Discussion Board Forums General Discussion The rollercoaster ride of CC

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  • #51227
    mystar
    Participant

    Dear Ash,
    I will pass on my experience in the high amonia level experience. My husband had only two (2) really bad experiences with the high level and both were terrifying. He too was prescribed lactulose which does work somewhat, but the side effects are not so good. He was then prescribed Xifaxan. This medication helps take care of the bacteria that causes the high amonia levels and he has not had another episode in 5 months. If you talk to your Mom’s doctor and he agrees that this might help, be sure to ask for SAMPLES. This medication is approximately $1400. for 1 month (60 pills). It is covered by most Medicare Part D providers if the treating physician will complete their form that simply states the alternative medications (lactulose) is not getting the job done. As for the smoking, I have tried to get my sister and brother to quit – they are still at it, my brother has had to have stints for hear problems and still continues and I too am upset with them. After seeing up close what I have had to go through with my husband’s cancer they still have the audacity to light up immediately after walking out my front door!

    Hope this info might help you –
    Take Care
    BJS

    #51226
    marions
    Moderator

    Dear Ashley…..
    It is only that surgery that the true extent of the disease is revealed. Diagnostic tools have limitations due to various reasons including, the thickness of the scan plates. We would be guessing as to why the physician had not mentionioned the lesions however; this is a good question to ask him. On this site and often times we have witnessed for residual tumors to respond to different treatments. Or, we have seen for it to “just sit there.” Everyone appears to have different experiences with this cancer.
    http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver
    Is your Mom taking in enough fluids? I am not a physician and only can pass on those things learned either, on this site or, from other sources but, we have seen lack of hydration to cause elevated ammonia levels. Again, this is another question you may want to address with the physician. Your Mom’s inability to quit smoking may be related to the fact that it makes her feel good. We know the dangers of smoking especially following major surgery but, for the addicted person the harm caused may come secondary to wanting to experience some relieve from the pain and discomfort. Go figure!
    Ashley, there are some things we simply can’t control. We can only do those things within our power. And, we need to understand our limitations. You are doing everything possible to work with a very difficult situation. Take a deep breath and allow yourself a bit of distance from it all.
    I am hoping for others also to chime in. The wisdom of all on this site truly has become one of the greatest resources available to us.
    Additionally I would like to attach another link provided by the National Cancer Institute:
    http://www.cancer.gov/cancertopics/coping/caring-for-the-caregiver
    All my best wishes,
    Marion

    #51225
    marions
    Moderator

    Ashley……you bring up many issues caregivers encounter when tending to a loved one. The enclosed link helped me while caring for my husband. It may do the same for you.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3473

    All my best wishes,
    Marion

    #51224
    rosehi
    Member

    I am new to this forum and my experience with this disease is very limited since when my dad was diagnosed, our only option was to arrange in-home hospice care and so that is what I can speak about. Since that was originally recommended for your mom, would her doctor do so now?

    In our case (I live in Hawaii), with the particular hospice we chose (there are four different hospices here), a nurse case manager comes once a week and a social worker comes once a month. Equipment for the home is also delivered if needed (a bedside commode might be helpful for your mom). Trained volunteers can also come once a week (run errands, etc.) and there is spiritual guidance if desired. Nurse’s aides will also come to the home several times a week to help with care if the nurse case manager authorizes it and respite care (five days per month) at a stand-alone hospice home is also an option.

    The hospice people were terrific and they were there for my brother and sister-in-law when things got overwhelming (there’s 24-hour availability by telephone and a hospice nurse will come out to your home in the wee hours of the morning if need be!) So, if that is an option for your mom, please ask her to consider it.

    I knew my brother would not be happy about strangers coming in to his home to help with dad’s care but they were all professional and tactful and I am sure that he has no regrets about the experience.

    I do want to add that when my father-in-law was diagnosed with jaw cancer, it was not a surprise. He was in his mid-50’s, had smoked since he was 12 years old and was also a pretty heavy drinker. Even after going through a disfiguring operation to try to remove the cancerous tissue, he began smoking again. The only reason he finally stopped smoking was my mother-in-law’s brother talked to him and told him that this was really upsetting his sister. So perhaps if your mom has brothers or sisters or a close friend her age who can talk to her about this?

