jim-wilde
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Eileen, Marion has a good suggestion. My adjuvant chemo was directed by an onc 6.5 hours away, but administered by a local onc facility, 15 minute drive. I saw the remote onc at three month intervals, and now six and communicated with her by email with occasional questions. It worked very well.
Nancy, great news and keep it coming. I have a CT coming up in Sept and am hoping for similar results.
Adamaria, welcome and sorry you had to find us. You certainly have a difficult situation. The good news is surgery present the only sure ‘cure’. The bad news is the surgery is a big one. I would be inclined to find the best surgeon you can and let him assess the risks and present them to you to decide the next thing to do. I’m no youngster, but survived a 12 hour resection about two years ago with a world class surgeon, Dr Tomoaki Kato, a real overachiever. The surgery was done at NY Presbyterian in NYC.
Good luck in your quest.
Jennifer, sorry to hear of the loss of your Dad.
I don’t think there is any recognized linkage between any meds and cc. There are geographic, however. Thailand has the highest incidence of cc in the world, although I’m not precisely sure why, although I recall some linkage with liver flukes, which are common there.
I take a number of cardiac meds, but no one has suggested discontinuing any, although BC I only have 50% of liver remaining, doses are now very small.
devastated wrote:He DID have a complete hepatic panel. Bili, alk phosphate, alt & ast were all perfect.Mine were considered fine by all but one of four doctors who noted very slight elevation in the liver enzymes and immediately suspected something amiss. I must add, that she had the benefit of a number of years of quarterly tests. She is considered one of the top cardiac diagnosticians in the country, and Dr. Sun Hi Lee is my heroine. I consider her to be one of the best doctors I have seen during my lifetime.
In any case, cc is very hard to diagnose early without a CT or MRI in most cases. I wish you well in getting treatment for your dear husband.
CC is very sneaky. In most cases (and mine), there are often no obvious outward symptoms when the disease is quite advanced. In my case, the early diagnosis came as the result of a routine liver function test because of cardiac meds I was taking and a very alert cardiologist who immediately smelled a rat (cc). I had zero symptoms until not long before surgery, then the jaundice and all over itching happened. These symptoms were relieved by stents placed during an ERCP to confirm the diagnosis. I suspect in your husband’s case, the disease was present silently for a long time, just no symptoms and the blood tests typically done during a physical would not detect it. Probably good reason for adding a hepatic function test to the routine physical tests.
More opinions is always good, unless you are very confident in the diagnosis and treatment plan. Good luck.
Welcome and sorry you had to find us. I would suggest sticking with opinions from major cancer centers, as they have the experience with CC others don’t have. There’s only about 2000 cases annually diagnosed in the US, so smaller hospitals and medical centers see cc only rarely. Cleveland Clinic is certainly among the ones I would consider. I’m personally not familiar with TrueBeam STx radiation therapy, but that doesn’t mean much. I was treated at Columbia Presbyterian in NYC (nowhere near where I live) because of their reputation. Has your husband had an ERCP (special endoscopy) done yet? If not, I would expect Cleveland Clinic will want to do one.
Try to stay positive and focused on coming up with a treatment plan and always be prepared to get additional opinions if your not comfortable.
Good luck!
Tim, I’ve been thinking of you and your father constantly since we spoke last Thurs. I am so sad this did not turn out the way you hoped. I am so at a loss for words. Hold the good memories of your Dad close. My thoughts are with you, your mother and family.
Nikki x, I did have cc and my CA19-9 levels went to somewhat over 400. Following surgery 4/09. the levels eventually stabilized at < 20 and have stayed there. Note that the CA19-9 test has considerable variability (for the same patient), and as Lainy has pointed out, should be used in conjunction with other diagnostic tools such as imaging, ERCP, etc. It sounds like your family was put through a meatgrinder due to ineptitude by more than one practitioner. I guess now, you can start counting your blessings. Good luck to you and your family.
Susie, I had a resection 4/09, and am still clean. I had only Gemzar, based onc’s strong recommendation. Chemo was a six month deal started about six weeks after hospital discharge.
Good luck.
Charlene, I would be actively seeking alternative opinions on surgery and for the short term forget the going back to work thing, assuming the U of C opinion is not positive. Surgery is the only known cure for cc, time is not your friend, and you need to not get too focused on one opinion. There will be plenty of time later to think about your dad’s work. Focus now on getting well and whatever that may take. Believe me, in the short term, that’s all consuming, at least it was for me and I only saw one surgeon, but was fully prepared to go anywhere, if necessary.
I had a wonderful lady cardiologist who made sure things really moved at a brisk pace, and it was never quick enough to suit her. She’s one very special person in my life. She had to lobby the surgeon to take me as a surgical patient BC I have a number a serious cardiac issues, and in fact had several events during the 12 hour resection. It’s now over two years from surgery and I’m still clean.
Good luck on your quest.
While I cannot comment on whether or not your father is a resection candidate, the surgeon who did one on me several years ago, Tomoaki Kato, has a reputation of being a very creative surgeon, and has successfully operated on a number of patients considered ‘inoperable’ by one or more others. My situation was not so much inoperable, as it was high risk due to a number of factors (serious cardiac issues, etc.). I had several cardiac events during surgery, but no harm done. I’m now into my third year clean. My friend Kim had a much more elegant (translation: difficult) surgery almost a year ago. She was declined surgery by three major Phila. hospitals as well as Robert Wood Johnson in NJ. I consider Dr. Kato a miracle worker.
I’m sure there are circumstances that do make a resection impossible, but there are a lot of situations that just make it very difficult, not impossible. I wish you well in your quewst for treatment.
Sorry you had to find us. I would take it as a very positive sign that you father qualifies for a resection. It’s the best chance of a ‘cure’ with CC. I had a resection over two years ago, and am still clean. This is a big surgery, but nio reason to expect your father couldn’t survive it. I’m around his age, and have serious cardiac issues, had several events during surgery, but survived with no damage done. The surgery is long (mine was 12 hours). Make sure you are completely comfortable with the surgeon and hospital, and the rest will be in the hands of God. Wishing for a good outcome for you and your father.
Let us know where and by whom your father is being treated.
