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  • #44293
    gavin
    Moderator

    Hi Ziggy,

    I am sorry to hear what your husband is going through right now with everything. My dad went through a lot of the things that your husband is right now, various pain issues, the tiredness and the napping during the day. And also the up’s and down’s as far as the days goes, I think this is quite common, but I so hope that your husband will have some more up days rather than the down ones.

    As to the Onc, if you or your husband does not think that this oncologist is not doing all that they can, or that they are not experienced enough in dealing with CC patients, then I agree with Lainy in that perhaps it is time to look for another one.

    My best wishes to you and your husband,

    Gavin

    #44292
    lainy
    Participant

    Ziggy, I am so sorry for what is going on but I am happy that you and your husband are communicating so well, it helps to be on the same page. Have you thought about a 3rd opinion? You can get one, you know. You get them until you are satisfied/comfortable with the doctor. Mu humble opinion is to look for an ONC who has had experience with CC. If it is the worst prognosis at least he will know what to do to make your husband comfortable and if its good news, he will have ideas for you to try.

    #44291
    ziggydog
    Participant

    Hi – my husband is losing weight – last week he lost 6 lbs.,(since this began in July he has lost about 60lbs) his pain comes and goes but he is constantly tired. He sleeps or rests most of the time – this is not due to depression either – he went through a couple days last week of total “in the dumps and not caring” but we have talked a lot about it. His spirits have been better lately but his body is exhausted. I think our onc is not overly knowledgeable about cc – just my opinion. He is willing to work with us but he doesn’t seem to have any fresh ideas.

    #44290
    lainy
    Participant

    I have not seen anyone on this site go to Hospice because of high markers or bilirubin. Can you tell us what other symptons are going on and are there other reasons the doctor is giving up? Something is missing here. Is your husband in pain, loosing weight, very tired, etc.

    #44289
    ziggydog
    Participant

    Hello – we saw my husband’s doctor last Friday – he basically said “hospice care” however I mentioned trying another chemo F5 which is what we are currently doing. The doctor’s reasoning for having little hope is due to my husband’s tumor marker # and his liver function. His tumor marker # keeps rising and his billirubin # is rising. I don’t know what to think – any advice???

    #44288
    floridamom
    Member

    usually when CC is inoperable it usually has to do with the portal vein or hepatic artery being involved but I agree with the others that you can never have too many opinions. Myron Schwartz @ Mt Sinai is my surgical oncologist and has been know to answer even non patient questions via email. Therapies evolve all the time so never stop researching or asking different doctors. They dont all know the same things. CC is not a common cancer so make sure your oncologist has experience with it.
    Staci
    Jax, FL

    #44287
    gavin
    Moderator

    Hi Ziggydog,

    Here is a link on stents that may be of interest to you.

    http://www.surgeryencyclopedia.com/A-Ce/Biliary-Stenting.html

    I hope all goes well for the meeting tomorrow and please let us know how you get on.

    Best wishes to you and your husband,

    Gavin

    #44286
    marions
    Moderator

    Ziggydog…..Good luck with your appointment tomorrow. You might also want to contact Cathy’s physician. Each case is individual however; a physician with extensive knowledge of this disease is what you are looking for. It may just be that even though your husband’s disease is quite advanced within the liver other important vessels may not be affected by this cancer. I believe that only a qualified transplant physician will be able to determine this.
    High calcium levels and high serotonin levels have been shown to be prominent with this cancer. There have been some early studies conducted however; follow-up research has not been conducted.
    Good luck and best wishes,
    Marion

    #44285
    jathy1125
    Participant

    Ziggydog- I have posted on here many times that I am a cc survivor because of a transplant (I really had 2). My miracle was at Barnes-Jewish St. Louis, MO. rated nine in the nation. My doctor was Dr. William Chapman who is in the top 5 doctors in the nation. I was diagnosed at age 53 with no symptons except itchy on July 31, 2008. I was in Dr. Chapmans care within 24 hours and my miracles never quit happening. There is a criteria to be met to qualify for transplant, but until you are told by the most expierenced centers (Barnes or Mayo) no, don’t give up. If you would like more of my story and expierence feel free to call (618-567-3247). My story is so full of hope and care. Keeping the prayers your way, Cathy

    #44284
    lainy
    Participant

    Dear Ziggydog, we have a seach engine at the top of the page and you can type in any word, like, stent and many posts will pop up on stents or go to google and it will explain what a stent is. There are various reasons for stents, mainly to keep the bile flowing. It is not that easy to say that you are going to do a transplant with or with out the doctor. We all know that transplants are huge Miracles but the patient must be in the guidelines established for the transplant.
    We do recommend 2nd and even 3rd opinions from different doctors until you feel comfortable with the doctor you pick. Good luck on everything and please keep us posted.

    #44283
    ziggydog
    Participant

    Hi – thanks for all the words and support. My husband’s fatigue was indeed the first sign that something was wrong back in March/April. Even since my last post only two days ago he is starting to feel almost constant pain – he cannot get comfortable. He started taking pain meds for the first time since this all started. I’m trying to educate myself but still feel there is so much I don’t know such as what is a stent? We were told that there is no evidence of cancer in the bile duct just in the liver which has made us wonder about a transplant. I have been in contact with New York Presbyterian Weill Cornell Center. Is anyone familiar with them. We’ve decided to pursue the transplant option with or without our doctors support. We meet with him tomorrow – I’m curious as to what his plan is. My husband is currently on Gemzar. Another question – is high calcium common in cc. My husband has had high calcium throughout this ordeal and the doctor has indicated that it is part of cc. Any thoughts. Thanks again for all of your comments –

    #44282
    nk
    Participant

    Hi Ziggy
    Welcome.
    My soulmate also had fatigue long before he was diagnosed.
    Good nutrition will help.
    Take care
    nk

    #44281

    Hi Ziggy,

    What chemo regime is your husband on? Does he have any stents in place to relieve any blockages? Why does your doctor think a transplant isn’t a viable option? does it involve the blood vessels?

    My mum was on 11 cycles of gemox (gemcitabine & oxiplatin) and she never really had any adverse side effects. The time she had her chemo, her stents were patent for almost 18 months.. so I would think chemo definitely helped. I also think your husband should start trying alternate therapies (homepathy or ayurvedic, etc).. my mum started homeo and ayurvedic too late, that’s what I think.. I’ve heard of these alternate therapies working.

    I feel that his fatigue could be because his liver has taken a beating because of the disease as well as the chemo. He can also start taking milk thistle and dandeloin tablets from Nutrilite, which helps in the functioning and regeneration of the liver.

    Varun

    #44280
    darla
    Participant

    Our situation was much the same as what Marion has described. Thinking back the fatigue and some leg pain was there long before other symptoms and diagnosis. We also at first attributed it to age, etc. Jim was 62. Yes, early detection is need as this is apparently a very slow growing cancer, just well hidden and generally undetectable until it is far advanced.

    Darla

    #44279
    marions
    Moderator

    Susan…..In retrospect it is apparent that fatigue appeared long before my husband had been diagnosed with his disease. We attributed it to aging (he was 61 when diagnosed,) long work hours, stress (he was an attorney with a large practice,) and sleep apnea. If only there were a simple test because, that would have been the time to address the cancer. But it took many more months and the appearance of many more symptoms before the diagnoses was made. We so badly need early detection for this cancer.
    Best wishes,
    Marion

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