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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 20
Thank you all for your kind words--they help!
And, Lainy, I've received signs/winks!
Hugs to you all,
My beloved brother, Mark, passed away yesterday. We are devastated. I want to write more about what a special person he was, but I can't right now. I just needed to tell someone who, I am sorry to say, knows exactly how I feel.
It is my understanding that Medicare has divided the US into zones. Each zone has it's own insurance provider/administrator. Each zone has discretion as to whether it wants to cover liver transplant for CC. If a medical center wants Medicare to cover liver transplant for CC, then they have to work with the Medicare provider and get them to approve the medical center's liver transplant for CC protocol. Once Medicare approves their protocol, anyone who successfully completes the protocol will be covered.
The two centers that I know of in my experience that have had their protocol approved by Medicare are:
UCLA in Los Angeles, CA
Barnes-Jewish Hospital in St. Louis, MO
If anyone else has any additional information or medical centers to add to the list, please comment.
The meetings at Barnes went well. We didn't get to meet Dr. Chapman as he wasn't in the office that day, but we met Dr. Doyle. She was impressive! Actually, we were very impressed with everyone we met there.
Now we wait for Barnes to decide whether to accept my bro into their program...
I just want to scream, "WHAT IS TAKING YOU SO DANG LONG TO DECIDE?!?"
Ahhh, that felt good. Thanks
Thanks for all your support and good vibes!
My brother is meeting with Dr. Chapman tomorrow! I can't wait to meet him.
Re: Medicare--it's my understanding now that the country is divided into Medicare zones. Each zone has it's own insurance provider/administrator. Each zone has discretion as to whether it wants to cover liver transplant for CC. If a medical center wants Medicare to cover liver transplant for CC, then they have to work with the Medicare provider and get them to approve the medical center's liver transplant for CC protocol. Once Medicare approves their protocol, anyone who successfully completes the protocol will be covered.
Re: California--the UCLA protocol is accepted by Medicare.
So happy that Kenny is doing great!
Hi! Anybody have any further info on this? Medicare in CA will cover liver transplant for CC, but Medicare in Indiana won't. WTH???
You are spending precious time with your sister that you will never forget. Even though it is hard, you will treasure this time when you look back on it because you gave your sister your all. Everything you said, did and felt was/is pure love and there is nothing more precious than that. You are a wonderful sister to your wonderful sister. You and your family are in my prayers.
I'm so sorry about your friend. You are indeed a special person to be able to help her through this journey--she is very blessed to have you. Prayers for you and Bonnie.
Congratulations to you and your Mom!! I love hearing success stories!!
Thank you for sharing your story, Virginia! It's great to hear a sucess story!
I am so very sorry. My thoughts and prayers are with you.
That is so wonderful to hear! Your Mom is amazing!
Physical Therapy helped my brother so much after radiation and chemo. He lost so much muscle mass and energy during chemo. But since he started PT, he's been getting out and about and is feeling so much better.
Sending positive thoughts your way!
Just my opinion, of course, but I think if you stay home for classes, you won't be able to concentrate anyway--you'll be worrying and wondering what's going on. Personally, I would feel better being there in person. Make the decision that feels right in your heart.
Prayers for you and your Mom.
He's doing well, thank you! He's half way through his chemo and tolerating it well (he just gets very tired). He's maintaining his weight and his levels are good (white count goes down after chemo, of course). He's having his first follow-up PET scan today, so we'll know how things are going in a couple of days. He finally made it onto the liver transplant list, but he has a low score because he has a funky node. The radiation oncologist thinks it's a reaction to the radiation/chemo and the chemo oncologist thinks it's not a reaction and wants a biopsy. We'll find out who is right when he gets the results to the PET scan back. If his node is gone or smaller, his liver transplant points will increase to 26 (I believe that's correct). He will then start listing at other hospitals in addition UCLA where he is listed now. We're staying positive and doing what we have to do to fight this menace!
I don't know how you could do it being awake! My brother has always been sedated.
My brother is having his fifth ERCP next week. From his experiences, the Doctor who does the stent placement makes all the difference! His local doctor could only fit one stent in and also caused him to get pancreatitis after the first procedure. The doctor at UCLA was able to fit two stents in with no problems and he felt great for almost two months. Because of a mix-up with scheduling, he went back to his local doctor to have the stents replaced. The local doctor assured him that if he had any trouble, he would contact the Dr at UCLA. Well, he could only get one stent in and he didn't call for help. My brother got yellower and sicker until he could get an appointment with the Doctor at UCLA, who put two stents in with no problems. He also said that stents have a limited "stent life" when one is going through radiation and/or chemo. He advised my brother to have his stents replaced (at UCLA!) every six weeks. I believe that his stents are plastic because they are wider than the metal ones, but I will double-check that. Keeping you and your brother in my thoughts, Peggy! Sis
Thank you all for your support! I'll post as soon as we get the final word from the liver transplant committee.
Thanks, Kris and Marion!
Resection is not an option
Hello, everyone. I've been reading through the discussion boards for a while now, but I need to post so I don't get kicked out of the group! Lot's of good info here and, most importantly, lots of support!! My brother was diagnosed at the beginning of summer with bile duct cancer. The cancer is at the top of the bile duct and a little ways into the branches in the liver. He is receiving his care at UCLA. He has gone through the liver transplant assessment, but hasn't heard the final word yet as to if he will be added to the transplant list. We're hoping to hear today. He already finished his radiation treatment (SBRT ) and will begin chemo this week. The diagnosis was quite a shock because he's always been so healthy. In fact now, he looks healthier than he has in a long time! We have a very close family, but unfortunately, we all live far away from one another. We are taking turns flying out to stay with my brother. I wish we could be with him througout the whole time that he has to go through this. Anyway, thanks in advance for your support and I'm so glad this forum exists (though I wish it didn't have to exist...)
Posts found: 20
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