debnorcal
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Victor,
Sending positive thoughts and prayers your way. You are one of the luckiest patients, so many are not eligible for curative surgery. May your outcome and recovery be better than you could even imagine!
Tomorrow, Jan. 11, our family will be celebrating my husband’s first surgery anniversary. Tomorrow marks one year cancer free for our Mike! Maybe January 11 is an especially lucky day
Evan, I am so sorry to rad of the loss of your beloved wide Dawn. As a relative newcomer to this board (spring 2014), I did not have the good fortune to meet you or Dawn. Thank you for taking the time to post here about Dawn’s passing. From comments, I can see that she was well loved by many here. I wish you peace and comfort at this very difficult time.
Debbie
My husband, Mike, and I will both be attending. We are so pleased to have the opportunity to meet/share experiences with some of the members of this wonderful family. Also, to hear firsthand the latest information on research findings and successful treatments directly from some of these amazing scientists and doctors and lastly, we hope sharing our experiences will help others in their journeys.
Debbie
Hi Jim,
I’d like to welcome you to this site also. I’m so sorry that you, your wife and family have to experience this awful disease. I can tell from your descriptions that you are an outstanding caregiver and advocate for your wife, and that is and will continue to be so valuable to her. She can focus on resting and trying to feel well while you take care of all the medical needs and staying on top of treatment options.
I was in your shoes re: travel two summers ago. My husband insisted that we take the kids on an awesome family vacation despite his poor health. I did the same as you – researched hospitals for unexpected complications, packed all medicines, thermometer, Bili card etc. it was stressful for me to leave the security of our trusted doctors, worrying that he would become ill on the trip, and on and on. We took the kids to Hawaii for 10 days and it was truly the trip of a lifetime for all of us. My husband developed fever and chills midway through the trip, but we were able to manage it with Tylenol and rest for 24 hours. Overall, the trip was SO worth the worry.. It sounds like you are very well prepared. I hope that all goes well and you and your family have a fabulous time together. You are giving your family a precious gift. Peace to you all.
Debbie
Surfer1,
I am so sorry for your loss. I am on west coast time also and thought I’d take a quick read of this board before going to sleep, and I was so sad for you and your husband when I read your message. This disease is just awful and it takes so many dear loved ones from us. Please know that many people in this community care and are there for you at this difficult time.I wish you peace,
DebbieJulie,
I will be praying for a successful surgery for you tomorrow, with an easy recovery and an outcome even better than hoped for.
Debbie
Victor,
We live in the east Bay Area and were with kaiser when my husband developed itching, jaundice etc. it took kaiser more than a month and 6 re ps, spyglass, ca 19-9, all of which were negative or inconclusive, to finally diagnose cc. And it was only diagnosed through an aborted resection. In our opinion, kaiser is very good at routine medicine, but is absolutely not equipped to treat cc aggressively. They would not even pay for a second opinion outside of kaiser. We found Dr. R. Kate Kelley, GI Oncologist and she has been outstanding. We are thrilled with our doctors at ucsf nd my husband’s prognosis under their care. I would highly suggest you contact Dr. Kelley immediately. You may want to read through my posts detailing my husband’s journey. Feel free to message me with any questions. Wishing you all the best.
Debbie
Hi and welcome, Rosalie,
Sorry for jumping into the discussion late. I’ve been having problems logging in so I’ve been able to read this board but not respond.
Many CC patients test negative for various scans, tests, etc before they are ultimately diagnosed with Cholangiocarcinoma. By nature of the disease, it can be tricky to find and test accurately. In my husband Mike’s case, he had his first symptom (elevated liver function tests) in December, 2014 and wasn’t formally diagnosed until May, 2015 based on a biopsy of tumor material obtained in an aborted resection. Once he presented with medical symptoms (pain, itching) he had several ERCP procedures with negative “brushing” results, CAT scans, an ultrasound, and a PET scan, all of which were negative. CA 19-9 was also normal. Then a “Spyglass” procedure (essentially a fancy ercp) showed suspicious strictures in the bile ducts, but brushings were again negative. Even when Mike finally had a direct biopsy during the attempted surgery, the results were inconclusive. The slides were sent to a specialty lab where the positive diagnosis was made. (I should note though, that subsequent to the diagnosis, the liver tumor was easily visible in an MRCP.) I think our path to diagnosis is longer than most, fortunately.
My husband was ultimately able to have a successful resection and has been healthy with no sign of disease since the January, 2015 resection. Ours is a story of hope and there are more and more successes presented here each week. If I can be of help in any way to you, please let me know. God Bless in your journey.
debbie
Matt,
I have read a bit about Keytruda, but am not familiar with it. Sounds promising. Good for you! Another example of one of our members staying positive and searching for the best option currently available paying off!!
debbie
Bridgette,
Welcome to our group and congratulations on your successful surgery. Your prompt diagnosis and surgery at one of the top CC treatment centers in the country bodes well for a positive long term outcome. Thank you for taking the time to introduce yourself and share your great results with us. We love hearing good news!
Wishing you all the best.
Debbie
Greg,
From your description, there are many positives to focus on, including detection at a relatively early stage and clear margins! I know even with a successful resection, it can be nerve-wracking wondering if the CC will return. I think you have a lot to be optimistic about, and you have a great attitude.
Wishing you all the best.
Debbie
