My wife diagnosed 2/2011
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Dear Joe,
I am very sorry indeed to hear of Debbie’s passing. Please accept my sincere condolences. Thinking of you and your family right now.
Gavin
Hello JOE. Please accept my sincere sympathies. My prayers and thoughts go out to you:
If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
Ihello everybody
Debbie lost her battle with this horrible disease this past Thursday. ” 7/14″ I will be praying for all of you and thanks for your support and prayers.
Joe
Thanks Kathy, I talked with the doc the day after your post and he gave her pantoprazole 40mg. She has not belched or vomited since. I wouldn’t say she hasn’t been nausea, but not to the extreme. thank you…
Joe,
I have an inoperable tumor – diagnosed in July 2009. During my first treatment of radiation and 24/7 chemo I was sick and nauseated all the time. None of the meds helped. After treatment was over it was discovered during a stent replacement that I had developed a ulcer on my esophagus. It only took four days of 40mg/day twice a day of prilosec to end the nausea. I also burped and belched a lot – but never in my entire life before treatment.
I’m glad you have local doctors who will work with bile duct cancer specialists. That’s a huge blessing.
Take care.
God bless.Kathy
joe….You might want to explain to the physician some of your concerns re: the nightly nausea? It may very well be related to lack of digestion. Are you using enzymes? How about Debbie’s bowel movements? Keeping regular has shown to decrease gas. Stool softeners may be helpful. What is Debbie’s caloric intake? And, what type of food does she eat?
All my best wishes,
MarionThanks to everybody… The docs vcisit was fine, a radiation treatment although we had a sick night. It aleays seems to be the early evenings and night when she is nausea. I don’t think she has ever been sick during the day, at least I don’t remember one. We have another radaition and chemo today. hope that goes good. one other thing; she has a slight twitch in her hands and her eye hand coordination seem worse at times?
thanks again
joeHi Joe,
Welcome to the site. Sorry that you had to find us all and I am sorry alsoto hear about your wife. But I am glad that you have joined us all here as you will get a lot of support and help from us all. How did you get on when you went to see the doctor yesterday?
My dad’s CC was also deemed inoperable from diagnosis due to it’s location as it was growing around the portal vein, and we were told that attempting surgery would have killed him. And the nausea was also an issue for him too. He tried a wide variety and combinations of meds for this with varying amounts of success. One of the reasons that he was having trouble with the various meds was that it was hard to keep them down due to the nausea so they weren’t getting the chance to work as they should. He was then given a type of med that he could dissolve under his tongue and that worked better for him.
I hope that you will keep coming back here and please feel free to ask any questions and we will all do what we can to help. And please keep us updated on how Debbies is doing.
My best wishes to you both,
Gavin
My MIL is being treat at Mayo Jackson by Dr Nguyen. They have been terrific! She’s unable to be operated on and has chosen to have no treatment of any kind. She suffers from nausea all the time and can’t find a med to work. She is entering hospice at Mayo Jacksonville for a few days to see if they can help her get it under control and help her since she is so weak and can’t take care of herself right now. Family is headed down but cant seem to get there fast enough. I will update when we find out what kind of meds works for us. I hope ya’ll find some peace soon for her. I am so sorry to hear about Debbie. We will pray for you all and hope she gets some relief.
Joe, it is not clear whether you have been able to contact Dr. Kato. I too was a patient of his and have the following info for you:
Dr. Tomoaki Kato, Chief, Division of Abdominal Organ Transplantation
Columbia University Medical Center
PH Room 14-105
622 West 168th St
New York, NY 10032
Phone: 212-305-5101
Fax: 212-305-5124
Secretary: Delia GarciaI would suggest contacting his secretary, Delia first, and I’m sure she will give you complete instructions about how to send the scan and report data.
By the way, I would have been considered ‘inoperable’, but for Dr. Kato. He’s operated on many patients that were considered ‘inoperable’ for a variety of reasons. In my case the primary reason was cardiac condition. I had several cardiac events during my 12 hour surgery, but the surgical team handled them with aplomb. No harm done! Don’t be too quick to accept inoperable without additional opinions for Debbie.
Sorry you had to find us and best of luck in your wife’s care.
Thanks Lainy… my name is Joe.
We tried several meds for the nausea and at fiest you would think it was working and then she would be sick. I read about a different one on here the other day and when we go to the docs I will get some. We have not talked about her bag filling with air yet. We go to the docs today. We are in Savannah Ga and we are going to memorial hospital, anderson cancer institute. She has never liked dairy products and does not have much or any. also when she belches it tastes like beer. Talking about beer she has never drank any alcohol… thanksDear Seapro, welcome to our wonderful family but sorry you had to join us.
It certainly sounds like you are doing all the right things and I hope you get some advise from Dr. Kato. Where is Debbie being treated? Have you talked to the ONC about the nausea as there are many Meds she can try for that. It sounds like the doctor did see her for the drain bag filling with air? My husband used to get a ton of gas and I took him off dairy which helped. Some times it just can’t be helped and I know it can be terrible! I am sending good wishes your way and please keep us posted, we care!Hello,
I have been a silent partener since February of this year. I have read alot on here and other sites on the web. Still having trouble getting around on the site, but learning. We are still struggling with the prognoses and as you all can imagine we are having good days and bad ones. I did write Kim on her personal web site to get some information about Dr. Kato… this is what I wrote Kim;
I have read several of your post to other with this terrible disease. My wife of 37 years was diagnosed with cholangiocarcinoma in February of this year 2011. We have been in the hospital several times trying stents, doing biopsies. The doctors have been great, I’m just not sure of their experience with this cancer. She was too sick to go anywhere else, at that time. We finally had an external drain that was working, the second one. We also had a blood infection from the bile. We have that under control now and I think we can try to get a second opinion. You said in one of your posts that Dr. Kato would look at the MRI, CT’s that they have done here and give his opinion. I know our doctors would share them as they have told me that they would when we trying to go to a large cancer facility, like I said before then she got so sick the doctors said we needed to something now.
She is 53 years old and was healthy until the day she was diagnosed. She has two tumors. The tumor does not appear large to me, the docs just say it is inoperable because where it is. They say it is wrapped around the main blood vessels that feed blood to her lungs, legs and trying to remove it would kill her. She is in her third week of radiation and chemo. The radiation is 5 days a week for 5 weeks and the chemo is one day a week for the same 5 weeks. After all the treatment and after everything settles down they will do some more imaging to see how we did with the treatments. I think then I would like to get another opinion before they move to the next treatment. how can I get our doctors to send the images to Dr Kato?
we are now complete with week three Chemo and radiation. She “Debbie” gets nausea and it is hard to pin point why… We will alway do the exact same thing and then all at once she will get sick. She has a lot of gas and the drain bag filled with air the other night? have not seen the doc since then.
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