rosegrace
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My MIL looked into a clinical trial at Mayo. A major reason for not entering it was because the costs, if there were complications were not covered. One of her two insurances was not going to cover Mayo anyway, so it could have potentially cost her money to be a part of the trial.
Cathy-
Thanks for your advise. She is having gem/cis at University of Iowa and in a couple months they will revisit her MRI and she may be placed on the transplant list. We are keeping our fingers crossed for that…My MIL will be treated at University of Iowa due to issues with her insurance company in regards to Mayo.
We have lived in KC for almost 10 years having moved here from Iowa. We live north of the river close to the airport. I have never been to Winsteads, I guess I will have to try it out now
Thanks for your responses! I will pass them along. She started having symptoms in early January of itchy and a little chest discomfort. Besides the 2 stents, she hasn’t had any treatment. Its just amazes me how long it takes to get the ball rolling.
After the second ERCP they placed a metal stent at Mayo for a distal common bile duct tumor. Cytology reports mets to lymph node and porta hepatis. My mother in law is not a candidate for liver transplant or whipple. Mayo Onc recommended the gem/cis regime of chemo. The onc said it was a mild chemo. We are wondering what mild means. The family would really appreciate any advice of what to expect or what questions to ask. From reading it sounds like she needs a RX for nausea and something lined up in advance for dehyration.
What can we expect? What can we do for her? What questions should we be asking the onc. She hasn’t started yet. Her insurance will not cover Mayo so she is going to a different hospital for the chemo.
Thanks for all your help. The info on this site is so helpful. I don’t know where people would be without it.
Thanks Marion,
We are still deciding what to do. Joanie doesn’t want to do the chemo if it will make her really sick…Lainy- did you have luck emailing Dr. Javle? I searched the discussion board and say a thread where you had tried that route.
Rainy day at the beach, so we are spending time around the computer working with this.
Joanie does have a plastic stent right now, but the itching and jaundice and dark colored urine are back, she has an appointment next week to place a metal stent at Mayo.
The insurance is denying coverage at Mayo because they say she could have it done at University of Iowa because that is in-network and Mayo is Out of Network. She has not been to the U of Iowa, so maybe they will refer her to Mayo anyway—that is our hope.
Does anyone have an email for Dr. Javle at MD Anderson– we are thinking of getting a second opinion as so many of you have suggested him.
Wow! Jim’s story is so similar to Joanie’s. Thanks for sharing. She started having symptoms in Jan 2013 as well. (She is 67 in otherwise great health) The team at Mayo had advised do nothing or chemo. We are trying to figure out what to do as well. Keep us posted.
