Another new member

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!

When he had his first ERCP and stent placement, he had a really rough first night. I told him to let the surgeon know, because they do have pain medication that they should be able to give him for this round so that he doesn’t have as much pain. His stent placement is scheduled for late this afternoon, so I’m really hoping that he is feeling better tomorrow morning. It’s a 5-6 hour drive to the wedding, but the wedding is going to be in Iowa City, and he’ll be within a mile or so of the University of Iowa Hospital, so there is excellent medical care available here. Thanks for all your caring and concern!