November 7, 2016 at 5:32 pm #69203caliceaParticipant
Don’t loose focus. Get those levels under control and get a new appointment. If they can’t see you try MDA in Houston TX. They are a great team of Drs and will do everything they can to help you… Good luck!!October 30, 2016 at 3:08 pm #69199redParticipant
Jojo, What a disappointment to have your appointment canceled. I can sense the frustration in your message and I totally sympathize with your situation. It’s so difficult to “do the dance” that doctors and institutions demand, especially when so much hinges on it. Marions and Lainy know far more than I do about blood levels, etc. than I do. However, I do know quite a bit about MD Anderson in Gilbert, AZ. My Hubby is being treated there with chemo and is being seen by a very dedicated Oncologist, Dr. Kundranda. There aren’t enough wonderful words to say about both Dr. Kundranda and the facility itself. All I can advise is that you shouldn’t give up and should you finally get an appointment there, you won’t be disappointed in the care and expertise of the staff. I have no idea to whom you should speak there, but I sure hope that you don’t give up.
Warm thoughts coming your way,
RedOctober 30, 2016 at 3:41 am #69198marionsModerator
Jojo….thanks for explaining, I understand your disappointment and emphasize with you. It’s incredible how much depends on the bilirubin levels and how it dictates further treatments. In any case, you should have been informed that the appointment was hinged on lower levels, which I believe need to be near 2.
Given the current drop, your sister may very well be ready to make an appointment within the next few weeks.
Make sure to keep a close eye on your sister’s temperature as any rise could indicate clogging of the stent, which in turn raises the bilirubin and also can lead to a nasty blood infection. Here is a bit more about the subject:
Try not to be too upset about the unfortunate circumstances with MD Anderson, at times these bumps in the road throw us off track, but we continue on.
MarionOctober 29, 2016 at 3:35 pm #69200jojoMember
Hi Marion, yes she was set up as a new patient. Her original diagnosis came from mayo Rochester when she was doing liver transplant tests for her psc, they found cc. She had chemo in VT and infection led us to CCTA they fixed her infection and gave her y90. Reading here I told her she needed to go to a center where they r familiar w CC and she had MD lined up. The scheduler emailed us yesterday and said she was canceling because she is jaundice. We pleaded with her that she had stent change month ago and her number was going down weekly from 6.5 to 4.8 to 3.5 but she just said No. We have plane tickets booked and at least wanted an experienced CC dr’s opinion. She just kept saying , No. We r devasted and shocked how cold it was stated. Any advice please?October 29, 2016 at 3:17 am #69201marionsModerator
Jojo…..I am so sorry to hear of the cancellation and don’t understand the reasoning behind this. Was your sister signed up as a new patient with MD Anderson? Where had she received her original diagnosis?
MarionOctober 28, 2016 at 11:32 pm #69202lainyParticipant
Dear Jojo, Welcome to the best place to be for CC but sorry you had to join us. I think when a patient is jaundiced the jaundice has to be treated before anything else can be done. You need to garner a team around you locally as most likely one of the bile ducts is blocked. An Oncologist will set up the procedure for your sister to get the stents needed to unblock the ducts. Your Sister will get relief quickly. The blockage can cause major infections. Then you may want to continue with the ONC you find and see what he suggests. Most often it is the bile ducts that will cause jaundice. Much good luck to you. Please make sure you use an ONC and a Hospital very familiar with CC.October 28, 2016 at 10:55 pm #7992jojoMember
My sister was scheduled to go to MD Anderson 1.5 weeks for tests and treatment. They informed us today that since her bilirubin is a little high 3.5 that she is jaundice and they can’t treat her and are canceling her appt. We are shocked and extremely disappointed they didn’t even want to see her. Is this normal treatment by MD Anderson to treat cholangio patients like this? Where do we go from here? Thanks Jojo
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