Topic: My husband has it too

My husband Chris was diagnosed on 4/10. Wow! What a blow that was. It still doesn't seem real. He's 50 years old with no other health issues. His doctor discovered elevated liver enzymes during a checkup. Got worked up for hepatitis but those tests were negative. Anyway, ended up getting an MRI and it was determined he had tumors in his liver with lymphadenopathy. Further testing determined it was ICC stage IV. Inoperable and incurable.
We decided to start the recommended chemotherapy (Gemzar and Xeloda) and his symptoms have been alleviated, liver enzymes down, bilirubin almost normal now after 2 rounds (6 weeks).  Checked into possibility of stent placement but bile duct blockages are too high up in liver to be effective.
Now that he's feeling better (no more itching) we are planning on seeking additional treatment at a center with more experience with this cancer.
Wanted to say that this website has been a blessing to us. We get lots of information as well as the knowledge that we are not alone. Its very comforting. Thank you all so much for sharing your stories.

Dianne

Re: My husband has it too

Dianne,

Welcome to this group. We really do feel for you and with you. I am 56 with intrahapatic CC with lymphadenopathy. The folks on this site are so experienced and knowledgeable. It is a real comfort. Please let your husband know that there are lots of people here sending prayers, wishes and sharing his pains and concerns.

Fortunately, my bilirubin has never been abnormal to this point. I had a few weeks where other enzymes spiked a bit, but they headed back down.

Please let us know how he progresses and if there is anything we can do. Again, our prayers are with you and your husband.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: My husband has it too

Dear Dianne, welcome to our extraordinary family but sorry you had to find us.  Glad to hear Chris is doing better but you are so right about finding a Hospital where they treat a lot of CC. CC is still rare and many Medical Professionals have still not even heard of it. But here, you will find family, advise or a place just to vent. We are all CC survivors be it with the Cancer or as a CC Caretaker. Wishing you the very best and please keep us posted 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: My husband has it too

Hi Dianne,

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 have joined us all here as I know that you will get tons of support and help from all of the great members here. And if you have any questions at all then please just ask away and we'll do what we can to help in answering them.

That is good to hear that your husband is responding to his chmeo treatment and also that the dreaded itching has gone. Itching, grrrr..... my dad went through that as well before he got his stent placed. And yes, getting Chris seen by a major cancer centre that has experience of dealing with CC and patients with CC is an excellent idea. Here are some links that may be of use to you.

List of major treatment centres in the USA -

http://www.cholangiocarcinoma.org/major … enters.htm

And here is a list of doctors and treatment centres that was created by the members here -

http://www.cholangiocarcinoma.org/punbb … hp?id=3126

Hopefully these will be of use to you. And yes, you are not alone anymore. We are all here for you and know what you are going through right now, and we care.

My best wishes to you and Chris,

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: My husband has it too

Hi Dianne,

I just wanted to welcome you to this site. I am sorry you had to find it. You have a lot of friends here that are ready and able to help you. We are all in this together whether we are caregivers, family members or the person with CC. I hope you find a treatment center you trust and feel comfortable with. All the best to you and Chris.

-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: My husband has it too

Thank you all so much for your kind words of support.  Sometimes while doing the research it's easy to sink into hopelessness and when that happens, I come here to get a much needed dose of positivity.  It sure is nice to connect with people who understand.

Re: My husband has it too

I must admit, I'm rather disappointed.  My husband, Chris had a CT scan on Friday and the oncologist said that everything looks the same.  We're amazed by this, due to the fact that he feels so much better after 2 cycles of chemo.  Bilirubin is normal now, all liver enzymes are much improved.  He (Chris) believes that we should continue along with this treatment, because as long as he's feeling better, why rock the boat?  These other more aggressive treatments carry risks and we are 'risk-averse' people in general.  Oncologist has the attitude that next scan (after 2 more cycles of gem/xeloda) will probably show some shrinkage of the tumors because the symptoms have improved so much.  I'm not sure what to think or how aggressive to get at this point.  Any thoughts?

Re: My husband has it too

Dianne

I pray that everything works out for your husband. My husband lost his battle 8 days ago after fighting for 10 months. All CT scans showed everything was the same...no change. The chemo started making him weaker so it was decided he would do a drug study. Then my husband took the Xeloda & everything multiplied by threes. It didnt happen til the 2nd round of taking it.
Everyone reacts differently on each drug. So I pray that your husband continues to stay the same or shrinks.
Best of Luck!!!

Brenda

Re: My husband has it too

Hi Dianne,  This disease can be very aggressive so to have no change after 2 cycles is good, and for Chris to be feeling better is great. Sending positive thoughts that the tumors start shrinking now! Hugs. Nancy

Loving my husband from afar.

Re: My husband has it too

Thanks for your replies.  It's so great of you guys to take the time to encourage me, just when I need it most.  Brenda, please accept my deepest sympathy on the very recent passing of your husband.  My heart aches for you and your family in this most difficult time.  I pray that your pain is eased by your wonderful memories of him and the knowledge that he is now at peace.
Nancy, thanks for your positive thoughts.  We try to have them ourselves but the negative ones crowd them out sometimes! I just hope we're doing the right thing. We sure are enjoying the good health he's had lately and are very appreciative of it every day.

Re: My husband has it too

Hi Dianne, I feel for you, my husband has CC as well, he is only 28..... He has never had a problem with biliruben but our story is very similar to yours, we found high liver enzymes at a check up because his stomach was bothering him. They told him he may have hepatitis and a CT scan showed tumors. We ended up being tossed around here in Eastern Canada for a couple months with nothing done so we went to a great doctor in Milwaukee to have surgery... turns out after spending all of that money (that is not insured) the cancer has spread to his diaphram and he is inoperable at this point. The wonderful doctor in Milwaukee still has hope and is keeping in contact with us as we have come home to do chemo where it is "free". We have gone through 4 rounds of chemo, he goes every two weeks, but the chemo that he does makes him really sick for one week after. We haven't had another CT scan yet but will have one at the end of next month...... after saying all of this I just want you to know that you are not alone and I know how hard it is to stay positive... but in the end you have to, I find the more the weather sucks the worst he feels after chemo.. I really think when he is depressed from things like the weather, or what is happening with our business the worse his chemo affects him. So keep your chin up and enjoy the summer smile I hope your next CT shows something positive, just a tiny bit of hope from a doctor can help stay positive as well! Good luck

Re: My husband has it too

Dear Jessica, I didn't realize you went to Milwaukee. We were visiting our children there when everything hit quickly and we too used a fabulous Doctor/Surgeon at Columbia Hospital, Dr. Lyle Henry. He had bought my husband, Teddy 5 1/2 years! Our 2 week visit turned in to almost 3 months! Your story shows how important attitude is and I know how anxious you are for those scans. We call that scanxiety!
You never know how strong you are until "strong" is the only choice you have!
Tough times never last, tough people do!

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: My husband has it too

Despite the scan results, I am glad he is feeling better. Sending love and prayers your way.
Hugs,
Roni
ronidinkes@yahoo.com or you can find me on facebook