February 19, 2008 at 8:37 pm #19239marionsModerator
your wonderful blog is one I have been reading all along. So sorry to be hearing about Joe.
In our case, when addressing the stent placement, we contacted several gastro. doc’s and asked for referrals. Interestingly, it seemed that most were leading us to one specific physician specializing in this particular area of gastroenterology whom ultimately, we chose for the procedure.
I would assume that by calling Northwestern or even your local hospital you most likely will have plenty of physicians to call on. Also, although your current oncologist may or may not agree with your type of treatment you had chosen for Joe, she may very well be able to connect you with a reputable physician with quite a bit of experience in this area of stent placement. My standard questions: How many of these procedures have you performed and have you ever treated anyone with CC?
I am thinking of you and sending my best wishes and tons of hopeful thoughts your way.
MarionsFebruary 19, 2008 at 8:16 pm #1107maryanne80Participant
Well I haven’t posted in a long time although we have a blog under joesinformation.blogspot.com . We have had a fairly smooth ride since Joe was diagnosed in July of 06 but it looks like were are at a major hurdle now. His only symptom was a queasy stomach. We opted for no conventional treatment and then last March started IPT treatments. He had an RFa on one of his three liver tumors which was successful last June. He has multiple tumors in his lungs. We have been able to go with our life until now when over the weekend I noticed his eyes were yellow. You couldn’t see it on his skin because he is tan but it does have a yellow tinge. His urine is also very dark brown which I think means his bilirubin is out of whack. We are currently in Bonaire in the caribbean or should I say I am. Joe flew home to Chicago today and will have an MRI and an MRCP Wed. and Thursday. His doctor was nice enough to take my fax from here and go with my suggestion. up til now he has only had PET scans but from this website I could see that an MRI gav more specific info on the bile ducts and the liver. He has intrahepatic and although he has been diagnsed for 19 months, he has had symptoms for 29 months so I know we have been lucky to have such a good journey so far. I know we are in trouble now and am waiting to hear th results of th tests to fly home. He had expected to fly back in a week but I think that is unrealistic. Our main purpose for being her ewas to get out of the Chicago winter weather but our secndary was to scuba dive. With this jaundice he cannot do this because he needs his liver to detoxify the nitrogen.
So long story shorter, if he needs a stent, can any hospital do it or do you have to go to a big one like northwestern? We have an oncologist at Northwestern but she has pretty much written us off bcause we went alternative. We ‘re working through our internist now and the doctor doing the IPT. Could you share your experiences with stents and whether he needs a major hospital to have this done. I am a nurse but when it comes to your own, it is a whole different story.
I am looking into flights home but this is high season. I look forward toyour suggetions and comments. We pray for all cc patients and know we ar on the far end of the bell curve but we aren’t ready to give up yet. God bless Mary Anne
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