lisa
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Apparently it was on line 65 of page 12 of the information packet that was sent to me.
I think this falls under the category of “things we don’t want you to know but are required by federal law to inform you.”
Hi Maria, I am a survivor. I was diagnosed in 8/07 so I am also a three year survivor. They attempted to remove the tumor in 3/08, but it was unsuccessful, but I’m still around despite all projections and prognostications.
My doctor never talks about tumor markers. What we look at are the liver numbers (which were normal today, thank God!), the bilirubin, and the CBC counts.
I hope that the doctors can come up with a new plan for you and Karl. BTW I am in the Seattle area as well.
I pray for you and Hans every night. Praying that all goes well this weekend, that you can be kept as comfortable as possible, and that the surgery is successful. Love and hugs coming your way!
Lisa
Hi Lisa and welcome to the board.
If your mother gets a stent put in, it is through an ERCP procedure. In your mom’s case, they may just go in and take a look around before deciding what to do.
As a patient myself, I would strongly advise you to tell your mom that they suspect it is a tumor. It is better to be prepared than not. If it is not a tumor, then hurray! Telling your mom also gives her an explanation of why she feels poorly.
There is no saying how quickly cholangiocarcinoma progresses since it seems to be different for each patient. Some people last for years and some for weeks. It depends on many different factors that are really unknown at this time. Overall, if a person has been or is generally healthy, I believe that helps lengthen survival time. A positive attitude on the part of the patient and the caregiver helps as well. I hope that your mom will be one of the long term survivors!
Hi Emerald,
I was diagnosed three years ago at age 44. I have had stage 4 cc for about 18 months now or so. I’m still alive and kicking! I am doing well so far and there is no reason to think that you won’t do well for some time to come. Cholangiocarcinoma treats us all differently for some reason. It’s a very capricious disease.I was on Gemzar last year, and now am back on it again with Irenotecan.
Gemzar was the least objectionable medication that I’ve had as far as side effects are concerned.I hope you enjoy Paris and Jimmy Buffett – who would have thought of that combination? Good to hear that the surgeon has come up with a viable plan. I think you should go for it, too.
Love and hugs for you and Hans headed your way!
Lisa
Thanks for the update. I do remember you in my prayers every day. I’ll pray for positive results on your scan. With all you have been through you deserve some good news!
