peggyjm

I finally have an update on my brother. He went to Mayo this week and had another ERCP and stent placed on Tuesday. The procedure went well and they were able to place 2 metal stents so that now both lobes are draining. Hopefully that will help with the jaundice so that he can finally begin his chemo treatments. I know that it has been discouraging that he was diagnosed in May and still hasn’t been able to begin his chemo!

I did find a couple of posts on here that mentioned gout in the CC patient, but they seemed fairly old (2007-2009). Just wondered whether other people were affected by it as well. Thanks!

What happened last week is that his local oncologist wasn’t in the office on the day that he called to say that he had become jaundiced again. The ONC called in and got the message and referred him to someone else. The local ONC has treated other CC patients (and did his residency at Sloan Kettering). My brother was referred to the local ONC by his ONC at Mayo and apparently they have worked together. The surgeon who did the ERCP on Friday told my brother that when he was at the University of Minnesota for 6 years that he did ERCPs every day. He apparently called some of his “friends” at the U of M today to discuss my brother’s case and they advised that he return to Mayo. My brother is located in Minneapolis, but in a suburb that is pretty far out of town. I’m not sure, but from his understanding of the situation, the stent was not placed where the surgeon really wants it and it is very temporary? The dr did say that he isn’t sure whether he has another (new?) tumor growing or whether it is an infection. He was placed on oral antibiotics on Friday. The drs office was SUPPOSED to call Mayo today to make an appointment for him to go back, but he hasn’t heard back from them, so I told him that he shouldn’t wait around and should call his ONC’s office at Mayo and tell them what’s going on and say that he needs to come down asap! Mayo does NOT require a dr’s referral. He got in originally by just calling Mayo and telling them that he had CC and wanted to be seen at Mayo. Thanks, Lainy, for your support. It really helps to have someone to “talk” to about all of this!

Well, I just got another update from my brother. Yesterday he had the CT scan and the dr called him and left a message saying that he was very pleased with the results and that they were much better than he expected and that he would call today with more information about the results. So, he was thinking, “FINALLY, some good news!” Then he got a call today. At first the dr. was sounding fairly positive, but then said that when he went to do the stent replacement that he found a cavity that he’s never seen before in any of the other patients he’s seen and that it prevented him from placing the stent where he wanted to. There was also a “pus like” mass that could either be an infection or another cancerous tumor. He apparently feels uncomfortable with this situation and wants my brother to go back to Mayo for more imaging and metal stent placement. So, now he has to wait to get back on their schedule and feels like he has wasted the last couple of weeks. When he was last at Mayo, his bilirubin was at 2, and he was ready to do chemo, but Mayo said that he should be able to have the chemo done and the metal stent placed locally. He’s very discouraged that now he has to go back for another ERCP and all the unpleasant side effects from that and the fact that he is about 2 1/2 months out from diagnosis and they haven’t been able to start any treatment yet. As Lainy said, CC is really a roller coaster ride. I just feel like the clock is ticking away while we’re still trying to get chemo started so that he can start to get better!

Hi, we are still trying to get details, but have heard some sketchy information. Apparently the stent placement did not go well. They were unable to place the metal “permanent” stent and so had to put another temporary stent in. He has some sort of infection so they want to have a CT scan on Monday and also do some bloodwork. They said that they have to figure out the infection before they can put the permanent stent in. His bilirubin is 15, so chemo will have to wait until he gets back down to 3 or below. It’s SO discouraging since it took 7 weeks after the first stent placement for the bilirubin to get low enough for chemo and then the week that he FINALLY got there, this happened before he could start.
Peggy

My brother was able to see the doctor today and a stent replacement is scheduled for tomorrow. They told him that this is a “permanent stent” (whatever THAT means!) that should last 6-9 months. My sister-in-law and nephew will remain in town with him until Saturday, in case he feels up to coming to the wedding.

Willow, I live in Singapore for 9 months/year, but am “home” for the summer. I was still in Singapore when he was diagnosed and I registered.

My brother was supposed to start chemo today, but the oncologist said it was safe to wait until Monday because we have a big family wedding out of state, with people flying in from all over the world for it. Tonight he wrote that the jaundice has returned, he has a low grade fever and is feeling crappy! It sounds like the stent is failing, right? So, most likely he can’t come, which is a big disappointment to everyone, including him! He can’t have chemo if his bilirubin rate is elevated and it took almost 2 months to get it low enough to be able to start the chemo! He’s discouraged. We all are. Hopefully they can replace the stent soon. How long do the stents usually last? The local surgeon had put in a plastic stent and it was supposed to be replaced by a metal one when he had surgery, but then he wasn’t eligible to have surgery. Mayo said to replace it, but that he could do it locally, and the local oncologist said to wait until it fails. What horrible timing!