Discussion Board Forums Introductions! New Here: CC – IV

Viewing 14 posts - 1 through 14 (of 14 total)
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  • #93588
    middlesister1
    Moderator

    Dear Wyatt,

    I am so sorry to hear of your loss- although it’s hard, try not to second guess yourself. You did everything you could- we have to be advocates, but we also have to depend on the doctors. Also, this is a horrible disease that does not discriminate between rich and poor. I think that this organization exists because there are some who did have the funds, but still lost loved ones and now they are being compassionate and trying to help other patients and families. We’re going through hospice now with my father (lung cancer), because although we have our success with Mom’s battle and CC, we knew with Dad we needed to focus on quality of life and making him comfortable,

    My heart goes out to you.

    Catherine

    #93587
    rwpavocat
    Member

    Wyatt,
    Very sorry to hear you lost your dad so soon. There never seems to be enough time. Allow yourself the time to grieve this significant loss. The love you shared will always be with you.

    Shelley

    #93586
    debnorcal
    Moderator

    Dear Wyatt,

    I am so sorry that your dad has passed. From your postings, I can tell you are a wonderful son and I’m sure your presence and love made the situation easier for your dad. You and your family are in my thoughts. Please reach out to us here for support as you grieve and head into a new normal. I’m sure you made your dad very proud.

    Debbie

    #93585
    darla
    Participant

    Dear Wyatt,

    I am sorry to hear that your dad has passed away. You & your family have my deepest sympathy.

    Hugs & Love,
    Darla

    #93584
    chinesechick
    Participant

    Dear Wyatt,

    I’m so sorry to hear of your dad’s passing. I lost my mom to this awful disease in November. Please take care of yourself. I try to take comfort in knowing my mom’s no longer in pain and I hope you can do the same about your dad.

    My mom also had her gallbladder removed… back in the 70’s.

    Aloha, Nancy

    #93583
    lainy
    Participant

    Dear Wyatt, I am so very sorry to read about your Dad. Know that he is whole again and at peace.

    I’M STILL HERE
    I’m at your side each night and day,
    In your heart is where I’ll stay.
    You can feel, see or hear, I am not gone, I’m always near.
    I’m the colorful leaves when fall comes round,
    The pure white snow that blankets the ground.
    I’m the first bright blossom you’ll see in Spring.
    The first warm raindrop that April will bring.
    I’m the first ray of light when the sun starts to shine,
    And you’ll see that the face in the moon is mine.
    I’ll whisper your name through the leaves on the trees,
    And you’ll feel my presence in the soft summer breeze.
    I’m the salty tears that flow when you weep,
    And the beautiful dreams that come while you sleep.
    I’m the smile you see on a baby’s face.
    Just look for me, I’m every place!

    #93582
    latenightalumnus
    Participant

    Haven’t posted in a while, but I lost my dad on Sunday, the Fifth. After his second session of chemo, he had swelling which meant that his kidneys were damaged. His blood pressure was low so he could not continue with chemo. At that point, they had wanted to try Gemzar to slow the growth but his blood pressure was still too low.

    He decided hospice was right for him. The swelling eventually went down and we helped him as much as we could be comfortable and loved. We also tried alternative treatments but in the end he lost his battle. I think back now that if he didn’t have the chemo, perhaps we would have stayed with us longer. If we had the funds, we could have sought out different opinion and treatment in the U.K.

    Anyway, keep fighting until the end. I wish you all the best.

    Wyatt

    #93577
    rwpavocat
    Member

    Hi Wyatt, welcome to this wonderful rich site that my husband and i unfortunately were blessed to find this past summer following cc dx. Just wanted to share with you that my husbands first stent was not far enough into the liver to open the bile duct strictures hence his jaundice worsened. Following an MRI they were able to see exactly where the strictures were (intrahepatic-left and right hepatic ducts) and place stents more accurately in these locations…his yellow drained before our eyes and what a relief he had within hours. it might help to get another opinion on jaundice relief. All the best.

    Shelley

    #93576
    iowagirl
    Member

    Dear Latenightalumnus…..welcome to the CC Foundation boards. From a patient perspective, I can tell you that the people here are wonderful . We don’t have all the answers but nobody does. :)

    It is certainly worth getting another opinion from Mayo , especially since they are so close by you. I live in East Central Iowa and drive the three hours up to Mayo quite frequently….or …well, my husband drives me up there. :)

    What you are feeling is very normal. It’s okay to be sad some…..to be angry even. You may go through all sorts of emotions and it can be overwhelming. It’s normal to think about the things that your dad might not be there to experience with you. As a patient, I am doing the same things…..already thinking about what I will miss as well. As a family member/caregiver, it is important to take care of yourself though or you won’t be able to help care for your dad either.

    No, it is terribly frightening to hear that you have 6-12 months to live. I recently got that prognosis (another cancer besdies the CC) and I can tell you it’s devastating for the entire family along with the patient. My family is doing everything right now to create “fun” times and good memories for themselves and for me.

    Julie

    #93578
    lainy
    Participant

    Wyatt, excellent if you can get an appointment for Dad at the Mayo. Best of luck. BTW, I visited St. Paul often as my Mother was from your town!