    I hope this helps – take care of yourself and your family – encourage your mom to reach out for some help –

    #51223
    lainy
    Participant

    Dear ASH, first of all I want to say how sorry I am for all that your whole family has gone through because after all, it does affect the whole family. I am at a loss for words about your Mom’s smoking. Guess if it was me I would have a little talk with her. I also think that maybe its time to go every other weekend.
    Is there anyone else where Mom lives that can peek in on her or give a little visit. Honestly, you need and deserve some time for yourself or you will not be in shape for anyone. We all have our breaking points and quite possibly you have reached yours therefore the time to yourself will get you ready for later if needed more by Mom. I just had an idea. Summertime, school’s out, perhaps you can get a College girl or a High School Senior looking for some pin money to come help out at Mom’s. Best of luck, take care of yourself!

    #5347
    ashleyc
    Participant

    I have posted on here several times about my momma and her battle with CC. It will be a year on August 3rd since she was diagnosed. Everyone on this website has helped so much with insight and personal expieriences that I think many of you know way more than any of her doctors. I have a couple of more questions that we cant seem to get any answers to. Here is where we stand. On April 14, 2011 mom was admitted to the hopital for pneumonia. 2 weeks later she had a 70% liver resection. Right after surgery we were told by the surgeon that he removed all the tumors (1 softball size, and 2 golf ball size) as well as 3 lymph nodes. He didn’t see any other cancer but we wouldn’t know for sure until the pathology reports came back. However, we found out 3 weeks after the surgery from the surgery that he “failed to mention” that he had to leave 2 small tumors on the remaining bile duct. He couldn’t remove them without damaging the bile duct. Now we are told that her most recent scan..almost a week ago shows NO CANCER!!!! What in the world? How can there be no cancer when the surgeon said he left 2 tumors behind? Mom went home after spending 2 months in the hospital (it was a horrible experience to say the least) and after developing the VRE infection. She went home with a pic line to administer antibiotics, 2 drainage bags (one is the stomach and one outside the abdomen) and a feeding tube. She weighs around 100 lbs but looks like a bag of bones. Since the surgery her ammonia levels keeping surging. She was home a week and a half and ended back up in the hospital due to her ammonia and bilirubin levels and she was dehydrated. She couldn’t keep anything down without having the urge to throw it all back up. They have been giving her lactulose for over 4 months to help with the ammonia levels but then she is constantly running to the bathroom and even wearing depends now since she can’t get there fast enough. To make matters worse, she has been a smoker for 30 years. She kept saying that she was going to quit and she was excited that she was able to have the surgery..its like getting a second chance since we were originally told to go home with hospice. However, the first day that she got home, she started smoking again. Talk about devastated and beyond mad. My mother is my best friend..and I can’t be mad at her because she has been fighting so hard for her life, but yet she doesn’t see smoking as a bad thing. I am hurt because for the entire year, I have spent EVERY weekend driving 2 hours to my parents missing my husbands football games (hes a coach) and taking countless hours away from my 19 month old daughter to be with my mom. I have taken off work for weeks and a time and had paychecks cut because I am out of sick/vaction time. Im not asking for any kind of thank you or pat on the back because I know that she would do the same for us in a heratbeat. And then shes goes home to smoke, I feel cheated, mad, sad, and all of the above. I have no idea how to balance my emotions. If I dont go on the weekends, I feel guilty because that is time I need to spend with her in case she’s not here for much longer, but I also feel like I need to spend time with husband and daughter. What could be causing her ammonia levels to soar like they are. We were there this past weekend and she has no memory of even coming home from the hospital. She almost has no memory of the entire year. When you look at her, she’s just in a daze..its like she’s empty. Any advice, thoughts or similar experiences would be greatly appreciated. It is so wonderful having “another family” to talk to. I hope you all have a wonderful weekend.

    Ash

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