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UPDATE****We Need Prayers

cbcardb12
Posts: 85
Joined: Mar 2009

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

coloCan
Posts: 1956
Joined: Oct 2009

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

cbcardb12
Posts: 85
Joined: Mar 2009

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

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

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

Diane

cbcardb12
Posts: 85
Joined: Mar 2009

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

Thanks,

Carolyn

AnneCan
Posts: 3692
Joined: Oct 2009

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.

cbcardb12
Posts: 85
Joined: Mar 2009

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

mom_2_3
Posts: 965
Joined: Nov 2008

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
Posts: 85
Joined: Mar 2009

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

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

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

zenmonk
Posts: 198
Joined: Nov 2009

I am very sorry to hear this news.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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
Posts: 85
Joined: Mar 2009

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
Posts: 186
Joined: Jun 2009

carolyn,

i'm so sorry to hear this. just want you to know we're thinking of you...

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

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.

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

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

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

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's picture
angelsbaby
Posts: 1171
Joined: May 2008

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
Posts: 638
Joined: Dec 2009

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's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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
Posts: 827
Joined: Jan 2010

You got 'em and sending you a warm cyber {{ hug}} too. Thoughts are with you and your husband.

-Pat

Erinb
Posts: 295
Joined: Apr 2010

Your family will be in my thoughts and prayers.
Erin

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I think you should get a second opinion,your doctor shouldn't be giving up so easily.I will be praying for you,and your family.

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

I'm so sorry to hear that you and your husband are going through this. My thoughts and prayers are with you. Holding you, your husband, and family in the Light.
Aud

vhtqm1's picture
vhtqm1
Posts: 107
Joined: Feb 2010

when i was initially diagnosed the oncologist then said to me "get your affairs in order you have 30 days and if we treat you and were not even sure what we would treat you with due to your cancer being so aggessive and massive maybe 6 months?" well, that was November of 07. now, we can't ignore the elephant in the room and that is as you wrote the CEA being >20000 and Billirubin 12...this tells me the liver is becoming quite compromised. i've always believed and i've lived my life with this and that is "if God gives you the 'will' to keep fighting then don't waste such a wonderful gift and give it all you have." so, if your Husband desires to keep up the fight then maybe you can find (a different oncologist) or talk to this current one and get back into the fighting mode? you already have my prayers and i hope somehow you can find some peace through others here as they chime in.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Carolyn,

I'm so sorry about this news. I will be praying for you and CB and your family. It sounds like he has a very caring doctor. I will pray for a miracle!

*hugs*
Gail

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

I am so sorry for your news. Please know that many will be lifting you and CB in prayers for a miracle.

God bless you and your precious family.

Priscilla fro San Antonio

grammadebbie's picture
grammadebbie
Posts: 431
Joined: Jun 2009

Dear Ones,

My heart goes out to you both. I will continue to hold you and your family up in prayer. Don't have words to express my sorrow for what you are going through. God Bless You.

Blessings and Big Hugs,
Debbie

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

You are both in my prayers now.

-Sheri

dorookie
Posts: 1736
Joined: Jul 2007

I wouldnt be gettin rid of any tools just yet, dont give up, when that miricle comes he is going to be really mad at having to go out and buy all new stuff...

Keeping you and your family in my prayers

God Bless
Beth

AnneCan
Posts: 3692
Joined: Oct 2009

Carolyn,

I am really happy for you + your husband - it sounds like things are better than they sounded yesterday. You were so smart to ask your husband what he would do if it were you instead of him. Let us know his options as they reveal themselves, please. Also, I think Beth has a good point - you wouldn't want to sell those tools + then turn around + buy new ones! Take good care!

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Well, that sounds more positive. It seems your doctor is willing to try to find something that will help CB. I'll be praying he can get the test done, and that it will show a drug that can help.

*hugs*
Gail

eric38's picture
eric38
Posts: 588
Joined: May 2009

When you said the sea was 20,000 that was very disturbing. 2000 is pretty dang high but if you stumble onto a treatment that works I think 2000 is still controllable. Of course, the bilirubin levels are the most disturbing. People get turned sometimes just for that. These are the moments we all dread. But, as Kimby says, where there is life, there is hope and it's great that the hubby is not too sick yet and still has an appetite. I will definitely put in a good word for you with the man upstairs. I do believe he answers prayer. We may not always get the answer we want but we do get an answer. It sounds like the hubby still has a lot more fight left in him so that still leaves him with a chance.

God bless you,
Eric

eric38's picture
eric38
Posts: 588
Joined: May 2009

P.s.
I think cb is going to surprise the heck out of your doctors.

cbcardb12
Posts: 85
Joined: Mar 2009

Eric,

I feel the same way. I kind of got upset with him, because I couldn't understad why he was just accepting his "fate". I believe that as a children of God, we have every right to ask for, no demand total healing. I reminded him that he needs to ask for healing and work hard for it's manifestation. Don't ever give up. I told him, that he lost a lot of his stamina once he was given an "expiration" date. I asked him to throw all that nonsense out the window, and to focus totally on healing scriptures. And to truly believe that he will be healed. No, it may not come to pass, but I know that it can only help him in his journey.

Thanks,

Carolyn

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

I do believe your husband's recent turn is very similar to my sister's. Her billirubin is 10, and her doctors told her she has exhausted all chemo options. Please PM me if you have any questions. I will send you one as well. I hope you find someone that can still help him fight. It is not easy. Prayers for you and CB.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Carolyn,

I am joining you in prayer.

Lizzy

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