UPDATE****We Need Prayers

cbcardb12
cbcardb12 Member Posts: 84
edited March 2014 in Colorectal Cancer #1
I'm writing this from my iPhone on the way back from Syracuse, NY. My husband was scheduled for his third chemo treatment. It didn't happen. Instead his doctor told him that ge has from maybe 4 weeks to 6 months to live. She said that his bilirubin us 12, his CEA is over 20,000. I'm in a car with no tissue, so trying hard not to cry to much. I might have to use my shirt. Right now I am in shock and really can't even pray but I know that's what will help me through this. I know God has a plan for all of us, but right now I am so devastated, I can barely think straight. Than again, I am a very practical person and in a little while we will have to start making plans. We are on the verge if having to give up our home. Damn. This is just so hard! My friend is driving and she wants me to just fall apart, but I can't yet. We're too fall from home. Well, I guess that's all for now. I can't be politically correct right now. I need your prayers right now.
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Hi all,

We just got back from the dr's office, and CB says this was most definately different from yesterday. First, his bilirubin is 12, but instead of a CEA level of 20,000, it's actually 2,000. Chemo brain strikes again. So, after talking all last night, and getting a good nights sleep, I asked CB what he would do if it was me that had gotten this news. He said that he would fight it with everything he has, do research, call any and everybody to try to save my life. My question to him is why he doesn't feel that his life is as valuable? Why he is willing to chuck it in, settle his affairs, and go sit somewhere and wait to die? I always talk about you all. I talk about how Lisa advocated for herself and got the insurance company to let her use Gemzar. Or eventhough Craig has had setbacks, he always advocates and puts himself in the position to get help when needed. Or how Kimby nearly died last year. How there are people on here that was one step from hospice, and was able to fight back. That's what I want for CB, and I believe that's what he now wants for himself. The doctor said that she wasn't sure of what else she could do. CB remembered reading about a test that uses the original biopsied piece of liver and can be used to see what chemo drugs his particular liver is sensitive to. It's called the Karis dx diagnostic test. She is going to fast track that to our insurance companies and see if we can get that done. I again mentioned Gemzar, and she of course said again that it wasn't approved for colorectal cancer. I told her about Lisa and her doctors advocating and eventually getting it approved. I am going to try that also, and she did say that if the test came back that he is sensitive to Gemzar, then she would be able to give that to him. In the meantime, he will continue to go to her weekly, and will treat any symptons that might arise. He still has almost 60 of the Xeloda pills, and she told him not to take them right now. At this point he is in pretty good shape. He still has an appetite, and still gets around pretty good. She said that it was possible that as the cancer progresses, he would lose his appetite, and be totally fatigued. He could have fluid build up, which they could relieve. She also said that it is possible that the chemo drugs are contributing to the jaundice.Because he is still seeking treatment, he is not eligible for Hospice, and he doesn't feel like he's ready for that step. I am going online to seek out other doctors and facilities. MSK says they can't do anything for him because he has already exhausted all of the chemo treatments. If any of you have any ideas, please do not hesitate to share them. For us, and others on the board. I'll update later with what I find out. Have a great day everyone!

Thanks,

Carolyn
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Comments

  • coloCan
    coloCan Member Posts: 1,944 Member
    How the hell does the doctor know your husband"s expiration date
    How can any doctor state with such certainty what your husband's did? I know his comments devastated you but see another onc/doctor, if possible, as soon as you can for another "opinion" or prognosis. I hope your current doctor is utterly wrong....steve
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Carolyn
    I'm going to pray for y'all right now.

    Diane
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Hi CarolynI am sorry to
    Hi Carolyn

    I am sorry to hear this. Did your husband's onc say why the chemo treatment was not given? Is another opinion a possibility? Of course I don't know the particulars of your husband's case but there are many on this board who have greatly outlived prognoses. Take good care. You and your husband are in my thoughts.
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Carolyn
    I am so sorry to hear that CB is facing this. I don't really have any words at all. I can only tell you that I continue to pray for you both.

