disease.
    From one mom to another, take care~

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