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Viewing 15 posts - 301 through 315 (of 324 total)
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  • in reply to: Klatskin Tumor #87073
    debnorcal
    Moderator

    Awesome news!! Best wishes for a speedy recovery.

    debbie

    in reply to: Hello from England #87533
    debnorcal
    Moderator

    Judith,

    I live in the US, so I am not familiar with UK systems. I’m sure some of our European members can advise on medical systems and patient/caregiver rights in the UK though. I “hear” the desperation in your words and would like to offer a bit of general advice. First, please know that no matter what, you will not be alone. This discussion board is full of compassionate and knowledgeable people, and we will be there for you and Mary as long as you need/want support. I found it extremely helpful to correspond with others that have walked in my shoes (and my husband’s). This disease often hits so fast and hard that it can be completely overwhelming. My best advice right now is to try to stay calm and focus on needs that are immediately in front of you. Perhaps most important is to understand exactly what Mary’s diagnosis is and what treatment options are appropriate currently. Also, best provider for them. Dr. Valle should be able to explain this to both of you. If you don’t understand something, ask the doctor to clarify. You are entitled to this information. Once you know the complete medical situation and treatment options, then the two of you (you and Mary) can discuss how she wants to proceed, Same with social worker. I suggest you ask for specific concerns they have about Mary returning home and then perhaps you can take steps to overcome those concerns (for example, if she is too weak to manage stairs and the home has many steps, maybe she could occupy an area on the first floor.) Whatever they say, I would try to really understand the issue and work with them to find the best solution for Mary. I hope I don’t sound too “preachy”. I just wanted to share what worked for me – addressing the most pressing issue each day and trying not to think beyond the next day or so. I hope that you and Mary get the information and support you need and deserve. Debbie

    in reply to: Look for treatment options #87690
    debnorcal
    Moderator

    Welcome to our forum, Dai. I am sorry to read that your dad has CC and had an aborted attempt at resection with complications. My best advice to you, based on our personal experience with UCSF, is to request a consultation with Dr. R. Kate Kelley, Medical Oncologist, at UCSF. Her telephone # is 415 – 353-9888. I would suggest providing her with the pertinent details of your dad’s situation and ask her how best to proceed with treatment.

    Dr. Kelley is brilliant, kind and knows how to get to the heart of issues and get treatment in place. She also works with a world class team of multidisciplinary doctors that work closely together to best address the needs of patients. They see quite a few CC patients. We live in the east bay area, and do not regret for a moment the hour and a half drive we made many times for my husband’s consultations and treatment. We were told my husband’s CC was not resectable after a failed resection attempt by a big HMO in our area. We went to Dr. Kelley seeking her opinion on the best treatment for him based on her involvement in current research and trials. In my husband’s case, the entire UCSF team met and determined surgery was possible. If not that, next best would have been a combination of Gem/Cis followed by SBRT, with more options behind that. My point is that you are within driving distance of a world class CC specialist and there are options that can be effective, so I hope you take this advice or go to a similar top center specializing is CC. The other medical centers simply don’t have the expertise to handle these cases well. All the best you you and your dad.
    debbie

    in reply to: 9 months – all clear #87650
    debnorcal
    Moderator

    Awesome! Good for you, Dennis.

    Thanks for posting. It is so encouraging for many on this board to hear of the successes!

    debbie

    in reply to: How to stop leaking bile #87658
    debnorcal
    Moderator

    I would run it by her doctor. It sounds as though the bile may be pooling rather than being directed into the drain tube. The IR doctor may need to do a “tube check” to see if the tube needs to be repositioned or replaced. (I know, a pain and I may be incorrect, but the doctor should be able to advise if this needs attention or not.) I’m assuming no fever or chills, which would be sign of infection and require immediate attention.

    Best,

    debbie

    in reply to: Update on husband in ICCA #87459
    debnorcal
    Moderator

    Hi Liz,

    In January, 2015, my husband had an extended right hepactomy with portal vein and bile duct resections (hilar CC). This is a more extensive surgery than is proposed for your husband but perhaps our experience can be helpful to you in getting an idea of what to expect. We were told that the first step in the OR is to open up and explore stomach and other areas to be sure cc hadn’t spread. (If it had, they would have stopped and closed him back up.) Assuming they proceeded the doctor expected total time in OR to range from 8 to 18 hours. In my husband’s case, it took exactly 10 hours – 3 to explore then 7 to perform the surgical procedures. The doctor utilized a “no – touch” technique, which essentially involves taking a slice of bile duct tissue where they think they have all the cancer and freezing it and running it to the lab for visual inspection. They do this repeatedly until they get clear margins and this takes quite a while, so contributes to the total overall procedure time. I would expect that your husband’s surgery would take considerably less time because it sounds like they are removing less of the liver and have no portal vein reconstruction involved.

    After surgery, he was in ICU for one week and then a regular room for two more weeks before release. His complications included an embolism (blood clot) in the portal vein, a small bile duct leak and C-Diff (nasty bacterial infection). We are 80 days post-op and he is recovering well. Still weak but getting stronger every day. Planning to return to work soon. For us, the operation was absolutely worth the risk and the complications.