    Amy
  • cbcardb12
    cbcardb12 Member Posts: 84
    coloCan said:

    How the hell does the doctor know your husband"s expiration date
    How can any doctor state with such certainty what your husband's did? I know his comments devastated you but see another onc/doctor, if possible, as soon as you can for another "opinion" or prognosis. I hope your current doctor is utterly wrong....steve

    Hi Steve
    CB had to tell the oncologist not to cry. She was so devastated. She hoped that this treatment would work. She dis say that she isn't God and couldn't say with certainty how long he had left, but based on all of his labwork, this was her best prognosis. We could probably get him to a new dr, but it takes a minute to get approval for any new treatment and I don't know how long he has. She stated that a liver transplant wouldn't help because the cancer is still in his blood stream and would still come back. Ther you have it.

    Carolyn
  • cbcardb12
    cbcardb12 Member Posts: 84

    Carolyn
    I'm going to pray for y'all right now.

    Diane

    Thanks
    Thanks Diane. You were one of the first people to greet me on here. I appreciate all your prayers for us.

    Thanks,

    Carolyn
  • cbcardb12
    cbcardb12 Member Posts: 84
    AnneCan said:

    Hi CarolynI am sorry to
    Hi Carolyn

    I am sorry to hear this. Did your husband's onc say why the chemo treatment was not given? Is another opinion a possibility? Of course I don't know the particulars of your husband's case but there are many on this board who have greatly outlived prognoses. Take good care. You and your husband are in my thoughts.

    Chemo wasn't given
    Because she felt it would not help at all and would just give him the normal after chemo effects and possibly make it worse for him physically. I can tell that he is slowing down and this would probably damage the liver even more.

    Thanks,

    Carolyn
  • cbcardb12
    cbcardb12 Member Posts: 84
    mom_2_3 said:

    Carolyn
    I am so sorry to hear that CB is facing this. I don't really have any words at all. I can only tell you that I continue to pray for you both.

    Amy

    Thanks Amy
    We had so high hopes that we would be able to come up there to MSK. I was looking forward to meeting you. Right now it doesn't look like it's meant to be.

    Carolyn
  • zenmonk
    zenmonk Member Posts: 198
    praying for a turn-around
    I am very sorry to hear this news.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    cbcardb12 said:

    Thanks Amy
    We had so high hopes that we would be able to come up there to MSK. I was looking forward to meeting you. Right now it doesn't look like it's meant to be.

    Carolyn

    many have amazed their doctors!
    Carolyn,

    I'm sorry to hear the news you and your husband were told. I am praying & my faith for believing is not based on the current "facts", CEA number, etc.- God is bigger than all of that. It is hard to know what His will is, but we will still pray for a full healing. I am thinking of and praying for you for strength and peace.

    Hugs to you,
    Lisa
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Carolyn
    Hi Carolyn

    I've followed some of your story and saddened by today's events. Sounds like your onc is feeling the pain as well...I'm sure she is very conscientious and is only giving you her best prognosis based on the facts that she has combined with her experience in the field.

    Just wanted you to know that I am sorry for where things are right now - and that we are all thinking of you right now.

    -Craig
  • cbcardb12
    cbcardb12 Member Posts: 84
    Sundanceh said:

    Carolyn
    Hi Carolyn

    I've followed some of your story and saddened by today's events. Sounds like your onc is feeling the pain as well...I'm sure she is very conscientious and is only giving you her best prognosis based on the facts that she has combined with her experience in the field.

    Just wanted you to know that I am sorry for where things are right now - and that we are all thinking of you right now.

    -Craig

    Thanks Everybody
    It has certainly been a difficult few hours. I'm at the airport now and I spoke with CB a little while ago. He sounds fine. He says he hasn't cried, and probably won't. He is not worried about himself, just me and our sons. He's already called a few of his friends and will start trying to sell his tools. He's a master carpenter and has over 30 years worth of dodads, so I know that this is something he can do for his family. I just don't know what to say. I pray that he proves the doctors wrong, and God will show him a miracle. I will pray unceasingly for the healing of my husband, so the cancer to be taken away. I will try to face whatever comes next, and to enjoy the time we have left. But to say it's hard is a true understatement and I will just have to work on this daily to get through it.

