kathyj
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My tumor was in the bile duct and wrapped around it on the outside, also around the portal vein. They had to take three tries to get enough cells to make an accurate diagnosis. I now have a 2 cm mass located near the portal vein between the liver and the stomach that they can’t get at with a needle to do a biopsy after two attempts so we are watching it. It was discovered at the end of March, I’ll return to Mayo June 12 to see if it has grown so they can try again to biopsy it, or if it is the same size which would be a good thing. Good luck with your dad. Keep trying to get him seen earlier. My physician (gastroenterologist) make the referral for me to Virginia Mason and I was there being seen as a patient in two days. Dr. David Patterson is well known on the west coast for his abilities, especially diagnosis of cholangiocarcinoma. They were very efficient. They made the referral to Mayo for me and encouraged me to go that route. I was diagnosed formally on April 15, 2005, and had my liver transplant at Mayo on November 16, 2005, just seven fast months apart. Good luck!
Kathy J
OlympiaHi Amilcar,
I was diagnosed at Virginia Mason Hospital by Dr. David Patterson in April, 2005, and was referred on to the Mayo Clinic in Rochester for a liver transplant. My cholangiocarcinoma was contained to my bile ducts, though. Dr. Patterson placed stents in my bile ducts to allow the bile to drain properly. Has anyone mentioned doing that? It took care of my jaundice right away. Good luck to you. If you have any questions, don’t hesitate to ask.
Kathy J
Olympia, WAI’ve had experience with the radiation but it was in preparation for a liver transplant. I am a paitient at the Mayo Clinic in Rochester. I was diagnosed with cholangiocarcinoma (Klatskin tumor) in April, 2005. Last summer I received two doses of radiation daily for 15 days, followed by implanting the radioactive seeds directly on the Klatskin tumor which was wrapped around the portal vein, too. The radiation greatly shrunk the tumor but also caused some scaring and damage to my stomach. We didn’t discover the damage to the stomach until May, 2006. I had the transplant in November. My hemoglobin kept falling down, when it gets to 8 or below then they want to give me transfusions, I’ve received four transfusions of 2 units each since the end of March. This last time I discovered blood in the toilet after a bowel movement so went to the emergency room here in Olympia and they diagnosed the damage to my stomach, blood was seeping from blood vessels that had been damaged during the radiation. I then was sent to Virginia Mason Clinic in Seattle to have the area laser cauteized. I will have another blood test tomorrow to see if the hemoglobin level has stayed up this time, it was 11.3 last Tuesday, which is good for me.
Perhaps you should contact the Mayo Clinic to see if anything can be done for your mother, perhaps a liver transplant although they don’t usually do it if the cancer has metastisized. I, too, had the metalic stents placed in my bile ducts after the tumor was discovered April, 2005. They functioned well and were removed during the transplant in November, 2005. They did leave 1/2 of a stent that was so far into the pancreas that they didn’t feel comfortable removing it.
The Mayo Clinic is the only facility in the US that is authorized to use a cadaver liver for a transplant into a paitient who has cholangiocarcinoma (Klatskin tumor). Go to their website and check it out, have your physician call and see if they will let your mother come for an evaluation to see if she qualifies for a transplant. I was fortunate, my daughter donated her right lobe of her liver to me so I didn’t have to wait for a cadaver liver. Not everyone is so fortunate, though.
Good luck with your physicians and your mother’s health. You feel so alone out there but remember there are many others who have had similar problems. I feel so confident that if anyone can resolve my problems, that the Mayo Clinic is my best shot at long term survival.
Let me know if I can help with any of your questions.
Kathy
Olympia WA
Liver Transplant 11/16/05Congratulaions on your speedy recovery from the transplant! Way to go!
I’ll return to Rochester on June 12th for appointments, we hope to be able to return home on the evening of the 14th. It looks like we will miss meeting each other.
I’ve been having some problems with my hemoglobin, I’ve had to have two blood transfusions, one in March, and the other one yesterday. When the level goes down to 8.0 then Mayo wants me to have the transfusions. I do feel a lot better after I receive the red blood cells but wish the iron pills I’m taking would help more to raise my hemoglobin levels. Mayo will do a bone scan in June to see if there is a problem with my bone marrow. If there is, I don’t know, yet, what the treatment will be for that. Otherwise I feel pretty well, I do have some back pain, especially at night when I’m laying down, but it seems to go away during the night and is gone by morning. I think that’s strange but something I can live with as long as it doesn’t get any worse. When I return to Mayo in June they will also do more blood tests, a CT scan and an ultrasound to see if the mass they discovered in March has grown or stayed the same size and to see if my CA-19 level has changed.
Yes, we did tour the transplant house. It’s a great facility but we have a motor home and prefer our privacy over the communal living arrangement at the Gift of Life house. We found many other Mayo patients at the RV park we stayed in – Autumn Woods – and were able to meet new friends with whom we have stayed in contact. We like staying at either the Kahler Inn or the Brentwood Inn for the convenience of closeness to the clinic when we are there for a short stay. We’ve taken the motor home there twice, each time we were there for a two month stay. Do you live near Rochester? We fly into Minneapolis, rent a car, and drive down to Rochester.
Thanks for responding and maybe we’ll meet sometime in our course of follow-up appointments. Again, congratulations on your successful transplant! We are so pleased that we went to Mayo for our treatment and feel very confident that they will find a cure for most problems, if you go to them before it’s too late for treatment.
Kathy J
Olympia, WAI had brachytherapy on my bile duct cancer at the Mayo Clinic in Rochester, Minnesota, after fifteen days of twice daily radiation treatments. It shrank the tumor. This was followed by chemotherapy (Xeloda pills) until I was able to receive a liver transplant. You might go to the Mayo Clinic webpage: http://www.mayoclinic.org/rochester/alphalist-ll.html. Click on liver cancer, liver disease, or liver transplant. I’ve found the staff at Mayo to be very thorough and helpful in their approach to curing the cancer.
Kathy J
Olympia, WAGood Luck mnauss! I had my transplant at Mayo in Rochester on November 16, 2005. I’m feeling fine now, but my latest CT scan in March showed a 2 cm mass between the liver and the stomach, snuggled up next to the portal vein. The doctors want me to wait two to three months and return for another round of CT scan, ultrasound, and bone scan plus the blood draw to see if they can detemine what’s going on with my high CA 19-9 score of 7400+. They think the cancer may have spread but need a biopsy to confirm it. They were unable to biopsy the mass in March. We’ll return June 12th. We live in Olympia, WA so it isn’t easy to travel back and forth a lot. We fly when it’s a short stay, otherwise we’ve taken our motor home and stayed for two months at a time.
Congratulations on having your wife be compatible with you so that she can share her liver. Our daughter gave me her right lobe, she kept her left lobe and some of the bile ducts. My liver is doing well and the bile ducts are too.
Mayo is an amazing place and I’m glad we were directed there by the doctors in Seattle. You’re in excellent hands there, the doctors and staff are so caring it is very comforting.
Let us know when you get the transplant scheduled. Maybe we’ll be there when the big day arrives and we could meet each other.
KathyJ
