Discussion Board Forums General Discussion New Diagnosis, lost, confused, scared…….

Viewing 7 posts - 16 through 22 (of 22 total)
  • Author
    Posts
  • #77779
    pcl1029
    Member

    Hi, Deborah,

    the link below may help.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10757

    Age 68 is young if no other co-exist disease involved at the same time.
    If I were you, if you have not done that, please get a 2nd opinion from Dr. Selby is at USC (Los Angeles) for surgical consult.

    God bless.

    #77778
    snowbird
    Member

    Deborah, my husband was the same way when they first diagnosed him only 4 months ago. He went from no symptoms and healthy one day to unbearable pain and lethargy the next. I just couldn’t believe how fast everything started happening. He could hardly eat anything without vomiting. Over the next 4 weeks, before his first chemo treatment, he lost 15 lbs and was sick all the time. He was NOT looking forward to chemo and all the horror stories he had heard about it. The day he had his first treatment he was just like his old self again! He was SO happy that he felt good and could eat again. I know that everyone reacts differently to the chemo, but don’t be surprised if it makes Don feel better right away too. Godspeed!

    #77777
    kris00j
    Participant

    Deborah, I, too, am sorry you had to find us. Unfortunately, the diagnosis of cc is almost always sudden and unexpected. And it’s so hard to grasp, and wrap your head around things.
    I have been living with an unresectable (although fairly small) liver mass for almost 3 years since diagnosis, so nothing is impossible.
    I drank ensure when my appetite was down. It’s another alternative, high in calories and nutrients.
    I hope you get some good advice for a treatment option and pain management soon.

    #77776
    darla
    Participant

    Hi Deborah,

    Can’t add much to what Lainy and Randi have already said, but want to welcome you to the site and let you know that we are all here for you. I agree that more opinions can’t hurt and will be helpful in giving you more information on what you are dealing with. We all understand what you are going through and we care. Thinking of you and Don and hoping for the best.

    Love & Hugs,
    Darla

    #77775
    Randi
    Participant

    Hello Deborah and welcome to the site, although I am so sorry that you had a reason to find us. I concur with Lainy, that a second or third opinion is in order. Can you tell us more about where Don is being treated?

    We are here for you and I am sure that others will come along and chime in. Eating is a problem with this disease, so I also agree with Lainy about small meals. There was a point at which I just couldn’t eat, from both the disease and my depression. Sometimes I would just cry if too much food was put in front of me. So, my advice would be little meals of things Don loves.

    Take care and my thoughts are with you.
    -Randi-

    #77774
    lainy
    Participant

    Deborah, welcome to our wonderful family but so sorry you had to join us. May I ask where Don is being treated and most of all over anything else have you been to someone for a 2nd or 3rd opinion. What is the reason they give for no surgery? Before I accept Palliative care I would definitely get another opinion. Or during palliative care.
    If he does not feel like eating have him graze all day instead of bigger meals as they take one look at a full plate of food and it looks so huge to them they rather not even try to tackle it. I made Teddy comfort food. Buttered noodles, chicken, jello, mac and cheese, eggs any which way like a cheese omelet. When Teddy was in Home Hospice they suggested Carnation instant Breakfast as he did not like the others. I would blend it with skim milk and a banana. He loved that and could have it in place of a meal as it has all the nutrients you need. For fatigue he got B12 injections once a month. He should not have pain, bottom line is comfort. Be sure the ONC knows and he may to try another pain pill. We are here for you, you are NOT alone. I am sure others will be along to help….that’s what our family does and you have come to the right place. Any questions pop up don’t hold back. Please keep us in your loop, we care.

    #9219
    dcsailsungmail-com
    Participant

    Hello, we are new to this site as of today. My husband Don, 68, has recently been diagnosed with intrahepatic CC after many weeks involved with various pathologists as they couldn’t decide if it was panc/HCC or what as it was “poorly differentiated”. Now they have decided CC and he has extensive lymph node metastasis, although they are biopsying one of the lymph nodes to be sure.

    He was healthy and fine other than some weight loss over the last 2 years but we attributed that to his fairly strict vegan/no fats diet. Now he has abdominal pain and fevers, hardly eats and seems to be going before my eyes. He is on Oxycontin and Medical Marijuana with high CBD content, but nothing seems to help his fatigue and malaise, although his pain control is much better. From my reading and according to the doctors a resection of his liver mass is most likely not an option and palliative chemo is the next step.

    This is so sudden and hitting so hard that we all feel like we are treading water with our heads barely above. I would welcome any suggestions as to how to help him keep his energy up, increase his caloric intake, and coping suggestions.

    Thank you and we are open to anything… Deborah

Viewing 7 posts - 16 through 22 (of 22 total)
  • You must be logged in to reply to this topic.