Eli
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mickeydtx, have you done a PET scan? You didn’t mention it in any of your previous messages.
The study below quotes 94% sensitivity for a combination of PET/CT and conventional CT.
http://www.biomedcentral.com/1471-2407/11/188
Part II of the same paper:
Comprehensive review of the diagnosis and treatment of biliary tract cancer 2012. PART II: Multidisciplinary management
http://onlinelibrary.wiley.com/doi/10.1002/jso.23027/abstract
A small clinical study of SpyGlass:
http://www.ncbi.nlm.nih.gov/pubmed/17466202According to the study, SpyGlass biopsy has a sensitivity of 71%. The measurement was based on a very small sample of 19 patients.
Here’s what Wikipedia says about test sensitivity:
Quote:If a test has high sensitivity then a negative result would suggest the absence of disease. For example, a sensitivity of 100% means that the test recognizes all actual positives – i.e. all sick people are recognized as being ill. Thus, in contrast to a high specificity test, negative results in a high sensitivity test are used to rule out the disease.A sensitivity of less than 100% means that, in certain number of cases, negative SpyGlass biopsy fails to recognize cancer.
I think I saw two cases of benign strictures on this board.
Isaac-1 had a negative SpyGlass biopsy. He underwent surgery anyway, because his doctors couldn’t rule out CC. The stricture proved to be benign on the final pathology. You can read all Issac-1’s posts here:
http://www.cholangiocarcinoma.org/punbb/search.php?action=show_user_posts&user_id=7638
I will post the second case if I can find it.
Liz, you work in a hospital if I remember correctly. Chances are your hospital has an institutional subscription to access the articles behind the paywall.
Oh yes. She lost weight while she was stented in the weeks before Whipple. She lost more weight while she was recovering from Whipple. She lost yet more weight during chemo-radiation. Her normal weight before diagnosis was around 130 pounds. By the end of chemo-radiation, her weight dipped below 105 pounds. She has since regained some of it back. She currently weighs around 110-112 pounds.
My wife had the surgery in July 2011. She took Domperidone for a few weeks after the surgery. So it’s been a while since she took it on a daily basis. We can’t recall any issues or side effects.
Domperidone side effects
http://www.google.com/search?q=domperidone+side+effectsI’m in Canada. My wife took Domperidone for a few weeks after her Whipple surgery, to help with a problem called “delayed stomach emptying”. It’s a common issue after Whipple. She still occasionally needs Domperidone, when she feels like her stomach is “filled with stones” (her words).
My understanding is that Domperidone can also be used for nausea. Our doctors never told us to use Domperidone for that purpose.
For chemo-induced nausea, my wife took Zofran and Stemetil (Compazine). Zofran twice a day as the main anti-nausea medication. Stemetil (Compazine) in between Zofran on as needed basis, to deal with break-through nausea.
EDIT:
My question to you is, why was Reglan prescribed to your son? Is it for nausea?
My best wishes to Lauren. Keeping fingers crossed that the mapping will be successful, to give a green light to the real procedure.
Hi Grover,
I was worried about your absence from the forum. Good to see you back. I hope your trials and tribulations are finally behind you. Wishing you a smooth recovery from now on.
Eli
Hi Percy,
You wrote:
Quote:If people want to find out more;as some members indicated, our site-the cholangiocarcinoma.org is doing much much better ; the problem though,is how we can improve the chances for them to find us. Any thoughts?I wouldn’t worry about this. Our forum has an excellent exposure on the Internet. When I google very specific CC topics, I usually hit forum posts. Right at the top of the first Google page.
To give you an example, I just googled “cholangiocarcinoma chemo nausea”. The first two results point to this site. You can’t ask for a higher profile.
Hi Jose,
Here’s an older thread on this subject started by the author of that video:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=4337
Dendritic cell immunotherapy was used to treat CC in a small clinical trial done in Japan:
http://www.ncbi.nlm.nih.gov/pubmed/21874278
http://www.ncbi.nlm.nih.gov/pubmed/16715430Hyperthermia therapy is being tested in the ongoing clinical trial in the US:
http://clinicaltrials.gov/ct2/show/NCT00178698?term=Hyperthermia&recr=Open&cond=cancer&rank=1
I’m not aware of any clinical trials that combined hyperthermia with dendritic cell immunotherapy.
Percy, looks like your link was cut short. Here’s the full link:
http://www.express.co.uk/posts/view/314887/I-feel-on-top-of-the-world-after-beating-liver-disease
EDIT:
The article mentions survival stats that look very grim. I think they mixed up some numbers. It looks to me they misquoted 5 year survival rate as 1 year rate.
