Topic: Husband recently diagnosed

Good Morning,
I'm Christine and my husband was diagnosed with CC on 4/22.  Completely devastating as he is so very healthy otherwise and always hyper vigilant with his health. We feel blindsided with this diagnosis as we weren't really given a chance to discover it sooner, it presented with upper right stomach pain only after it had basically engulfed his liver.

Anyway, we just spent a week in Rochester,MN at Mayo. What an amazing place. Unfortunately, he is not a liver transplant candidate. Our course of treatment is going to be Therasphere and then chemo. We will be going back to Mayo for this treatment. Does anyone have experience with this?  He has already had his mapping angiogram.

Another question I have is that although we haven't started treatment, he is extremely tired and sleeps a lot. I expect this after treatment but is this also just a sign of this hateful disease?  We have three kids and this just isn't their daddy. sad.

Ok, thanks...nice to "meet" all of you
C

Re: Husband recently diagnosed

Hi Christine,
So sorry to hear of your husbands diagnosis. I am not a candidate for chemo or radiation. I also am inoperable. Mine has spread from the bile duct to the liver and pancreas. What I can tell you is that typical of this cancer to spread before diagnosis and to have no real warning signs. I was diagnosed in \November and have to say that I feel better now then I did then. With the help of pain meds Hydromorphone and sleep aids to assure I get enough rest at night, I am doing well. I had a lot of trouble with the side effects of the pains meds. The constipation was giving me more pain then the cancer was. They now have me on Lactulose for the constipation and that is under control. I am up and about every day. I also have been doing lots of traveling within Canada to visit with family. It can and does get better once the situation is under control. We have 3 children as well. I am 49 years old. The children are older. Our oldest lives in Ottawa and he is 26. The other 2 boys are still living at home and attending University and community college they are 20 and 16 all boys. They are a huge support to me and my husband and they are handling things very well so far. I have a very upbeat attitude and I find this helpful for everyone.
Keep in touch and all the best to you and your husband!
Bonnie (Nova Scotia) Canada...

Re: Husband recently diagnosed

Dear Chrstine and Tom, welcome to our extraordinary famiy but sorry you had to find us. I cannot help with the treatment Tom will be receiving but you are at a wonderful Hospital for CC. I understand you feel like you have been hit with a baseball bat in the stomach, but I promise when treatment begins your fright will change to fight and so it begins. Tom is surely tired  from the invasion of the CC to his body which is fighting the CC and the pain. Is he on anything for pain? Unfortunately, CC doesn't seem to have a rhyme or reason, I have come to the conclusion it just picks .......the best! We have a SEARCH engine at the top of the page and if you type in Therasphere you will get a bunch of Posts on that subject that may help for that treatment. When does Tom start his treatment? Know that you have come to the right place with us and we look forward to hearing more and sending you and your family the best wishes ever. Please keep us updated as we truly care.

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: Husband recently diagnosed

Welcome Christine-
my husband is also not a candidate for surgery (in liver, lungs and lymph nodes)

he is also a dad to 4 kids and he's 44--this whole cancer gig is NOT
fair!!! i agree.

My husband was actually SUPER tired before chemo and just finished
his first round (9 weeks of gem/cis--2 on and one off)

the chemo has improved how he feels A LOT!  he had almost
no side effects (other than fatigue)

so, for now, he's doing pretty darn good!

have that hope that the chemo can make him feel better.

Re: Husband recently diagnosed

Hi Christine,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your husband. But I am glad that you've joined us all here as you have come to the right place for support and help, and I know that you will get tons of both from everyone here.

I can't help either with personal experiences to share on the treatments that you mention as my dad never had them. But many of the members here have had chemo or therasphere treatment and like Lainy says the search forum function will throw these discussions up if you search for them. And I know that some of them will be along soon to share their experiences of them as well. Have you looked at our chemo board? It can be found here and you will find a ton of posts and info there -

http://www.cholangiocarcinoma.org/punbb … .php?id=16

There is also a webinar on chemo that you may want to watch and it can be found here -

http://www.cholangiocarcinoma.org/media.htm

I know what you mean about being blindsided by your husbands diagosis, we all felt like that and I certainly did after hearing the news about my dad. But I know for sure that you will all feel a lot better once treatment starts for your husband and his fightback begins!

As to the tiredness, that is quite common and many people get the fatigue that you mention. My dad had it and he napped a lot during the day. Here is a link again that may be of interest to you -

http://www.macmillan.org.uk/Cancerinfor … tigue.aspx

Nice to meet you too! Please keep coming back here and let us know how everything goes for you and your husband. If you have any questions then ask away and we'll do what we can to help. And know as well that we are here for you and we care.

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Husband recently diagnosed

Hi Christine,

Welcome to the site and so sorry that you had a reason to find it.  You will find so much really good information here.  And as you can see by the previous posts, everyone is very willing to help in any way they can.