    #93579
    latenightalumnus
    Participant
    Lainy wrote:
    Dear Wyatt, welcome to the best place to be for CC support and I know you will love our remarkable family. The best suggestion I can make is to get another opinion asap. You want to make sure you are at a very experienced hospital and with a very experienced Oncologist and we are big believers in 2nd and 3rd opinions. Not far from you is Mayo Clinic in Rochester and they are extremely experienced with this rare cancer.
    It sounds like his stents may be infected or clogged as that is what causes the jaundice. My husband had to have his stents changed about every 6 weeks. It could be the jaundice that is making your Dad so ill. We have had patients at Stage IV and chemo brought the tumor down in size, was chemo ruled out?
    I would check with the ONC about chemo and a change of stents. And please check in to another opinion. Below is a sight you may find helpful:

    http://cholangiocarcinoma.org/newly-dx/

    All of your feelings are unfortunately normal under the circumstances and You never know how strong you are until “strong” is the only choice you have! Please keep us updated on how Dad is doing and be very strong.

    Thank you. The doctor did check the stents and they were open. It’s the drainage from the mini-ducts that affecting him. Chemo is his only option. Mi have a sister who does work for the Mayo so I am trying to encourage my family to get a second opinion.

    #93580
    marions
    Moderator

    latenightalumnus…welcome to our group. So sorry you had to join us, but given that we have this disease in common, we are thrilled to have you on this site.
    First and foremost, please remember that your father does not have an expiration date stamped on his foot.
    I have a few questions:
    Obtaining a second opinion from a center treating a high volume of CCA patients has become standard of care. Is this something your Dad would consider doing?
    You are mentioning recurring infections, are most related to blockage of the stent?
    Had the diagnosis been confirmed by biopsy and if so, has the tissue been tested for molecular alterations (faults)?
    Have you perused our “newly diagnosed” thread on the main website? http://cholangiocarcinoma.org/newly-dx/

    Also, dear latenightalumnus, you may also want to take a look at the vietnam vet facebook site.
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13817
    They are a nice group helping vet’s with anything service related.

    Hopefully I did not overwhelm you with my response, certainly it is not my intent to do so, rather I wish for you to be well informed about this cancer so that your father can make educated decisions.

    Again, so happy you found us and I look forward to others chiming in as well.

    Hugs
    Marion

    #93581
    lainy
    Participant

    Dear Wyatt, welcome to the best place to be for CC support and I know you will love our remarkable family. The best suggestion I can make is to get another opinion asap. You want to make sure you are at a very experienced hospital and with a very experienced Oncologist and we are big believers in 2nd and 3rd opinions. Not far from you is Mayo Clinic in Rochester and they are extremely experienced with this rare cancer.
    It sounds like his stents may be infected or clogged as that is what causes the jaundice. My husband had to have his stents changed about every 6 weeks. It could be the jaundice that is making your Dad so ill. We have had patients at Stage IV and chemo brought the tumor down in size, was chemo ruled out?
    I would check with the ONC about chemo and a change of stents. And please check in to another opinion. Below is a sight you may find helpful:

    http://cholangiocarcinoma.org/newly-dx/

    All of your feelings are unfortunately normal under the circumstances and You never know how strong you are until “strong” is the only choice you have! Please keep us updated on how Dad is doing and be very strong.

    #12823
    latenightalumnus
    Participant

    Greetings:

    My name’s Wyatt. My family and I just found out on 10/31 that my father has CC. He just started chemo two weeks ago (University of MN – Fairview) and that’s when the oncologist finally informed us that it was already at Stage IV. Transplant isn’t possible due to it spreading to his lymph nodes and his age (66). The tumor (5 cm) is inoperable because it is located in an area where there are too many vital functions of the liver exist.

    A little background on my father, he had his gallbladder removed about 19-20 years ago but the tumor (about 5cm) is located in the vicinity of where it used to be. We didn’t even know that he had it. He was a former soldier in the Vietnam War. He works as an auto mechanic. There weren’t any signs or symptoms until he felt dizzy one day at work. Ever since the diagnosis, he hasn’t been able to eat very much and the jaundice has finally come after two stents were placed into his liver. The stents work but the mini ducts are slowly draining thus he has very little appetite. We are tracking is food and drink intake.

    It’s heartbreaking to watch him slowly deteriorate. One little fever and we’re back in the hospital. It’s been like this since November. My family and I are staying as strong as we can for him and trying to keep him happy and strong so he can fight this. As frightened as we all are, I know for him it’s tenfold. It’s never a good feeling when someone tells you that you only have 6-12 months to live.

    Often times when I’m not around him though I am hurting and I grieve alone. My father is the rock that holds our family together and he also is the connection to our extended family. Losing him is devastating. There are so many things I’ve yet to do with my dad and also he’s yet to see me go through all of life’s milestones such as marriage, having my own children, and so forth. All I can do now is be there and spend as much time as I can with him and take it day-by-day. It’s hard not to think about what we haven’t done.

    I think it’s good I found this site. I look forward to discussing this topic with you all and also perhaps find some words of encouragement not only for me but my family as well.

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