debnorcal
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Dear Anna,
You and your family have my deepest condolences. I am so sorry that you lost your dad to Cholangiocarcinoma. Even though progress for treatments is being made, we lose far too many to this awful cancer.
Thank you for posting your note and Felipe’s obituary. What a beautiful tribute. It sounds like he was a deeply caring, warm person that was beloved by many. The love and support you and your family gave him as he battled CC surely comforted him. I’m glad you found our board found information to be helpful. We are here to support you during this most difficult time as well.
Wishing peCe to you and your family.
Debbie
Once, when assessing prognosis, my husband’s Doctor commented that with CC, there is “good tumor biology” and there is “bad tumor biology”, and the good reproduces more slowly. We didn’t ask for more details at the time. I’m sure he was simplifying for us, and to me it sounds like he was referring to something similar. It may make sense to dig a little deeper on this issue.
Wonderful news, Julie! It’s so very nice to hear from you. Sending loads of positive thoughts for continued healing.
Debbie
Goofily,
Thank you for taking the time at this very difficult time, for posting your update. I am so sorry that Bill’s health has taken this trajectory. You and he will be in my prayers.
Debbie
Another thought is that people that take statins assuredly have accumulated cholesterol/plaque in their bodies. This is likely causing inflammation in the body, which can set the stage for development of cancer. Perhaps it’s the high levels of cholesterol that starts the cancer? Just a thought.
My husband was diagnosed at age 55. He has familial hyper- cholersterolemia (inherited high cholesterol) and has been on statins since his early 20’s. He had two heart attacks 2008/2010 and has stents. He was pretty good about eating a low fat/cholesterol diet. He had polyps removed from his esophagus years ago. He exercised regularly, drank only moderate amounts of wine, and was generally considered by his physicians to be in good health. We recently read that chronic lack of sleep can cause inflammation, and he has a long history of extreme difficulty sleeping through the night. Also, about 20 years ago, he traveled to South Korea (high prevalence of liver flukes) and he is an adventurous eater. So in my husband’s case, there seem to be many different avenues that are suspect.
Debbie
Crissie,
I’m sorry that you lost your dad to this awful disease. Just wanted to say I agree with Gavin and Darla. When my husband was diagnosed, I was worried that my sons might develop cc, and I scoured the Internet searching for information on this topic. Every bit of information I came across indicated that there is no evidence of a genetic inheritance. I hope this is also reassuring. I also hope that soon we will have tests to screen for cc that will enable doctors to diagnose it at a much earlier stage. Early detection would greatly increase curative treatment options and result in better survival rates.
Debbie
Mary,
My husband’s follow up schedule was almost identical to yours. Close monitoring following surgery and precautionary radiation, then CT scans, chest and abdomen, plus blood work every three months. Subsequent to his two year surgical anniversary (Jan 2017), his doctor stretched the follow up to four months with CT of abdomen only, plus labs. Following this upcoming appointment in April, we expect her to order follow up at six mo the intervals. CT scans will alternate with/without chest.
Hope this is helpful!
Debbie
Summer,
My husband’s experience with gem/CIS was similar to that of Catherine’s mom’s. He had it once a week for three weeks then one week off. That is considered “one cycle”. He completed 5 cycles and tolerated it fairly well. Always extreme fatigue 4-5 days after infusion. We finally asked dr. To continue steroid through day 5 and that helped reduce fatigue considerably.
Debbie
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
Karen, welcome to our wonderful family. I am glad you were able to have a successful resection! Hang In There while completing the chemo. Hope you are feeling well.
Debbie
