debnorcal

Forum Replies Created

Viewing 15 posts - 271 through 285 (of 324 total)
  • Author
    Posts
  • in reply to: 5 Years and Still Going! #89794
    debnorcal
    Moderator

    Kathy,

    Congratulations on your big milestone. You are one of the lucky ones! Wishing you many, many more healthy years.

    Debbie

    in reply to: 1st scan since starting #89560
    debnorcal
    Moderator

    Shrinkage is fabulous news!! I’m so glad for you.

    Debbie

    debnorcal
    Moderator

    Duke,

    I haven’t actually communicated with you directly, but I want to let you know that you have helped me so much nonetheless. When my husband was diagnosed in May, 2014 and I found this board and your posts. I have read many of your posts. These posts have provided me with much needed information and inspiration. I am grateful for your incredible generosity in sharing all that you have for the benefit of others during a time of personal challenge. You really do set the standard for how to navigate this disease – with accurate information, humor and dignity. Thank you. I wish you peace.

    Debbie

    in reply to: Introduction and my story #89546
    debnorcal
    Moderator

    Hi Scott, It is a pleasure to meet you despite the circumstances that led you to find us. I discovered this discussion board in the spring of 2014 when my husband was diagnosed, and the information and support has been invaluable. Not only is this the best place to find the most current information about treatment and research, it is also a great source of emotional support. The people on this board are so kind and caring, and they really “get it” when CC patients share their feelings and concerns.

    Your CC “story” sounds similar to my husband’s in terms of presentation, including ERCP and month long hospital stay. Except my husband had disease in his right biliary system and a large mass in his liver. Initially, he was not a candidate for resection and he started chemo (GEM/CIS). We sought second opinions from two medical centers that are all very experienced with CC. They concurred that he was unresectable but encourage him to take the chemo in an attempt to become resectable. We didn’t think that was at all likely, based on all that we had read, but, we started treatment. We kept searching, though, and our third second opinion (UCSF) presented his case to their multidisciplinary team, and shockingly, their highly skilled surgeon advised that he could do a resection with intent to cure. Mike had the extended resection 1/12/15 and, after a long, gradual recovery, he is doing very well. He returned to work in May, and prognosis is good.

    We have learned how important it is for patients with this disease to work with medical centers that are very experienced with CC, as they are having better success for their patients than the generalists. Many patients are having results that exceed expectations. I know that dealing with CC is unbelievably difficult, but I think being positive and taking one day at a time, makes it more manageable. Sending lots of positive thoughts your way,

    Debbie

    in reply to: Can you pray for my family ? #89349
    debnorcal
    Moderator

    Absolutely. Your Mum and your family will be in my prayers. I’m glad your Mum is feeling well. Scans post surgery can be so scary, as they bring all the earlier medical issues to the front of our thoughts again. Try to stay calm and positive.

    Sending loads of positive thoughts your Mum’s way!

    Debbie

    in reply to: Dad can have PIPAC!! #89310
    debnorcal
    Moderator

    Katia,

    Awesome news. Kudos to you for stopping at nothing to find the best treatment for your dad! Your attitude is inspiring. Please keep us posted on your dad’s response to this new treatment.

    Debbie

    in reply to: Survival…Please tell us your latest milestone #64765
    debnorcal
    Moderator

    Thanks, Catherine. I wish the same results for your Mom when she has her followup in August!

    debbie

    in reply to: My husband #88772
    debnorcal
    Moderator

    Dear Arlene,

    I am sorry to hear that your husband, John, has passed. You and your family are in my prayers. Hopefully, knowing that so many people care will bring you some small measure of comfort at this difficult time.

    Debbie

    in reply to: Survival…Please tell us your latest milestone #64763
    debnorcal
    Moderator

    Five months post extended resection (followed by cyberknife focussed on the wound edge due to a few stray CC cells), my husband, Mike’s, blood work and scans look great. Absolutely no sign of recurrence!!!

    Things are looking up and there is hope!!

    in reply to: New Diagnosis: Faith Hope and Love for Mom #88563
    debnorcal
    Moderator

    Dear Jason,

    I am so sorry to read that there are it has come down to palliative care for your Mom. You have clearly done everything possible to search for treatment options. Unfortunately, for many, it comes down to where your Mom is at now. You are so right to focus on your Mom’s comfort and quality of life now, and ensuring that she is surrounded by love will hopefully bring her a sense of peace.

    My prayers are with your family.

    Debbie

    in reply to: New Diagnosis: Faith Hope and Love for Mom #88525
    debnorcal
    Moderator

    Jason,

    Wow, you have “gotten your arms around” your Mom’s situation quickly. You are and will continue to be a great advocate for her. The literature found for CC on Google, and the diagnosis/treatment plans/prognosis offered by even very good general physicians can be very disheartening. Because this is such a rare cancer, it is imperative that patients work with a top medical center. They are aware of the latest research and potential treatments available. They understand when it may be feasible to resect, and if not possible, what the next best line of treatment is. All the other medical facilities take the palliative approach only.

    I completely agree with Cathy and Lainy. My husband’s doctors, including the surgeon, told him resection was not possible. We went to UCSF medical Center here on the west coast, and their expert surgeon successfully performed the surgery in January. Just FYI, John’s Hopkins and Columbia Presbyterian both gave us remote second opinions. They were very helpful.

    Hang in there and please keep us posted on your Mom’s condition.

    Debbie

    in reply to: Goodbye, Sis #88473
    debnorcal
    Moderator

    Oh Krassi,

    I am so sorry to hear of the passing of your sister. You have my heartfelt condolences. Perhaps you will derive some small measure of comfort in knowing that your love and sensitivity eased her transition, and she passed feeling all of the love surrounding her.

    I hope you will continue to come to this board for comfort and support as you begin to process all of what has happened in these few short months.

    Blessings,

    Debbie

    in reply to: My wee dad #88039
    debnorcal
    Moderator

    Carol,

    I just want to add that I am so sorry that your family is going through this very difficult time and you are right in saying that most people can’t relate to what you are going through with this horrible disease. All of us on this board do know and we care and are there for you.

    You are doing all that you can for your Dad and are showing incredible strength. So is your Mom. One day at a time is a good strategy for dealing with this. I’m so glad that you and your Mom have each other to lean on.

    Wishing you peace,

    Debbie

    debnorcal
    Moderator

    Thanks, Marion,

    These findings are encouraging.

    debbie

    in reply to: My sister #88280
    debnorcal
    Moderator

    Dear Krassi,

    I am so glad that you found and joined us. I know you will find a wealth of knowledge and support from our members at this very difficult time for you and your family. I am sorry that your sister is so ill. Because CC is most often diagnosed at an advanced stage, it can turn the patient’s life around seemingly overnight, and that can be a shock to the entire family. I believe that you will find that you are stronger than you ever knew you could be. Staying positive (despite the circumstances), taking one step at a time without focussing on what may or may not come after, and taking care of your sister’s needs so that she can rest will help get you through this. I pray for a positive turn for your sister.

    I’m sure others will post messages as well. Please lean on us as often and as hard as you need to. We are there for you!

    Debbie

Viewing 15 posts - 271 through 285 (of 324 total)