julieanne
Forum Replies Created
-
Posts
-
Margaret….this is exactly why I swore the VA was not going to touch my husband once he was diagnosed…..the Charleston VA is practically right across the street from MUSC. Ott could be getting his drugs from the VA….IF he went thru their Oncology department first and then got referred back to MUSC.
But I have a BIIIG Problem with the VA— IN June of 2009, he went to the Columbia, SC VA for an initial physical and bloodwork. He was diagnosed with high cholesterol, given a prescription for Simvastatin, and told that he would be scheduled for a follow-up appointment. We requested an appointment for a colonoscopy because he had had polyps in 2004 and had undergone a colon resection. We were told that the Nurse Practioner had not written a note about it, so she could not schedule it. Apparently she didn’t schedule the followup either….we tried to call and get an appointment , but were bounced around from office to office and never got through. My husband said to heck with it and stopped taking the simvastatin when they ran out.
Once he was diagnosed in May last year, we went to the VA to get a copy of his health records — he was at the maximum number for “normal” bilirubins….they gave him statins when his numbers were dangerously high, and never followed up!!! I would love to file a complaint, possibly sue……but my husband doesnt think anything would come of it at all….
Very frustrating…..but they will NEVER touch my husband again.
He is really unsure what to think….on one hand they said that the lymph nodes look suspicious, that they might just be irritated because of radiation, but that the cancer may have spread to them, too. On the other hand, yesterday they said that the treatment was effective because the cancer had not grown any further. He is depressed, though, that he might have to endure cycle after cycle of chemo for years just to keep the cancer in check.
Thanks to everyone…..the doctors decided to go with irinotecan paired with more oral Xeloda……….let’s see how it works out. The doctor was really nice today….He explained in great detail the different possible treatments, and why they had been ruled out in Ott’s case. He said that actually, they consider the radiation and Xeloda combo a success because the tumor didnt grow larger. ….. Victory exists in all forms.
Thank you, both, for the welcome. Ott’s tumor is classified as a Klatskin’s tumor…intrahepatic, wrapped around the hepatic artery and the portal vein. The left lobe of the liver is non-functioning. His bile duct was so blocked when they did the initial ERCP that the gastroenterologist could only use the smallest stent. We went to the Minnesota Mayo Clinic, because it seemed that they had the most information about bile duct cancer –they stressed that they saw 100-150 cases a year– we went thru snow storms coming and going….nothing special to Northerners, I am sure, but we noticed we seemed to be the only fools on the road at times.
I had asked about Photodynamic therapy and brachytherapy, but Dr. Nagorney said that neither option was possible for my husband. Photodynamic therapy is only effective for small tumors, they said, and since he has already had radiation, he was not a candidate for the brachytherapy.