I went to the Mayo Clinic in Rochester, MN, for a second opinion a couple of years ago.  I saw Dr. Grothey and he was very nice and just confirmed to be that I was doing the things that he would have recommended as well.  That Mayo Clinic is a well-oiled machine and it just gave comfort to be there knowing that they really know what they are doing.

Please keep us posted on your husband's progress.  My thoughts are with you.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Husband recently diagnosed

Hi Christine,

I would like to welcome you to this site, but I am so sorry you had to find us. My daughter, Lauren, was 25 when diagnosed with CC. She is now 27. She has had many chemos, Theraspheres, and one surgery. She will be having the second part of her resection this coming Wed. When she was first diagnosed, she had right upper quadrant pain, got full after eating just a small amount, back pain, and was also tired. She had a huge tumor on her left side, 17cm. x 19cm. and a few smaller tumors on the right side. They did Theraspheres on the right side about 9 months after being on chemo from the beginning. They really didn't think the Theraspheres helped because spots still showed up on scans. It did work because on the first surgery when they went to take the smaller tumors out they were just dead spots! No active tumor in them at all. Her large tumor has shrunk to 11cm. x 8 cm. and is mostly dead with a small amount of activity in the middle. They are going to take out the whole left side. The tumor was wrapped around the vena cava before, but has pulled away since getting smaller. Her surgeon said he may still have to do reconstruction, but we are so happy she can have surgery. She was told she was inoperable when first diagnosed, but refused to believe that and continued with hope and determination that one day surgery would be possible. So, no matter how devastating things look in the beginning, miracles can occur from time to time. We are beyond grateful for Lauren's wonderful physicians and her care. She still has lots of hurdles to jump, but she is on her way. I wish the same for your husband. Please ask any questions you may have. I am an open book. Much luck and love to you both.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Husband recently diagnosed

Hi,
Since the info you provided is very limited and therefore I cannot truly recommend anything with sound judgement and lend you a hand.
However, if your husband never shows any fatigue or tiredness before he was diagnosed and all a certain he experienced fatigue and sleep a lot; this may or may not related to the illness. Call the Mayo Clinic and ask what you should do for him. May be he is worry  too much about  you and the kids and the future financial  responsibility  for the family ;he may be scare of this illness and do not know what to do;and all of these and more may play a role too.
In my situation, I never spoke to my wife about the seriousness of the surgeries when I had my resections;the side effects of chemotherapy that I had  ; I don't want her to worry about me. I only told my son if the worse case happened to me, what he should do to become "head of the family" and take care of mom and his sisters. My wife is the type of person who is afraid of going to see doctors or entering  hospitals. But as all you may know where I make my living in the past few decades. Strange ,isn't it ?
God bless.

God bless

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Husband recently diagnosed

OK, SO, Percy you teared me up on that one. What a caring man you are. You are not only a very intelligent man you are very caring about everyone and it shows. I HAD to know everything that was going on, that's me. To talk to your son as you did had to be one of the hardest things you had to do yet. I LUV you! Hope your family is having a great day today.

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: Husband recently diagnosed

Hi, Lainy,
Happy mother's day .
As you know,Gavin and me are the two male moderators on this message board;and Gavin is single I believe; so I am the only male moderator  and CCA patient who may see things from a different angle in dealing with the burden of being a patient of a chronic and may be terminal illness and  being at the same time a husband of a family of six who I have provided for them financially in the past few decades . Old school of  Chinese tradition and culture  which I grew up with dictated that a good husband must be  a good provider for his family. I notice other cultures  have the same scale too  in measuring the success of being a husband . This  comes first and anything else becomes secondary. It is not romantic but practical.  so it is an universal behavior for those who are in the same position as I am .

Through this message board,there are not many male patients provide their accounts of the  illness  as well as joining in for discussions of their thought and feelings. but  I can see  husbands or fathers who are patients of this illness will share the same feelings and the responsibilities  as I am to their families and most of us are just keep our feelings and thoughts  inside and try to deal with them  internally without affecting the normalcy of the family. yes, it is tough but I am sure that is part of our nature of being husbands and fathers.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Husband recently diagnosed

PCL1029:   You just hit a nerve. You are absolutely correct. Not many men(including me) comment.  We may read but not respond. And that is too bad.  I am 64 and have intrahepatic CC.  Found thru kidney stone. Had successful resection.  My parents were old school and did not want to share any medical to my sister or me.  Because of that experience I have chosen to be open with my children. They need to know. I do not know what my future holds but I plan to fight.

Re: Husband recently diagnosed

GHAMILTON, Your post is great. I NEVER hide things as you can probably tell. I feel the more one knows it is actually less scary. The whole family should be aware and a part of it. It even helps the children to understand more and not be so afraid.  It used to help both Teddy and I to talk, talk, talk! And the family need to be your fighting team. Hope you are doing well.

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: Husband recently diagnosed

Agree with what is being said re wanting to know everything that was going on etc. I am definitely in the camp of wanting to know as much as possible although my mum was not like that. I was with my dad at all of his meetings with docs, oncs etc and he said that I could ask anything I wanted if I wanted to know something. And yes Percy you are right, I'm single with no kids.

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.