Topic: confused husband

Hi, my name is Dave. My wife was diagnosed with cc last month and just started on gemzar and xeloda this week. I am confused because the doctor said that there is nothing they can do but buy her time. She has multiple tumors the size of grapes all over her liver and is inoperable. her bile ducts are shot and she throws up a lot of bile evry couple of days, but She has no mets. Why I am so confused is he says she will pobably die within 6 months. then he says that if she responds to the chemo and the tumors shrink "who knows, maybe years" but then he says that a lot of people don't respond though. Then I have read on here that people had their tumors shrink, but passed away anyway, or that people didn't even do treatment and lived for years. I don't know what to expect and my wife goes back and forth from living for years and getting ready to die. Can someone give me a reasonable expectation or is this disease that unpredictable? The doctor says she is gonna die in the next couple of years, it just depends on how long. She is only 53 with no prior history of anything. She hadn't even going to the doctor for anything her whole life.  I am trying to get my head wrapped around this thing. Do we just figure she is gonna make it and live like that?

2 (edited by Karen Fri, 31 Oct 2008 07:35:15)

Re: confused husband

Dear Dave,
So sorry to have to make your acquaintance here.  I can totally relate to the turmoil you are feeling.  As you have determined everybody with this dreadful disease reacts differently and there is no one treatment.  My husband was also told he had months to live and we are now at a year anniversary from diagnosis.  He has had two different treatments of Cyberknife and next week he is getting another round.  We have had a year of constant rollercoaster rides with different symptoms.  Yes, figure she is going to make it.  A positive outlook means so much.  Prayers coming your way.
Karen

Wishing all God's blessings!

Re: confused husband

Hello Dave and welcome to the best little club in the world that no one wants to join. You might want to look up the posts by "Wayne".  He said there is a procedure at Mayo in Rochester, MN for those who have no mets. Perhaps your wife would be a candidate for this procedure. One thing you can count on with CC is that you can't count on it! We always say to get other opinions and make sure you have an aggressive Oncologist! Not sure what you mean by her bile ducts are shot. This is a great place to find answers and to vent. Please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: confused husband

Hi Dave,

I too am confused, mad, frustrated, angry, sad and distraught by this thing.  Two years ago, my husband beat NH Lymphoma.  Then in June, two days before our first son was born, he was diagnosed with this.  We were told he would not live to see Christmas.  His new oncologist said that if we can stay agressive, then we can add at least a year to his life.  But as we have recently found out, the chemo has dreadful side effects.  He is loosing his fingernails, can not eat (due to ascites that must be drained every 5 days), has dropped 20 pounds and didn't have 20 to spare. 

Basically, this sucks.  You guys are sure to go through all sorts of emotions every day and they can be draining.  It's ok to be mad, and it's equally ok to be happy.  Have a since of humor, we prefer sarcasim. Staying positive is very important.  And the biggest suggestion I can make, communicate with each other!

This next suggestion might be hard to swallow, but talk with your wife about her wishes for after her passing.  My husband and I have a lot of plans set already.  Whether he passes in a few months or a few years, he is comforted in knowing I am taken care of and that his wishes will be met.

Cancer sucks, Christine.

Christine B.

Re: confused husband

Dave,

What is your location and where is your wife being treated currently? It is really important to get a second, and sometimes third and fourth, opinion as there are more options for treatment:

Here are some of the posts by Wayne:

http://www.cholangiocarcinoma.org/punbb … hp?id=2032

http://www.cholangiocarcinoma.org/punbb … hp?id=2034

http://www.cholangiocarcinoma.org/punbb … hp?id=2048

You might also want to look into photodynamic therapy (PDT), see the following post:

http://www.cholangiocarcinoma.org/punbb … hp?id=1658

You might also want to look at clinical trials, many of them require no mets, see:

http://www.clinicaltrials.gov/

Patty

Re: confused husband

Dave,
Sorry to have to meet like this, but you have found the right place to be when dealing with this terrible cancer.  It is confusing & hard to understand how it can affect people in so many different ways.  CC is very unpredictable. You can only deal with it one day at a time. Know that there are a lot of people here to help & support you so keep posting & asking questions, there will always be someone here that can give you answers & suggestions. There will be a lot of decisions to be made. I will be thinking of you & your wife & hoping for the best for both of you.

