November 17, 2010 at 5:59 am #44278slittle1127Member
Dear Ziggy – We’ve been dealing with the fatigue for much longer than we have even had a diagnosis. Fatigue was an earlier sign for us. If I remember correctly, I think our doctor said that even the cancer growing takes energy from the body, in addition to the body trying to fight it, the pain meds, etc. Haing in there. Blessings, SusanNovember 16, 2010 at 10:43 pm #44277jathy1125Participant
Hi Ziggy, Welcome, sorry you had to find this site though. I am a cc survivor. I am alive today because of a liver transplant (actually two). I know that transplant is not an option for most, but it is an option and a cure. What bothers me about your post is you said your doctor didn’t think it was an option, he should know wether it is or isn’t. I was very lucky because I was diagnosed at one of the best cc cancer centers, Barnes-Jewish in St. Louis MO. I did not need to get a second opinion, but in your guys case it cannot hurt. Two of the best cc cancer centers are Barnes or Mayo-Clinic. Don’t just accept your doctors word till you honestly believe he is God!! Good luck and lots of prayers- CathyNovember 16, 2010 at 8:35 pm #44276gavinModerator
The fatigue that you say your husband is experiencing is quite common here and my dad went through this a lot as well and he never had any chemo at all. My dad used to take naps quite a lot each day, sometimes a few each day and he got very tired quite easily. If you use the search function here this will throw up a lot of previous discussions surrounding fatigue issues. Is your husband taking amy other types of medications that can cause fatigue as well, such as pain meds?
Have you spoken with your husbands doctors about supplementing his diet with things such as Ensure drinks or other such products?
Best wishes to you and your husband,
GavinNovember 16, 2010 at 6:26 pm #44275ziggydogParticipant
Hi – I am in Maine and we had a second opinion from Dana Farber. My husband was on Gemzar and Cisplatin but made the choice to stop the Cisplatin. The doctors (both here and at Dana Farber) said chemo was the only way to go because they disease is “very extensive” in the liver therefore surgery is not an option. For his bloating it has been suggested that he gets “tapped” but that will offer only temporary relief. The toughest part at this moment is his INCREDIBLE fatigue. He cannot seem to stay awake for very long and I don’t know if this is the treatment or the disease. Is this common?November 16, 2010 at 5:43 am #44274slittle1127Member
Dear Ziggydog – Sorry that you have to face this monster called cc. It is so hard on the patient and the family members. I agree with what has been said about arming yourself with information so you can be a best advocate for your husband. There is a lot of information available on this site as well as on the internet about cc. Learn all that you can, come here often and share with us. Let us be one of the supports that helps you through this roller coaster ride. People who are going through it also are very helpful and understanding. Blessings to you and your family, SusanNovember 15, 2010 at 7:30 pm #44273gavinModerator
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husband, but I am glad that you have all joined us as you will get a ton of support and help from us all. Please feel free to ask any questions that you will have and we will all do what we can to help.
Information is power and Lainy is right when she says the best thing to do educate yourself about CC. We have an excellent search function at the top of the page that is very useful and will throw up a number of discussions surrounding many topics.
I look forward to hearing more from you.
My best wishes to you and your husband,
GavinNovember 15, 2010 at 7:17 pm #44272marionsModerator
ziggydog….I would like to follow Lainy and welcome you also. I am a strong believer in second or, even third opinions. And, most importantly you would want to make sure that the physician is very familiar with the disease of Cholangiocarcinoma. Not eating much and feeling bloated may be related to different causes however, you might want to rule out a lack of bowel movements. Additionally, is there something your husband prefers to eat over other things not appealing to him? If so, then I would try to use anything in order to help him keep his weight stable. Fats may present be problematic but, that is something you will be able to figure out through trial and error. As Lainy has mentioned you may want to share a few other things with us because, the members on this board are quite experienced and are always glad to share their thoughts.
Again, I am happy that you have joined us. Please, continue to stay with us.
MarionNovember 15, 2010 at 6:33 pm #44271lainyParticipant
Hi Ziggydog and welcome to our wonderful family. First I must say I really like your name, it makes me smile. We are so sorry to hear of another ‘youngster” getting CC. Can you tell us a little more, like where it is located and what the ONC suggests you do? Do you have any specific quetions that we can try to answer. The best thing you can do is to educate yourself on CC by reading our posts and looking it up on the Net. The best advocate for a patient is an informed one. Have you told your ONC about the bloat and not eating? What has been done to help him so far. Last, where are you located? Please fill us in with a little more details and know that we are here for you, you are not alone.November 15, 2010 at 5:49 pm #4327ziggydogParticipant
Hi – I have been reading the discussions on this site for several months and decided today to join on. My husband (age 48) was diagnosed in July. He has been going through chemo but it is showing no improvement. He can hardly eat much and he is quite bloated. We’ve asked our onc. about the idea of a liver transplant but he doesn’t think it is a viable option. I feel at a loss right now. Any words of wisdom would be greatly appreciated.
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