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Janet-Having CC is so overwhelming, unlike other cancers there are really only handfull of doctors who really know about it. Mayo should be a good option for the best care, but if you don’t like what you are hearing you need another opinion. Second or third opinions will only validate what you already know or it could give you more choices with a better outcome. Dr. Chapman and Dr. Kato are two doctors that get a lot of press here. Dr. Chapman has a reputation for doing phone consultations, so you might want to call his office (I have his number on speed dial!!). I am not sure about medicare and transplants, but I know there were senior citizens on the transplant floor. I know that Arizona had some bad press about paying for transplants???
It has been 3 years since the “day time stood still” and me and my family still try to remember all the info we heard that day. You will learn to say “stop” and start writing down or recording it all, because it is way to traumatic and overwhelming to take in.
Lots and lots of prayers-CathyCathy, I think I read your post about a transplant with portal vein involvement. The surgeon named Dr. Lee at the Mayo said once cancer invades the portal vein that they can never be sure it is all out. He is the one that told us to make the most of each day we have. I don’t remember much else he said because I just fell apart. I had thought the reason for the appointment was to discuss alternatives. Dr. Lee also said my husband looked really good.
Pete had a catscan after 6 weeks on the trial. They couldn’t get a good reading because his kidney functions weren’t up to a certain level to put somthing in his cocktail before chemo. So in another 3 weeks he will have a MRI to see what the chemo has done. Right now they are guessing the trial did some good because all his numbers look so good.
I think I read somewhere that Medicare doesn’t cover transplants for people that have cc. Does anyone know about that?
Janet-Welcome and sorry you had to find us. I am a CC survivor 2 years cancer free, because of a transplant. There isn’t anything right or wrong that you can post on this site, everyone here has the same problem and we are all looking for HOPE, understanding, and to information.
I too almost bled to death because of radiation damage to my hepatic artery, I had 14 units of blood and 24 hours to live with out a second transplant. I find it interesting you don’t qualify for a transplant because of the portal vein, my tumor involved the portal vien and was inoperable because of that, so my only HOPE was a transplant. My miracle worker was Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Barnes and the Mayo were the only one with this trial back in 2008, so you are , in a good CC place, but we are all firm believers in second, third… opinions as Lainy said.
You can read my story at thetelegraph.com under christmas miracle. It is full of HOPE!! Please email if I can help more.
Keep posting you are among family.
Lots of prayers-CathyDear Janet, welcome to our wonderful family of the most courageous and caring people the world over. I am so glad you came out of ‘lurkage’ as this is the right and best place to be…if you have too!
First of all we do not listen to time tables as we were not born with expiration dates on the bottom of our feet. Next we are big believers in 2nd and 3rd opinions. And in between we try to take each day at a time. We have a search button at the top of the page and if you type in something you are questioning like ‘esophagus’ posts will come up with that issue.
My husband, Teddy, was a very strong man and the most important thing to him was that I stay strong. I felt if I cried in front of him it would break him down as well. I used to go for short drives alone, and that is when I let loose.
Honestly, once a game plan is in place you do relax a little as something you feel is productive is being done.
Please don’t make time limits like 2 years, try really hard to take each day at a time. Know that we are all here for you and please keep us posted and visit as much as you like.Dear Janet,
Welcome to the site. I am sorry to hear your husband was diagnosed with CC. I have read about others with bleeding in their esophagus. I am sure Marion, Lainy, Gavin, or Percy, our moderators, will be able to give you more information or direct you in the right path. I understand that you are feeling scared and overwhelmed. I, too have felt that way. My daughter, Lauren has CC. She is only 25. My daughter is definitely the strong one in our family. My husband and I have breakdowns frequently. It is just so heartbreaking. I hope you continue to visit this site. You did an excellent job writing your first post! There are so many caring, supportive individuals here. Take care and God bless you, your husband, and family. If you would care to read my blog I write for Lauren you can hit the word “website” in green next to my post.
Love, -Pam
Hello, my name is Janet and my husband who is 66 years old has been diagnosed with cc. At the end of August my husband threw up lots of blood and fainted in our bathroom. I called 911. At the hospital they put bands on the holes in his asophogus and kept him there a week. After many test we were told he had a 9 cm mass on his liver in addition to cirrhosis of the liver. My husband has never had hepititus and the only drinking he did was in college. Go figure. An oncologist referred my husband to the Mayo Clinic in Jacksonville.
The doctors at the Mayo diagnosed him with intrahepatic cc and offerred to put my husband on a trial. The trial was a combination of gem/cis and the pill everolimus that he was to take 3 days a week. Yesterday he was taken off the trial because his plalets fell below a certain number 2 times. Yesterday he was given a blood transfusion instead of chemo.
I would like to share more, but this is my first post and I really don’t know if I am doing this right. I have lurked all over this sight for days, but didn’t see any mention of bleeding of the esophogus due to portal vein blockage. That night my husband lost half his blood and the doctor told me he would have died if he had been brought in an hour or two later. Yesterday at the Mayo we were told he may have a year to live. I am not handling this well at all. I have to be the strong one, and I don’t know how to get there. Right now he is the strong one. By the way he looks and feels rather good since he hasn’t had chemo in 2 weeks.
Conclusion resection isn’t in the cards because of the scarred liver. Transplant in out of the question because of the portal vein involvement. The idea is to use chemo and radiation through the leg until it doesn’t work anymore. My husband was a high school teacher and football, baseball coach. He even played footall in college and doesn’t give up easily and can handle lots of pain. Our goal is to prove the doctors wrong and live for at least another 2 years.
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