Just want answers

lcarper2
lcarper2 Member Posts: 635 Member
edited March 2014 in Colorectal Cancer #1
I need help I have cancer in the right lobe of the liver in the bile duct of the liver and head of my pancres and have been told the surgery is not an option it is to risky and I would die on the table chemo is the only thing I can do . Going to see ONC friday morning and port is suposed to be out in that afternoon but I am worried as to why the ONC wants to see me 1st. I am getting more morphine for the pain and it is helping some. I am worried they are going to tell me it is moving to fast for even chemo to stop it. My husband is about to be let go on his job because the company is in reciever ship we can't live on unemployment the jobs are next to impossible to find now a days and I just am at my witts end I can't afford to have anything done now even the port co-pay I can't afford has anyone had this kind of spread into these major organs and survived I need answers soon...

Louann

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2
    Louann
    I heard you hurtin' so I came runnin'.

    It's upsetting to hear you hurt so bad, Louann.

    I had cancer in the liver (not bile duct)and it was about 9cm, so about the size of a small orange, they say. I have survived it so far - originally scheduled for a resection, but we had to switch to RFA (radio frequencey ablation) and they burned most of the tumor out - we took out the rest with the CyberKnife - where doctors place these gold bead markers around the tumor and the CyberKnife, using high intense radiation knocked out the tumor in 3 treatments.

    They are not taking your port out if you still have chemo, are they? Did I read that right?

    One thing you can do, is just to leave the port in (for now) and just continue to have it flushed monthly. One of my cancer centers would do that for $9 each time. You could more easily maintain it than have it removed - you can always do that later.

    Plus, if you're doing chemo, it would be better to have it remain until chemo was completed.

    I'm sorry you are hurtin' - if I think of anything else, I'll holler your name:)

    "If God brings you to it, God will see you through it", right?

    Love/Craig
  • dasspears
    dasspears Member Posts: 227
    #3
    You might ask this question...
    on the pancreatic cancer site. They might have more information. Just a thought. Keeping you in my thoughts!
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #4
    Sundanceh said:

    Louann
    I heard you hurtin' so I came runnin'.

    It's upsetting to hear you hurt so bad, Louann.

    I had cancer in the liver (not bile duct)and it was about 9cm, so about the size of a small orange, they say. I have survived it so far - originally scheduled for a resection, but we had to switch to RFA (radio frequencey ablation) and they burned most of the tumor out - we took out the rest with the CyberKnife - where doctors place these gold bead markers around the tumor and the CyberKnife, using high intense radiation knocked out the tumor in 3 treatments.

    They are not taking your port out if you still have chemo, are they? Did I read that right?

    One thing you can do, is just to leave the port in (for now) and just continue to have it flushed monthly. One of my cancer centers would do that for $9 each time. You could more easily maintain it than have it removed - you can always do that later.

    Plus, if you're doing chemo, it would be better to have it remain until chemo was completed.

    I'm sorry you are hurtin' - if I think of anything else, I'll holler your name:)

    "If God brings you to it, God will see you through it", right?

    Love/Craig

    craig
    I don't have a port took xeloda my mouth and now they are going to go for the big guns
  • Paula G.
    Paula G. Member Posts: 596
    #5
    Louann,
    My husband has it in
    Louann,
    My husband has it in his liver lungs and adrenal glad. He has been on Folfox and is now on Xeloda and avastin. So far he is stable. His CEA has gone up and he has another scan in June. I would see what treatment they want to put you on. If it is the bigger guns you will need a port. It could knock it down and work real good.Paula
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #6
    Paula G. said:

    Louann,
    My husband has it in
    Louann,
    My husband has it in his liver lungs and adrenal glad. He has been on Folfox and is now on Xeloda and avastin. So far he is stable. His CEA has gone up and he has another scan in June. I would see what treatment they want to put you on. If it is the bigger guns you will need a port. It could knock it down and work real good.Paula

    Paula
    I go to my onc friday and he is going to say chemo is my only option here . I have spoken to MD Anderson in Tx and I am going to ask him to do an ergent referal to them and we are starting fund raisers here to get me there I will fight this no matter what I have to do but just to take chemo and nothing else is not going to work for me...
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #7
    lcarper2 said:

    Paula
    I go to my onc friday and he is going to say chemo is my only option here . I have spoken to MD Anderson in Tx and I am going to ask him to do an ergent referal to them and we are starting fund raisers here to get me there I will fight this no matter what I have to do but just to take chemo and nothing else is not going to work for me...

