gk
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Hi, Jim–
I’m sorry to hear of your diagnosis, but it sounds like your doctor put you on the right track by recommending CINJ. My dad was dx with cc in 12/07 and has since been receiving treatment in the Philadelphia/South Jersey area.
CINJ is a really good place to start in finding the best treatment for cc, as they have an actual Liver Cancer and Bile Duct Cancer Care Program (http://www.cinj.org/treatment/Liver.htm), which allows you to see different specialists on the same day, who then consult on your case. They also have affiliations with the best treatment centers in the region.
My dad has been receiving chemo and cyberknife treatment at facilities in the Cherry Hill, Mt. Laurel region that are associated with Cooper Hospital. His experience with these has been positive.
I’m not sure how useful that is to you, but please let me know if there’s any other way I can be of help.
-georgina
Hi, marions–
Yes, I did get this message from Catherin, which confirmed a lot of what I’ve read elsewhere about inflammation and CK treatment. I’m particularly interested in whether it’s possible that the inflammation from CK might be interfering with his liver/kidney function, therefore causing the edema. I guess there just isn’t a lot of info out there about how CK interacts with cholangiocarcinoma specifically.
*Speaking of cyberknife, I think Barbara Walters is going to be interviewing Patrick Swayze tonight about his CK treatment for pancreatic cancer, which should be interesting.
Thanks, marions!
Hello, all–
Hope your New Year is filled with health and happiness. I just spoke with my dad, who filled me in on his post-Cyberknife experiences thus far. We really appreciate all your feedback and good wishes.
Lainy– My dad did have fatigue following CK for several weeks. He also had one instance of nausea. Other than that, he’s tolerated it without any major side effects. Thanks for passing along your radiologist’s description of the post-CK tumor shriveling up over a period of months. That’s something I hope your husband and my dad can look forward to. I will keep you posted as to his experiences.
Marions– Since the edema, my dad hasn’t had a blood test, but he’s scheduled for one on Wednesday, I believe. The last blood test he had was on 12/19, and he was told then that things were OK. He has been trying to keep his legs elevated (the CK site said “toes above nose”) and avoiding salt. However, he still has the same amount of swelling in his feet and legs despite the diuretics. As far as fluid retention in other areas, we are unsure, because there’s hardness in his abdomen from a previous injury (long story) when he had his rectus abdominis removed and placed on his shin. Anyway, that hardness has been present since about a year and a half before his diagnosis of cc.
Best,
gk
Hi, Marions–
Thanks for your good wishes!
My father did have a scan a few weeks ago that showed no visible change in the tumor. However, my dad’s Cyberknife doctor is on vacation, and so the scan was interpreted by his oncologist. This doctor did say that it could be that the mass in the scan is the dead tumor that the body has not yet flushed out.
On the Cyberknife web site, I asked about any possible connection between the CK treatment and edema. Two doctors responded, saying that it’s probably not CK-related, and that my dad should keep taking the diuretics and elevating his legs as often as possible. I sent away for a leg pillow from LoungeDoctor, which I hope will be an improvement on the pillow-fort he keeps building at the foot of his bed with regular pillows.
Best,
gk
Many thanks for your feedback. It’s incredibly helpful and encouraging to me. I feel so lucky to have found this site.
I will definitely take your advice about seeking multiple opinions on whether gemzar is the way to go.
In the meantime, my dad has an appointment tomorrow to see if he is a candidate for CyberKnife radiosurgery. I don’t know much about this treatment (something about a robotic arm?!) but it sounds like a promising option.
Again, I so appreciate all your thoughts and guidance.
Best,
gk
