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  • #60456
    marions
    Moderator

    Ike…thank you for checking in with us. Know that I can’t think of anyone else on this site undergoing surgery for a benign stricture in the bile duct therefore, your information is of great help to others.
    Hugs,
    Marion

    #60455
    isaac-1
    Member

    I lost my father to cancer just over a year ago (he passed away 13 months after being diagnosed with esphogeal cancer, in that time he went through several rounds of radiation and chemo, the raditaion was successful in getting the primary cancer, but the secondaries popped up on the checkup 6 months later) Then 3 months after he passed away I had my own bile duct stricture, suspected CC orcdeal resulting in surgery in August to remove what turned out to be a benign tumor. These two back to back experiences have certainly changed my outlook and personal thoughts on what I would do if I am ever faced with a cancer treatment course in the future. My conclusion is if it is caught early, hit it hard and agressively, if that does not work and the odds are long, then try to participate in some type of clinical trial, that way even if it fails what is learned may help others in the future.

    Ike

    #60454
    kris00j
    Member

    My tumor started around 5x8cm and after 4 rounds of Gem/Ox it was somewhere around 3.5x6cm. So yes, hopefully your sister’s tumor is shrinking. It worked very well for me. I just wish I could have tolerated it better. We had to stop the oxaliplatin after 4 rounds. But it worked better than I had hoped.
    I pray that is the case for your sister. Keep positive thoughts because positive thinking works.

    #60453
    jmgrisolia
    Member

    Thanks to all of you who are supporting me. In general I would say that, after a critical point my sister is showing objective improvements:
    – Good appetite
    – More energetic: she wants to walk to the church or scroll slowly to the cafeteria across the street, she is not 90% of the time lying down but sitting on the sofa, she also is very talkative…
    – The skin is not that yellow as it was.
    – Swallowing has drop notably, I am tempted to say dramatically

    Nevertheless, a bad sign is the cachexia. Her weight went down in four weeks by two kilos BUT we have to consider the reduction in her swallowed abdomen.

    Other aspects such as anguish, etc are more under control, partly because following doctor prescription she is taking alprazolam.

    Do you think that this might mean that chemo is working somehow? I am not saying here that she is being healed but perhaps her tumor might be shrinking a little bit.

    #60452
    kris00j
    Member

    Jose:
    Have you checked other hospitals you could get to? I travel 3-4 hours each way to see some of the best doctors in NY. I live near “good” hospitals but I wasn’t comfortable there.
    If you have a top hospital you can get to, bring copies of all her tests and get another opinion. Quickly!
    If they still say she has no hope but she can try a clinical trial, I say try it.
    I am currently inoperable too. I had a small window where my surgeon wanted to resect me, and of course I got sick. So I missed it. WHEN I finally am operable (hopefully soon) I will be donating the tumor cells to research. If I didn’t have this hope of a resection soon, I would have checked into some more trials using the theraspheres and other non-radiation trials. The tumor is too close to my heart for radiation. But I am all for trials if nothing else is working. Why not?
    Hope from trials: I have a good friend who is participating in a clinical trial for a very aggressive form of breast cancer. Hers was back within 3 months of her surgery and radiation. So she is participating in the trial. She figured she had nothing to lose. Traditional therapies didn’t work for her. And it’s working!! She had a perfect CT scan last week! The cells that concerned the oncologist are back to normal.

    And finally, as a current cc patient, age 48, I need to know what’s going on. I am my own advocate so I HAVE to know. I am also stage IV. I have a hopeful outlook but know how serious everything is. My family all knows what I want if I pass away. Most of my close friends do, too. Many of my friends have my parent’s number to call them if anything happens. Athough they live over 900 miles away, so they can’t be here quickly, they also need to know. I have no husband or children so my parents are my next of kin. And I want to know what the prognosis is so I can make plans. Before my surgery, I want to sort out many of my items and list them so my family knows who I want to leave what to. I have lots of semi-precious jewelry and would like all my female family members to get some. Things like that.

    I hope you can find something to help your sister. They are coming out with so much lately, I believe we are all on our way to more hope.

    #60451
    pcl1029
    Member

    Hi,
    In the States here, patient consent is very important; however cultural difference may play another role in other parts of the world. But in general,it is better for the patient to know what is exactly going on for him or her. After all it is her body and her life. I think it is too big a burden for anyone to bear such a burden for another person.
    Decreasing in swelling is good. Eating is good ; eat more fruits and vegetable,protein such as poultry ,beans and nuts.
    Concentrate on the current treatment plan research and less on trying to find other unproven or unconventional treatment suggestions over the Internet ; try to spend quality time with your sister to creat lifetime memories for both of you. And please forgive me if I say something not agreeable with your thoughts.
    To get a second opinion on radiation treatment such as radioembolization or RFA is a logical choice if there are no mets to other parts of the body.
    Usually in the States, if the treatment works,as it seems on your other posts indicated,continue the same regimen until disease progress or intolerantable side effects occur is usually what the oncologist does.
    If patient agrees,palliative treatment should be consider if “quality of life” vs “quantity of life” indicates the former.
    Iam a patient of ICCA for 35 months,and I am also part of the caregiver team for my sister-in-law who just passed away last month for the same disease.
    Good luck and
    God bless.

    #60450
    jmgrisolia
    Member

    Thanks a lot to both. We still want to keep hope…this Friday there is a checking at the hospital so we will know what options we have.

    Hughs
    Jose

    #60449
    betsy
    Member

    Speaking as a current patient, (age 52) I would want to know how serious the situation is and that the options are limited. I have been sick for the last 3-1/2 years and while I hope for the best, I have been seriously ill 2 times already and I am aware that a health crisis can come on me at any time and I could die. So, armed with this knowledge, I have the choice to make what’s left of my time living my life the way I want, without regret. My family knows my wishes after I die and I’ve talked very openly about this with closest friends. This is a great comfort to me. I have been able to open my heart more and I am full of love, given and received by so many.

    There are social workers on staff at hospitals and they would probably have suggestions on how to have this discussion with your sister. I do appreciate the situation you are in and I know it must be incredibly difficult and sad. I hope my own experiences are helpful.

    hugs,
    Betsy

    #60448
    lainy
    Member

    I am so sorry to hear this about your Sister. I am one of those that believes everyone has a right to know so that they can make plans and do what ever they need to do to get their “house in order”. However, since she has not been told not sure that would work. I would suggest asking the Doctor if he feels it’s time to get ready for Hospice. The bottom line is her comfort and they will see to it that she stays comfortable. My vote is for A. I wish you the best, I know this is such a difficult time for all of you.

    #6737
    jmgrisolia
    Member

    Dear friends,
    I wanted to share with you the crucial decisions we have to take regarding my sister’s situation. Firstly let me remind you the background for those of you who don’t know: she is 49, Intra-CC stage IV. Doctors consider her tumor non-resectable. They offer us four options
    a) Do-nothing and just control de pain, etc
    b) Continue with the standard treatment of gemox
    c) Add Cetuximab
    d) Going through a clinical essay with unknown chemicals.

    We don’t want to lose our hope. We have to try everything but, on the other hand, she is exhausted after five cycles of Gemox. She does not know her real situation, that, in fact, doctors consider her a hopeless case and we think it’s better for her to remain in this situation to activate the placebo effect. On the other hand this is being too hard for her. She can’t cope with this. She is suffering too much and we think she would not stand the truth.

    I will welcome any comments or advice considering this situation.
    Thank you very much
    Hugs

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