Told today that my dad is in end-state
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Michael….I am crossing my fingers for the antibiotics to kick in and for the external drain to bring relief to your Dad.
A tidal wave of good wishes are coming your way,
Marionhello Michael,
I’m sorry to hear what you are going through.
I would recommend Dr. William Jarnigan at Sloan. He is a liver surgeon with experience in CC.
Best of luck.
Ashley from CTMichael – I feel your pain so much. We lost our Dad on 5/27/10 to CC, and the speed at which things fell apart was one of the toughest things to handle. I know how you feel when the doctors seem to have given up. I don’t know enough to give you any suggestions about further treatment, but if you and your family are ready to talk with the hospital social worker, you may want to consider in-patient hospice. It gave us such special time with our Dad, when we knew it was the end, to focus entirely on an easy, hopefully painless transition for Dad. There are still times when I wonder if we “gave up” too easily, but most of the time, I know that God wanted him in heaven. Dad was diagnosed on 12/23/09 and was pretty much self-sufficient and independent (certainly not too sick) until 5/13/10 when he started experiencing some of the same symptoms you describe. It was a whirlwind 14 days, and awful decisions had to be made, but my Dad knew his end was coming as a result of the disease, and he wanted to go with dignity and comforting last moments with his family. Thank God, we were able to have that. My Dad was only 73 years young. I miss him everyday, but I know he is in my life everyday, too, as I can see evidence of it in things that happen. The torture of this disease, I think, is in needing to accept it. I pray for you and your family, as I know this is extremely difficult.
Donna
you can try Dr. Zoe Golberg at Memorial Sloan Kettering, I would suggest hopkins 410-955-5000 call first thing in the morning. They are wonderful people.
My thoughts and prayers are with you, as well cancer centers of america in phili is awesome!
Sending many hugs your way.
roni dinkesTest results have come back that they haven’t found a tumor. Was told my dad James likely has a difuse spreading of the cancer within his liver and bile ducts. His biliruben level is 6.5. His CA 19-9 is 246. He is sleeping all the time. His urine is a dark brownish / redish color. His stomach keeps filling up with fluid. They drained 10 pounds / 4.5 liters the other day and is scheduled to be drained again tomorrow. We are told he still has an infection and he is being pumped with antibiotics. He had an MRI but could not hold his breath for 20 seconds so the results were not valid.
Any advice would be greatly appreciated. Is it necessary to hold your breadth for 20 seconds or is it more they don’t want you to move for 20 seconds. They had my dad in the MRI for 90 plus minutes but evidently my dad did not cooperate. I wonder if he would do better in an Open MRI but he is so week.
The doctors are going to drain him tomorrow and maybe put in an external drain. I asked about a stint but they said there is nothing to stint. An ERCP is out because they did something called a Y Roo reconstruction when they removed my dad’s tumor October 14, 2009.
The doctors have basically given up hope. They can’t see a tumor but they keep referring to his cancer. They drained him twice and found no cancer cells in the fluid.
My dad has been on a downward spiral over the last 14 days.
Does anyone have a contact name for a CC specialits at Sloan Kettering in New York or any other doctors in PA, NJ, NY, or DE.
He is having problems breathing and the doctor asked me and my mom what they should do if he codes tonight. I am so far from being ready! My kids are going to be devistated! I am going to be devistated.
Again, any and all feedback would be greatly appreciated. Thank you.
Michael
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