My first posting.
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Ben, the first thing I was told when diagnosed was, “I know what I saw and I know it will come back a false negative”, Dr. Guiseppe Aliperty at Barnes-Jewish in St. Louis MO. was right on. I was immediately put in touch with all the right doctors and 2 weeks after sending it to Mayo Clinic, my diagnose of CC was confirmed. If I had been treated by my local doctors I wouldn’t be here to share my story.
Vanderbilt is a great choice
Lots of prayers-Cathygrsharp……Genetic and molecular testing is rather complex and difficult to understand. .
For the purpose of our cancer:
Biopsy (tumor tissue) is analyzed for molecular alteration i.e. mutation or change in cell function that are CONTRIBUTING to tumor growth and for which we have targeted drugs.
Targeted drugs can be prescribed off-label or patient may be able to enroll in a clinical research study.The below link explains in detail:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=14227Genetic testing (for simplicity only and pertaining to our cancer) looks to identify a heredity pattern.
http://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-
fact-sheetAs always, the physician is the best information resource.
Hugs,
MarionQuestion regarding genomic testing. Does that mean testing of the tumor itself or just genetic testing in general? Since 4 tries to get a positive biopsy sample have failed I’m not sure how we can get testing on tumor itself. ( We haven’t gotten work from pathology regarding last biopsy)
I hope that the biopsy goes well Ben. My fingers are crossed for your wife with this and please let us know how it goes.
My best to you both,
Gavin
Hello Ben, Sounds like a good plan for tomorrow! Much better! I am hoping for the best for you.
For the posts, please DELETE the one with no answers on it. Under the window to post you will see a delete button.
Then you posted this one today 2 times so please again delete the one with no answers. Other wise the posts are going to get lost and you will not get the answers. So keep one of each and make it the one that was answered.Looking forward to hearing the outcome tomorrow!
We have a 4th attempt to get a “good” biopsy scheduled for 10 AM tomorrow at Vanderbilt in Nashville.
The first 3 were made at Centennial hospital here in Nashville.My wife is 76, however, most people think she is 60. She was in excellent health and was almost never sick until she became jaundice. That is what started this nightmare.
Should I copy and paste my original post to the introduction board?
We have a 4th attempt to get a “good” biopsy scheduled for 10 AM tomorrow at Vanderbilt in Nashville.
The first 3 were made at Centennial hospital here in Nashville.My wife is 76, however, most people think she is 60. She was in excellent health and was almost never sick until she became jaundice. That is what started this nightmare.
Should I copy and paste my original post to the introduction board?
Ben…. As Lainy mentioned, you would want your wife’s case evaluated by a center “very” familiar with this cancer. Vanderbilt University treats a fair amount of cholangiocarcinoma patients and I would consider having your wife’s case brought to their attention.
Retrieved tumor tissue doesn’t always yield sufficient evidence of underlying disease, hence an experienced physician may likely begin treatment based on the 99% disease presentation.
However; participation in a clinical research study (clinical trial) must always be confirmed by positive tumor biopsy.
Has genomic testing been discussed with you and your wife, and if so, will it be conducted within the institution?
Hugs,
MarionDear Ben, Welcome to our remarkable family but sorry you had to find us. This is the best place to be for CC support.
You want to make sure that the hospitals your wife has been to are experienced in treating CC. While it is very difficult sometimes to diagnose, my best input would be to seek a 3rd opinion. Did they stent her because she Jaundiced? She really needs to see an EXPERT in this field so that treatment can be determined. We have a Search button at the top of the page and perhaps if you type in Nashville there will be some posts you can use. I am also sending you a post below that you may find helpful. There is nothing wrong about asking the powers that be at the hospital if they treat many CC patients. This looks like a slow weekend here because of the Holiday but perhaps others will be along with some more advise. Can you please move your post over to INTRODUCTIONS as I don’t want it to get lost here. Do you think she is tired from the procedures? If she is not eating that can also make her tired. You might want to try some Nutritional drinks. My husband liked the Vanilla Carnation Instant Breakfast and I would blend in a banana. It can be taken in place of a meal or with a meal even 3 times a day. May I ask her age and if she is in good health otherwise?
I just reread your post and the fact that it took 3 times for the stents to be placed I have a feeling they are not used to CC. Best of luck and please keep us posted.http://cholangiocarcinoma.org/newly-dx/
Is it hard to get a biopsy sample that shows cholangio? Doctors have made 3 attempts and all came back negative. They are 99% sure its cholangio but won’t start any treatment w/o positive biopsy.
MRI and ultrasound, along with PET scan show the tumor to be a little over an inch in size and located where the l and r ducts meet the main duct.
This has been going on now for over a month w/o any progress or treatment. They were able on, the 3rd try, to place internal drainage stents. She (my wife) also has an external drain on the left.
We are in Nashville and are interested in any help anyone can offer that will help us get up to speed and headed in the right direction. So far she has been in two different hospitals for a total of 5 procedures, (all requiring anesthesia and breathing tubes down she throat,) for a total of 14 days over the last 3-4 weeks. She is scheduled for a 4th attempt at a biopsy on Monday.
She is getting weaker daily. Any thing you can offer will be appreciated.
Thanks….grsharp
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