jscott
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While I guess you could think of it as “just one patient,” as I understand it, you were the first, and so far only, cholangiocarcinoma patient.
Batting 1000 is how I prefer to look at it
Jason
Julie,
I do not have any experience with blood clots, but I remember reading that “Patty in Illinois” had to deal with blood clots initially. There might be some relevant information on her blog:
http://pattysjourneyoffaith.blogspot.com/2011_04_01_archive.html
Here is her forum profile if you would like to reach out to her:
http://www.cholangiocarcinoma.org/punbb/profile.php?id=7845
Jason
Diana,
My wife was initially diagnosed as unknown primary. She also had a large (9cm) tumor and medium/small tumors as well. At the time, the oncologist said he was sure that this was the primary cancer site. His reasoning was that since the liver tumor sites were so advanced (large tumor that had spawned medium and smalls), another tumor out there that predated and spawned these, it would likely be enormous and very obvious as to where it was.
I can’t know in your husband’s case, but in my wife’s case, his logic turned out to be correct.
Best,
Jason
You are famous!
The article is behind a paywall, but here is a nice write-up of the results.
http://medicalxpress.com/news/2014-05-woman-cancer-highlights-treatment.html
Jason
It looks like it has been moved to the “meeting library” at the ASCO website.
Here is another link to try:
http://meetinglibrary.asco.org/content/123254-143
Jason
My wife did 12 cycles of Gem/Cis. The entire process took about 4-6 hours depending on how much fluid was required. However, the cisplatin was administered over 1 hour.
Andrea would come to the treatment as hydrated as possible (lots of liquids beforehand). She would then usually get a bag of fluids. They would then keep track of her urine production. After the bag of fluids and assuming enough urine, she would get the cisplatin over an hour. After that, she would get a second liter of fluid.
Anyway, getting cisplatin over 1-1.5 hours is consistent with my experience (although the 2 liters of fluids + gemcitabine made the process take a lot longer)
Jason
Andrea did not really start getting much better until about 3-4 weeks after the last IMRT radiation dose. Even then, the improvement was very gradual over the couse of another 3 weeks.
Her main symptoms were an inability to eat / drink and fatigue. She was able to drink a little room temperature liquid and maybe could hold down 400 cal a day.
Andrea never had anything like confusion, so I don’t know if the situations are comparable. I remember being very worried that she was not getting better and it was 2+ weeks after radiation. In her case, she did start gradually getting better around that time.
Hopefully Mark will start improving as well.
EDIT – I would not say she got worse after radiation ended, she just didn’t get any better. If Mark is getting worse, that is different from Andrea’s experience.
Jason
My wife had slightly elevated liver function numbers. rechecked the tests every month for a couple of months with the numbers getting worse. Got an ultrasound where the GI doc misread the ultrasound report which cost us a month.
Finally after being unable to find any other cause, a CT scan was ordered which identified very suspicious lesions. A biopsy then confirmed intrahepatic CC. Initial suspicious blood work was Nov. 2012. Diagnosis of ICC was April 2013.
Jason
Hi Vineet,
My wife is also a patient of Dr. Kelley at UCSF. We have met with many doctors, and we are very happy with Dr. Kelley. I think Anju will get world-class care from UCSF.
I think there is pretty good research linking liver flukes and cholangio carcinoma. Pesticides would make sense as well, but I have not read about that link.
However, my understanding of cancer is that getting rid of the triggering “cause” (i.e. either pesticides or liver flukes in this case) would not cure or even treat the cancer. As I understand it, cancer occurs when the DNA of a particular cell gets so messed up that the cell starts replicating uncontrollably. The original cell DNA could get messed up by chance (e.g. just random mutations during cell division) or the DNA could be more likely to get messed up under certain conditions like inflamation from liver flukes.
Anyway, once the DNA has mutated, and the cell growth begins, removing the contributing factor such as liver flukes or pesticides would not stop the out of control growth (but I guess may make future mutations and cancers less likely)
Keep in mind, I am not a doctor, so I may not have all of that exactly right, but I did want to at least describe my understanding.
If you are interested in more information, the national cancer institute has this description of cancer:
http://www.cancer.gov/cancertopics/cancerlibrary/what-is-cancer
You are a great brother for trying to figure out ways to help your sister. I wish her and you all the best.
Jason
In the paper, they define major hepatectomy as:
“resection of more than three segments defined according to Couinaud’s classification”
If you are not sure, I would ask your doc or surgeon if your resection fit this criteria.
Jason
I am a little bit confused. “Early stage pipeline data” sounds like Lily was going to release some data from their phase 1/2 trial. However, “preclinical evaluation” seems more like mouse model type results.
Here is the AACR abstract:
Looks like cell lines and mouse models. Still good stuff, but I was hoping for some good news data from their trials.
Jason
