Discussion Board Forums Introductions! Through my husband, i join this very scary world of cholangiocarcinom

Viewing 15 posts - 1 through 15 (of 30 total)
  • Author
    Posts
  • #61436

    Pam, I will look into the search engines. My husband and I visited New Bern last fall. I have a cousin who slips a 41 foot Lagoon Cat there. Nice place.

    #61435

    To: For my dad,
    Everyone is in such a different place I assume. We too went to U of M and because it is stage four with tumors in liver and lots of spots on lung, they did not have options for us. I would like to think that we are doing what we we can and not missing something. We have stopped chemo due to growth of more tumors on his liver. At a loss!

    To: Margaret
    Thank you for your kind words. We are living the moment. Planning a sailing trip to Chicago in two weeks if he has the energy to do so. We are staying in a lighthouse this weekend for our 25th wedding anniversary, compliments of my board of directors where I work!

    Still a nightmare!

    #61434
    formydad
    Member

    Susan,

    I am sorry we had to meet here but you will find support. I’m not sure if you had gotten a second opinion but my father who was diagnosed with CC in May, started at Beaumont in MI and he is now at the U of M. He has started a clinical trial and both he and my mom are very happy there. If you google U of M clinical trials for bile duct cancer you will find information. I will be happy to help you in any way I can. Stay strong, and take minute by minute!

    #61433
    mlepp0416
    Participant

    Susan:

    A bit late in chiming in, but better late than never. My husband was 61 when he was diagnosed. He was able to have a resection and they got all the cancer. 18 months later he turned yellow, went onto radiation, then chemo. Sadly he lost the battle on 11/20/11. It will be 7 months tomorrow that he left this earth.

    My advice would be to live in the moment, build those memories and get lots of pictures – spend time with family.

    My heart goes out to you.

    Prayers coming your way.
    Margaret

    #61432
    cherbourg
    Participant

    Hi Susan,

    So sorry you had to join us but we are all here to help. I diagnosed my mom with Stage IV CC with numerous mets to the lungs, (I’m a Cytologist) so I know how hard this monster can be. She was 76, still working full time by choice, walking 6 miles a day and involved in Church and a zillion other things. She was diagnosed in May of 2008 and died in April 2009.

    CC is indeed a roller coaster ride. You do seem to be doing all the right things!

    I don’t know if anyone has mentioned it but there is a search engine on the site. You can query anything that comes to mind and just type it in and it will pull up comments.

    We also have Dr. Giles here as well.

    Don’t ever hesitate to vent, rant or sound off! We have broad shoulders and we all understand what you’re dealing with!

    I’m sending hugs and tons of prayers for you and your family!

    Pam

    #61431
    lainy
    Participant

    Dear Susan, I am sorry to hear about your latest news but I admire your attitudes. That is what we did as life is for the living and making good memories to last forever. Hospice is a great plan and they will support you both all the way on this journey. Tired goes with the territory and sadly, CC is still unchartered waters. So happy that the Party was so successful. That was a wonderful idea. Enjoy the boat, live life to the fullest that he can, love more everyday and you will never regret it. We used to call it our “honeymoon”. Best wishes to you both and please keep us posted.

    #61430

    Wilma, how is it going for you and your husband? We have stopped chem -more tumors appeared on his liver. Met with Hospice yesterday. He is doing ok in fact on our sailboat haing breakfast. He is tired a lot however. His Celebration of Life Party that we had for him was wonderful. Aver 140 people came out to support him. It was not a benefit just a party! Wonderful friends and he felt really loved. Like you said what a roller coaster!

    #61429
    wzhalb
    Participant

    Susan,
    I hear and understand your pain. My husband was just diagnosed Mar 24 2012 with few symptoms leading up to the diagnosis. Knocks the breath out of you. This has been a roller coaster ride. The one thing I consistently hear is this disease varies from person to person. All I can say is love him, get all the information you can, use what helps you, and throw all the rest out the window. You have to have a good strong medical team committed to you. We have that and it means alot. You fight all the battles with meds that work, meds that don’t, procedures maybe or yes or no, insurance issues with auth for this or no it is too soon for refills on nausea meds, etc, etc, etc. I have been so vocal on this site with lots of anger!! It is ok, this is a safe place to be. What I have been able to come to terms with is the fact that this disease varies from one person to the next and some of us go through the same stuff, but many of us don’t. That was hard for me especially seeing positive posts about do this or try this it woks. Like I said, read it all, use what you can, and don’t give up hope. I am praying for you and your family. We are stronger than we think.
    Prayers and kind thoughts coming your way,
    Wilma

    #61428
    tiff1496
    Member
    Susancloutier wrote:
    Oh Tiffany stage four also with young children. You are a few months a head of us. Is the father in the picture. I can’t imaging how down my husband is to also be a primary care giver to young children! I only hope you have a good support system there!