Christine,
I am so sorry you and your family are going through this. You are right. This cancer really sucks!!!!! My husband was 62 & was healthy until the middle of July of this year. He passed away from CC on Sept 2. In his case it went fast & there was nothing that could be done. He just kept getting weaker & weaker, couldn't eat etc. It just snuck up on us & blindsided us. That said, it does seem to treat everyone differently.  There are many on this site that have had better luck than this & have had some success with different types of treatment. I am hoping that John will be one of them. It does sound like you have a good attitude & are heading in the right direction. Good luck to you & your family.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: confused husband

Thank you all for your responses.  It is very frustrating. I really don't know how I am supposed to feel. It sounds like what I am feeling is normal. It does help to know that you are not alone. My deepest struggle is that you all have very good advice, but my wife will not even discuss the whole situation. That is why I asked if it was ok to just go on as if everything was gonna be ok. She is acting that way, then she freaks out for a minute, and then goes back to acting like she is fine. We don't have any wills or plans "just in case".  Her brothers and sisters tell me I am "trying to bury her already" I can't even talk about it with her family without being accused of it almost being my fault.  Thank you all again so much. I really neeeded someone to talk to. I will reread your messages and talk to you again soon. Lord willing.  And I will pray for all of you as well.  Dave

Re: confused husband

Dave,
You are not alone in your frustrations. My case was just the reverse of yours. We did not know what we were fighting & some of his family thought I was keeping something from them. My husband wasn't positively diagnosised with CC until 1 week before he passed away. At that point we were told he had 6 months.  They thought I knew he was dying & wasn't telling them. Strange how these things work. We already feel so afraid and helpless & now everyone wants to put the blame on you! I guess under the circumstances, all of this is "normal"? We were not prepared for any of this either. No wills or anything. I just kept assuring my husband that he should not worry about any of it & that it will all work out. I did not want him to have that stress on top of everything else.  Like Christine, I did briefly bring up his wishes for if & when he passed. We had talked about it from time to time & I just asked him if that happened, was he certain that what we had discussed is what he wanted & he said it was. (His family didn't like that decision either, but that's another story!)  Other than that, we really didn't have time to plan for any of this. These decisions are ultimately for you & your wife to make & as hard as I know it will be, you have to try to ignore all of the others & do what is best for the two of you. Hopefully your wife will let you know when she is ready to talk about things. All of this is just more than any of us were planning for or are prepared to handle & all we can do is deal with it the best we know how.  I will be thinking of you & both you & your wife will be in my prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: confused husband

Dave....I would also like to add to the support given by others that though some daily activities may be limited by the disease, it is usually best for the person with cancer to keep living as much like they did before as possible.  Continuing to be a responsible adult can give the person with cancer a sense of confidence and control.  Given in to feelings of dependence may make your wife feel even more helpless and like a victim.  Also, because it is hard to get mad at cancer (the real cause of their frustration and sadness,) sometimes, the person with cancer may take the angry feelings out on the person closest to her.  But most of all you need to remember to also reach out for help.  I have learned that one can feel real alone when someone we love is coping with cancer.  I have known of many who have joined a support group where they have gained new insights into what is happening, get ideas about how to cope, and it helps knowing that one just isn't alone in a situation as the one you are experiencing.
Also, we are so fortunate to have Dr. Giles.  You can find him on the top bar under "Patient Support" scroll down to" Ask Dr. Giles".   It is so easy to drop a note and find comfort with his wonderful replies.  Remember, that you are not alone in this and that you have many ears and open hearts available to you.  Sending tons of good wishes your way.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER