calling all long term stage IV lurkers

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  • Shayenne
    Shayenne Member Posts: 2,342
    #22
    ittapp said:

    welcome, stay aboard and ask
    welcome, stay aboard and ask any questions, or offer support.when were you diagnosed? let us know how your scan comes out. I will pray for you. God Bless, Patti

    Hi Ida!!
    Welcome to our family, please feel free to post with us, we hope to be of some comfort and hope to all you who are to shy to post, we are still a family for you here, and would love to get to know you all :)

    Everyone have an awesome holiday who don't post as well :)

    Hugsss!
    ~Donna
  • Shayenne
    Shayenne Member Posts: 2,342
    #23
    ittapp said:

    welcome, stay aboard and ask
    welcome, stay aboard and ask any questions, or offer support.when were you diagnosed? let us know how your scan comes out. I will pray for you. God Bless, Patti

    Wooooops!!
    Edited for the LAG!!!!
  • willjulia
    willjulia Member Posts: 18
    #24
    Lurkers
    Hi,
    I'm more of a lurker than a poster (wife Stage IV, diagnosed 8/09). I've read a lot of comments from a lot of people. None of what I've read here sounds like whining to me. It sounds like real people going through real life issues and sharing their real thoughts, fears, questions, etc. It's a healthy way to vent, to learn, and to support.

    My wife started out on Folfox but it wasn't effective. The tumors (liver and lungs) grew in number and size and spread. She started on Folfiri and yesterday's scan showed that there are no new tumors and the existing tumors have not grown. That's good news and will help us tremendously to enjoy the holiday season and enter the new year with hope. The docs are about to add Avastin.

    Peace and love,

    Dan
  • Shayenne
    Shayenne Member Posts: 2,342
    #25
    willjulia said:

    Lurkers
    Hi,
    I'm more of a lurker than a poster (wife Stage IV, diagnosed 8/09). I've read a lot of comments from a lot of people. None of what I've read here sounds like whining to me. It sounds like real people going through real life issues and sharing their real thoughts, fears, questions, etc. It's a healthy way to vent, to learn, and to support.

    My wife started out on Folfox but it wasn't effective. The tumors (liver and lungs) grew in number and size and spread. She started on Folfiri and yesterday's scan showed that there are no new tumors and the existing tumors have not grown. That's good news and will help us tremendously to enjoy the holiday season and enter the new year with hope. The docs are about to add Avastin.

    Peace and love,

    Dan

    Hi Dan!!
    It's great to meet you! Avastin is a good drug that starves the tumors, it helps with them by not sending any blood supply to the tumors which they feed on. I been on Folfiri with Avastin since February this year, and luckily haven't had any new growths. Soon, the onc will be taking me off the Irinotecan and leaving me on just Avastin and 5fu, she said many patients of hers have been living many years like this, but I don't want to stay on chemo, I'd like to watch for other options myself, and maybe get a second opinion.

    We're glad to have you here, and don't ever lose hope, there's alot of chemo cocktails out there, if one doesn't work, they can try another! I wish you both the best!

    Hugsss!
    ~Donna
  • ittapp
    ittapp Member Posts: 383 Member
    #26
    willjulia said:

    Lurkers
    Hi,
    I'm more of a lurker than a poster (wife Stage IV, diagnosed 8/09). I've read a lot of comments from a lot of people. None of what I've read here sounds like whining to me. It sounds like real people going through real life issues and sharing their real thoughts, fears, questions, etc. It's a healthy way to vent, to learn, and to support.

    My wife started out on Folfox but it wasn't effective. The tumors (liver and lungs) grew in number and size and spread. She started on Folfiri and yesterday's scan showed that there are no new tumors and the existing tumors have not grown. That's good news and will help us tremendously to enjoy the holiday season and enter the new year with hope. The docs are about to add Avastin.

    Peace and love,

    Dan

    Thanks for coming on and
    Thanks for coming on and posting and welcome, I was on Folfox with response in the omentum and peritenium, lymphnodes..It was shrinking the liver tumors by a little and then it stopped working in the liver, they switched me to Folfiri, or cpt11 it's also called. Anyway just started on Wed. and am praying for good results. I am meeting with an Interventional Radiologist on Tues. to talk about Sir spheres. God Bless, Patti
  • fringetree
    fringetree Member Posts: 65
    #27
    lurker until a couple of days ago!
    My dad was diagnosed stage IV three months ago. I have been living with my parents (or in hospital rooms!)ever since. He has mets in his liver (unresectable), pancreas, and lung. He was given one half dose and one full dose of 5'FU with oxaliplatin. Then, about three weeks into chemo, we had to take him to the ER one night because he passed out from pain while trying to use the bathroom. He had been bleeding a bit for a while, but after the "episode" it got much worse. A new CT scan revealed that the tumor had grown significantly and his performance status is not good, so his doctor stopped all treatment. My dad seems to be at peace with this, but I am still struggling with this decision. I just can't let go of the idea that there is something more we could try. I started reading the boards after I heard this news, but I lurked for a long time because I didn't want to bring everyone down! Finally, I decided I just needed some support, and I have definitely received that here. Love to all of you!
  • grammadebbie
    grammadebbie Member Posts: 464
    #28
    fringetree said:

    lurker until a couple of days ago!
    My dad was diagnosed stage IV three months ago. I have been living with my parents (or in hospital rooms!)ever since. He has mets in his liver (unresectable), pancreas, and lung. He was given one half dose and one full dose of 5'FU with oxaliplatin. Then, about three weeks into chemo, we had to take him to the ER one night because he passed out from pain while trying to use the bathroom. He had been bleeding a bit for a while, but after the "episode" it got much worse. A new CT scan revealed that the tumor had grown significantly and his performance status is not good, so his doctor stopped all treatment. My dad seems to be at peace with this, but I am still struggling with this decision. I just can't let go of the idea that there is something more we could try. I started reading the boards after I heard this news, but I lurked for a long time because I didn't want to bring everyone down! Finally, I decided I just needed some support, and I have definitely received that here. Love to all of you!

    So Sorry
    Dear fringetree,

    There is no reason for you to go thru this alone. We are all here for the good and bad. This is a family that understands and will always be here for you. I'm so sorry to hear about your Dad. I've not experienced what your dad is going thru so can only lend emotional support to you. There are alot of wonderful people here who can help you with the specifics. I don't understand why all treatment has been stopped. I know that 2nd and 3rd opinions are very important. Also, there is no reason for your dad to be in pain..you sometimes have to be very demanding to get this taken care of. If your doctors won't address it, have a pain specialist come on board. Just wanted to let you know that you are not alone and you can share anything here without fear. Your family is blessed to have you. Big hugs to all. I will be praying for you all.

    Blessings,


    Debbie (gramma)
  • fringetree
    fringetree Member Posts: 65
    #29
    grammadebbie said:

    So Sorry
    Dear fringetree,

    There is no reason for you to go thru this alone. We are all here for the good and bad. This is a family that understands and will always be here for you. I'm so sorry to hear about your Dad. I've not experienced what your dad is going thru so can only lend emotional support to you. There are alot of wonderful people here who can help you with the specifics. I don't understand why all treatment has been stopped. I know that 2nd and 3rd opinions are very important. Also, there is no reason for your dad to be in pain..you sometimes have to be very demanding to get this taken care of. If your doctors won't address it, have a pain specialist come on board. Just wanted to let you know that you are not alone and you can share anything here without fear. Your family is blessed to have you. Big hugs to all. I will be praying for you all.

    Blessings,


    Debbie (gramma)

    Tears :)
    Gramma Debbie,

    You brought tears to my eyes, and I thought I was all dried up for the day! It's a good thing, though :) The doctor's explanation for stopping treatment is that he is too weak to withstand it and that once the cancer has progressed this far, the chemo just doesn't work well anyway. I think I will post a new thread to see what the Stage IV's have to say about that!

    One positive thing to report is that other than the "incident", so far my dad is not really in any pain (knock on wood). Every once in a while he gets some cramping, but that's it. He is not taking any painkillers, even though the hospice nurses push it like candy!

    I do feel like I have been given the "gift" of cancer sometimes, because taking care of my father has been the greatest privilege of my life and it has brought us closer than ever.

    Hopefully one day I will be able to help someone on here the same way you have all helped me already.

    Love to all
  • mvancott
    mvancott Member Posts: 8
    #30
    ittapp said:

    What a horrible thing to
    What a horrible thing to hear, my Dr.said about two years and I fell apart. Where else is your husband have it in the body? How old is he? have they talked about any other treatment besides chemo, assuming he has chemo? Not to be nosey just wanting to know if I can help. I am cc with mets to liver and had it in my peritenum and omentum lymphnodes. Chemo knocked out what was in the b elly but has grown in the live with a few more new spots. So, Dr. changed chemo. Praying for this one to do the trick. God Bless, Patti

    He is 44 stage 4 colon
    He is 44 stage 4 colon cancer with mets to liver, lung, and bone(sacrum) He is getting radiation now for the bone tumor and we have an appt with sloan kettering in 2 weeks.

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