    Yes he is! He is an amazing man, and I proud to call him my husband:)
    It is hard on him. I was doing gall the cooking, cleaning, and taking care of the kids while he worked full time.
    Now he works full time still, and picks up my slack. Plus I have an amazing family to follow me every step of the way. I’m doing good I must say!
    Tell your husband to hang in there!!

    #61427
    mustangmort
    Participant

    Nothing like this kind of news to “take your breath away” in the bad sort of way. The bad way is to land on your tailbone and get the wind knocked out of you or the proverbial “getting hit in the stomach with a baseball bat (cricket bat, for those in the UK). My heart strings are pulling tight for you and your husband.

    Susan, find out all you can and never “settle”. The fight has begun, so give it all you’ve got.

    God bless you both and hang in there.

    #61426

    Thank you all, it is amazing the number of people on this site! In regard to a second option yes we went to U of M and what they said is because it is stage 4 and the tumor on his liver and spots all over his lung he will get the same treatment in Muskegon Michigan or Mayo, or John Hopkins, or…….so.

    Pam, I am so sorry to hear about your family at such a young age! I can’t imagine with young children!

    #61425
    karenb
    Member

    Hi Susan,

    I am so sorry to hear about your husband. I read on here almost every day, but do not post much… however, I did want to mention that my sister had an obstruction and that is actually what caused her to lose her battle, because by the time they found out she had it, she wasn’t strong enough to go through the surgery… so if your husband does have an obstruction and is strong enough, maybe this is something you want to look into or mention to his doctors and/or surgeons…

    Good luck!

    Karen B

    #61424
    karenb
    Member

    Hi Susan,

    I am so sorry to hear about your husband. I read on here almost every day, but do not post much… however, I did want to mention that my sister had an obstruction and that is actually what caused her to lose her battle, because by the time they found out she had it, she wasn’t strong enough to go through the surgery… so if your husband does have an obstruction and is strong enough, maybe this is something you want to look into or mention to his doctors and/or surgeons…

    Good luck!

    Karen B

    #61423
    pamela
    Participant

    Susan,

    Hi and welcome to this site. My daughter, Lauren , age 26 is the one with CC. I wanted to know where your husband sees his oncologist. We live in Ohio and travel 3 1/2 hours to University of Michigan Hospital. It is a major Cancer Center and I didn’t know if you knew about it or if you went there. I didn’t see anything in your posts. I would be more than happy to tell you about it if you are interested. The doctors and nurses are awesome and they have been able to help Lauren a lot. I wish you and Peter a miracle and many more happy times together.

    Love, -Pam

    #61422
    jessica
    Member

    Hi Susan, sorry to hear about your husband, as you can see CC hits different people in different ways. My husband was diagnosed in January, he just turned 28 years old in March. We have two children ages 2 & almost 4. We have seen a few different doctors, we are in easturn Canada where not many doctors know much about CC so we opted to travel to Milwaukee to see a wonderful doctor that is from here. Unfortunatly because we were put on hold for a couple months here with doctors trying to figure out what to do, the cancer has now spread through his abdomen. We are doing chemo and he seems to be feeling better. he, like your husband, seemed to retain water and his pants were getting tight…… I don’t think the chemo is helping this but other problems that he had, like a sore shoulder, sore back and “upset stomach” feeling have almost gone. He goes for chemo every other week and for a whole week after chemo he feels aweful, but we live for those good weeks where we do as much family stuff as possible. This is our good week and he is taking our kids camping on a “no moms allowed” camping trip with a bunch of dads and kids from our church. This also gives me a chance to go for a spa weekend with my girlfriends….. all of this CC stuff can really mess with a person’s head and a little break from “cancer life” is much needed! My husband is battling a bit of depression at the moment too, the more people treat him like he is dieing the more he gets depressed, so live life to the fullest, but not like it’s your last day either! I hope you are pleasently surprised with a lot longer than doctors have given you! Good luck and have a great weekend :)

Viewing 15 posts - 1 through 15 (of 30 total)
  • You must be logged in to reply to this topic.