    Carolyn
  • Devasted
    Devasted Member Posts: 185
    cbcardb12 said:

    Thanks Everybody
    It has certainly been a difficult few hours. I'm at the airport now and I spoke with CB a little while ago. He sounds fine. He says he hasn't cried, and probably won't. He is not worried about himself, just me and our sons. He's already called a few of his friends and will start trying to sell his tools. He's a master carpenter and has over 30 years worth of dodads, so I know that this is something he can do for his family. I just don't know what to say. I pray that he proves the doctors wrong, and God will show him a miracle. I will pray unceasingly for the healing of my husband, so the cancer to be taken away. I will try to face whatever comes next, and to enjoy the time we have left. But to say it's hard is a true understatement and I will just have to work on this daily to get through it.

    Carolyn

    carolyn, i'm so sorry...
    carolyn,

    i'm so sorry to hear this. just want you to know we're thinking of you...
  • jillpls
    jillpls Member Posts: 238
    prayers for you now
    i hope and pray you feel Gods peace and comfort right now. His peace will help you have a clear mind and direction. Take care of yourself. Jill
  • HollyID
    HollyID Member Posts: 946 Member
    cbcardb12 said:

    Thanks Everybody
    It has certainly been a difficult few hours. I'm at the airport now and I spoke with CB a little while ago. He sounds fine. He says he hasn't cried, and probably won't. He is not worried about himself, just me and our sons. He's already called a few of his friends and will start trying to sell his tools. He's a master carpenter and has over 30 years worth of dodads, so I know that this is something he can do for his family. I just don't know what to say. I pray that he proves the doctors wrong, and God will show him a miracle. I will pray unceasingly for the healing of my husband, so the cancer to be taken away. I will try to face whatever comes next, and to enjoy the time we have left. But to say it's hard is a true understatement and I will just have to work on this daily to get through it.

    Carolyn

    Carolyn,
    I'm so sorry that you're having to go through this. I can't even imagine. Please know that my family and I will be praying for you and your family.
  • kimby
    kimby Member Posts: 797
    Carolyn
    I will absolutely pray for your family. I'm so sorry for what you are going through.

    Is it possible to get another opinion? Your current onc is saying that she can't help your husband anymore than she has. Maybe someone else can. All I know is that if she has given up, she can't help. You can't get somewhere you aren't even trying to get to. For whatever reason she has given up. Hope will get your husband much further.

    Prayers for sure, whatever you chose to do.

    Kimby
    Outwit. Outplay. Outlast.
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    kimby said:

    Carolyn
    I will absolutely pray for your family. I'm so sorry for what you are going through.

    Is it possible to get another opinion? Your current onc is saying that she can't help your husband anymore than she has. Maybe someone else can. All I know is that if she has given up, she can't help. You can't get somewhere you aren't even trying to get to. For whatever reason she has given up. Hope will get your husband much further.

    Prayers for sure, whatever you chose to do.

    Kimby
    Outwit. Outplay. Outlast.

    Carolyn
    I am so sorry I have been in your very spot and it is just unbeleavable to fathom. you and your husband our in my thoughts and prayers.

    michelle
  • lcarper2
    lcarper2 Member Posts: 635 Member
    kimby said:

    Carolyn
    I will absolutely pray for your family. I'm so sorry for what you are going through.

    Is it possible to get another opinion? Your current onc is saying that she can't help your husband anymore than she has. Maybe someone else can. All I know is that if she has given up, she can't help. You can't get somewhere you aren't even trying to get to. For whatever reason she has given up. Hope will get your husband much further.

    Prayers for sure, whatever you chose to do.

    Kimby
    Outwit. Outplay. Outlast.

    Praying
    to our heavenly father to take charge of this and know the bible says if he ask to be healed and believes in God he can be healed...
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Carolyn
    Dear Carolyn,
    I can understand your deep sorrow right now. I am so sorry you got this news. I will also pray for your entire family.

    Aloha,
    Kathleen
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    " I need your prayers right now"
    You got 'em and sending you a warm cyber {{ hug}} too. Thoughts are with you and your husband.

    -Pat