    I agree with Judy’s comment that your doctor can give the best idea of expected timing. I love hearing about all the resections that are being scheduled lately. It seems like we’re making some progress toward managing and hopefully curing this awful disease! Wish you and your husband the best possible outcome.

    debbie

    in reply to: Should I take semester off for mother’s prognosis? #87396
    debnorcal
    Moderator

    Lola, I’m so sorry that your mom’s cc has returned. That’s the news we all don’t want to hear. Has your mom decided whether or not to accept the chemo? That choice might be helpful to you in deciding whether or not to take time off from your education. For instance, if she is going to have the chemo, I would think putting your program off for a year or more would make it difficult for you to finish the program. Perhaps if she has chemo, you could find a way to rotate caring for your mom with your other family members, so you could take some long weekends and schedule your “shifts” in accordance with school holidays etc. If, on the other hand, she elects no chemo, taking the summer off to be with your mom might be very good for you and her. This is a difficult journey and I don’t think there are any right or wrong answers. I wish you peace.
    debbie

    in reply to: My Introduction #80320
    debnorcal
    Moderator

    Hi Matt, Just want to let you know that I’m sending wishes for continued healing to you. I’ve been following your journey as you post and am praying for continued good news for you. My husband has traveled a similar journey, about a year after you. He had a successful extended resection at UCSF on January 12, 2015 and is recovering well. Your attitude is similar to his as well – stay calm and positive, face each issue as it arises and keep your eye on the prize. Through your example, you and he are both showing your families how to deal with adversity -an incredible gift for spouses and kids.

    You have a beautiful and supportive family. Stay strong.

    debbie

    in reply to: Successful extended resection! #86717
    debnorcal
    Moderator

    Lainy, Julie T., Gavin, Melinda and Porter thank you all for your good wishes!

    debbie

    in reply to: My husband has CCA #86611
    debnorcal
    Moderator

    Welcome, Amy.

    My husband also has CC and is about a year behind Matt. He just had his resection on 1/12/15. I have been following Matt’s journey and sending him prayers and positive thoughts. I am sorry that Matt has taken a downward trajectory at this time. Stay strong. There are many excellent doctors and better treatment options surfacing all the time. Best wishes to you and Matt as you search for the best options. Please know many are thinking of you.
    Debbie

    in reply to: 22 year old son just diagnosed #86398
    debnorcal
    Moderator

    Hello Wensdi and welcome to our group. First of all, oh my gosh, this must be so overwhelming for you. Even though CC is a rare disorder, it comes as an even greater shock when the patient is so young. The members of this board are exceptionally caring and knowledgeable. This, in my opinion, truly is the most informative source you can look to for information and guidance. I know it was for me when my husband was diagnosed nearly a year ago.

    It would be helpful if you could provide some information about your son’s diagnosis. Where is the CC located, what were his presenting symptoms, how was it diagnosed and by whom?

    I’m sure you will receive some very helpful information from our members about how to proceed, nearest medical centers with expertise in CC, and ideas for seeking treatment when medical insurance is not available. The doctors that do not specialize in treating CC tend to use a palliative, “just deal with it” approach and may not even be aware that there are more and more effective treatments surfacing all the time. It is really important to seek a knowledgeable doctor that treats many cases of CC. All my best to you and your son.

    Debbie

    (Note: This is also posted in the General Discussion thread)

    in reply to: 22 year old son,just diagnosed!?!? #86406
    debnorcal
    Moderator

    Hello Wensdi and welcome to our group. First of all, oh my gosh, this must be so overwhelming for you. Even though CC is a rare disorder, it comes as an even greater shock when the patient is so young. The members of this board are exceptionally caring and knowledgeable. This, in my opinion, truly is the most informative source you can look to for information and guidance. I know it was for me when my husband was diagnosed nearly a year ago.

    It would be helpful if you could provide some information about your son’s diagnosis. Where is the CC located, what were his presenting symptoms, how was it diagnosed and by whom?

    I’m sure you will receive some very helpful information from our members about how to proceed, nearest medical centers with expertise in CC, and ideas for seeking treatment when medical insurance is not available. The doctors that do not specialize in treating CC tend to use a palliative, “just deal with it” approach and may not even be aware that there are more and more effective treatments surfacing all the time. It is really important to seek a knowledgeable doctor that treats many cases of CC. All my best to you and your son.

    Debbie

    in reply to: My dad’s fight came to an end #86152
    debnorcal
    Moderator

    Carrie,

    I am also so sorry that your dad had such a rough journey with cc. Like you, I read often and post very infrequently. I am glad you were able to find helpful information and advice on this discussion board. I hope you will continue to visit for emotional support. As you know, this is a wonderful group of folks.

    I wish you and your family peace.

    Debbie

    debnorcal
    Moderator

    My husband started experiencing similar discomfort about 6 months after his exploratory surgery. A CT scan was clear. His doctor attributes it to nerve endings that were cut and remain sensitive.

    Hope this is helpful.

    Debbie

    in reply to: Reduction in Oxalaplatin without exam #83636
    debnorcal
    Moderator

    John, I am so very sorry for your loss. Wishing you peace and comfort.

    Debbie

Viewing 15 posts - 301 through 315 (of 324 total)