    Hey Louann
    I never understood why your onc only gave you Xeloda from the start! Stage III with a huge tumor (soft ball size) that was on the outside of your colon and cancer in 19 lymph nodes should have meant FOLFOX. I'd question the onc and insist you get top shelf stuff!

    Every onc has some leeway on co pays and our hospital has a group that will pay co pays for low income people. My hospital co pays were all taken care of by this group and they're paying my almost $800 co pay for my last CT scan.

    Set up a Paypal account for you/ your fund raiser. I've seen people link to their fund raisers on Facebook and Carepages and then say they received donations from all over. :-)
  • geotina
    geotina Member Posts: 2,111 Member
    #8
    lcarper2 said:

    Paula
    I go to my onc friday and he is going to say chemo is my only option here . I have spoken to MD Anderson in Tx and I am going to ask him to do an ergent referal to them and we are starting fund raisers here to get me there I will fight this no matter what I have to do but just to take chemo and nothing else is not going to work for me...

    Louann, Louann
    Take a very big breath. Many times they want to do chemo first to shrink things and then surgery or radiation is an option. Look at my George, he has/had an extremely heavy tumor load in the liver and lungs and chemo worked very well. I thought perhaps I would be a widow by this time but guess what, didn't happen, in fact, George works full time. We still dont' have options, yet, but you never know what tomorrow holds. Make sure, like Diane said, that they give you the "big guns chemo". I know you have other medical problems so that may enter into it a little.

    Now I know you are a woman of faith, you know your Bible, so rely on that faith and it will get you through your appointment tomorrow and what lies ahead.

    I think of you often.

    Fondly - Tina
  • luv3jay
    luv3jay Member Posts: 533 Member
    #9
    Hey Louann!
    I had cancer
    Hey Louann!

    I had cancer spread to the liver and lungs and as far as I know I'm NED (new scans on the 17th to confirm). I believe the govt now picks up 65% of COBRA if you are let go from your job so please check into that for your insurance. Also social second income and medicare are fast tracked if you are stage 4, so check into that also. As always, you are in my prayers!

    -Sheri
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #10
    dianetavegia said:

    Hey Louann
    I never understood why your onc only gave you Xeloda from the start! Stage III with a huge tumor (soft ball size) that was on the outside of your colon and cancer in 19 lymph nodes should have meant FOLFOX. I'd question the onc and insist you get top shelf stuff!

    Every onc has some leeway on co pays and our hospital has a group that will pay co pays for low income people. My hospital co pays were all taken care of by this group and they're paying my almost $800 co pay for my last CT scan.

    Set up a Paypal account for you/ your fund raiser. I've seen people link to their fund raisers on Facebook and Carepages and then say they received donations from all over. :-)

    diane
    thank you I will look into that
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #11
    Louann
    Louann,

    I saw on Facebook that you are hoping to get referred to MD Anderson & are hoping for more answers there. I will pray that or something that will be helpful to you will work out, and soon. Also, that the finances will work out and for your hubby's job. Diane had a good suggestion, so that can hopefully be helpful for you.
    I hear the fear and stress in your post- I am praying for you to feel less afraid and to feel comforted.

    Hugs to you,
    Lisa
  • pf78248
    pf78248 Member Posts: 209
    #12
    Wish I had the answers you need
    Louann,

    I am so sorry you are in such pain and have all the other problems you are dealing with. I wish there was something we could all do to make everything better for you. I do agree if you can get to a place like M D Anderson you might find some treatment options that haven't been offered to you previously.

    My husband David, stage 4, was able to have a liver resection at M D Anderson after being told locally he was not a candidate. You or your doctor can refer you there but our experience was a much faster appointment with the oncologists assistance.

    I will keep you in my prayers and wish you a speedy answer to your needs. Don't give up hope! Too many care for you and wish you the best.

    Priscilla in San Antonio
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #13
    pf78248 said:

    Wish I had the answers you need
    Louann,

    I am so sorry you are in such pain and have all the other problems you are dealing with. I wish there was something we could all do to make everything better for you. I do agree if you can get to a place like M D Anderson you might find some treatment options that haven't been offered to you previously.

    My husband David, stage 4, was able to have a liver resection at M D Anderson after being told locally he was not a candidate. You or your doctor can refer you there but our experience was a much faster appointment with the oncologists assistance.

    I will keep you in my prayers and wish you a speedy answer to your needs. Don't give up hope! Too many care for you and wish you the best.

    Priscilla in San Antonio

    Priscilla
    I go to my onc tomorrow and will get the ball rolling to get refered to them ASAP and will go no matter what I have to do to get there ...will never give up the fight and God is in my corner...

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