debnorcal
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Carla, I’d like to “officially” welcome you to our group. I did the same thing as you when my husband was first diagnosed – read many posts and searched various topics. The information I found was invaluable to me in terms of understanding this disease and treatment types. It took me about a year to finally post. I am so glad I did because I’ve connected with so many knowledgeable, caring people -it’s been a tremendous support. I’m sure the group will be a source of support for you as well.
It sounds like your husband is in very capable hands at MD Anderson, and it is encouraging that the photon radiation seems to br shrinking his tumor. As you’ve probably read, even if a patient is currently unresectable, doctors are having success with several newer treatments, and researchers are working to develop more across a number of areas. So, there is more hope than ever for successful treatments against this awful disease. I wish continued shrinkage and improvement for your husband, Jeff. I hope you will continue to update us on his progress and engage with us as you are comfortable doing so.
Debbie
Paul, welcome to our discussion board. I am sorry your wife has been diagnosed with CC, but you have come to the right place for information and support. I am glad you are getting a second opinion from Duke, as it is so important to be seen by a major medical center with expertise in CC. Please keep us posted on the second opinion and please ask as many questions as you want on this board- we have many caring, knowledgeable members that want to make your journey easier.
Debbie
I would also like to welcome you to our group, Tnmikishell. You have come to the right place to get information and support. We believe very strongly in getting a second opinion from a medical center that has expertise in Cholangiocarcinoma, as they are far better prepared to aggressively treat CC with the latest and best treatment protocols.
I wish you and your husband all the best. Please keep us posted.
Debbie
Hi Jennifer and welcome to our discussion board. I have not heard of the doctors or medical treatment centers you mentioned, so I suspect they do not have substantial experience with cc. We are located on the west coast and utilized the wonderful services of UCSF. We did, however, obtain a surgical second opinion from Johns Hopkins Medical Center in Baltimore. They will do a remote second opinion for a reasonable fee($500, I think). You would need to specify whether you are requesting a medical or a surgical opinion. My feeling is that if surgery is potentially feesible, the surgical opinion is most valuable. In our case, the JH opinion concurred with our primary Doctor that my husband was not resectable at the time but strongly encouraged us to have the gem/cigs to achieve shrinkage and become resectable. That is what we did and all went well. Even if JH just provides an opinion, if you search our provider list, you should find centers with expertise within driving distance of Philly.
Best to you and your mom.
Debbie
Hello, Arapro,
First, congratulations on your successful treatments last year. That is such a huge positive.
I do not have much knowledge or experience with the afp indicator, but I wanted to let you know you will be in expert hands with Dr. Abou-Alfa of MSK. You did the right thing by quickly getting an appointment with him. I’m sure he will be able to figure it out. To me, it sounds encouraging that all other indicators are normal for you. (But I am not a doctor).
Please keep us posted on Dr. Abou-Alfa’s findings. Hopefully, something innocuous caused a temporary rise in afp level.
Debbie
Fabulous news, Matt!!! Mike and I are so happy for you.!
Also, how incredibly inspiring for so many on this board!
Debbie
Matt,
It’s nice to hear from you. Glad that you are doing well. Look forward to more good news with your next post re: CA19-9 results.
You are one of our shining stars – providing hope to many of us!
Debbie
Melissa,
I would like to welcome you to our discussion board family as well. I wouldn’t assume you are not resectable based on opinion of a medical generalist. There are many folks on this board that were told that by their community doctors/hospital staff, only to be told they are resectable by a CC expert. My husband is an example of that. Many others become resectable after achieving shrinkage via chemo. I think you are doing the right thing by seeking out a top specialist. All the best to you.
Debbie
