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Gavin, Devon, Tess —
Thanks for the kind words. I have researched the ammonia thing and that sounds possible. Gavin, sounds like it could be worth looking into for your dad too. One of the symptoms is getting days and nights mixed up. I am going to get his ammonia checked this week; the condition is called hepatic encephalopathy and it is reversable, but can be fatal left untreated.
He is 87 yo, so some forgetfulness isn’t out of the ordinary, but it seems to be increasing.
Jan
Deb,
Sorry to hear that you are dealing with so much. It’s hard to balance taking care of someone and the demands of life in general. I know it’s overwhelming.
thoughts and prayers your way,
Jan
Laker,
I think the best reason is that this cancer is so rare that doctors have little understanding of how patients react. My dad is the same age and is 7 months from diagnosis. He was given 6 months to a year. I view the extra time in situations like ours as a gift from God.
Jan
Deb,
I can’t help on this issue specifically, but it never hurts to be proactive. You could ask about a change in his chemo regimen and tell them your suspicions. Is your dad’s doctor familiar with CC and has he administered this before? Also, do they know if the chemo is working?
Sending positive thoughts and prayers your way,
Jan
AS I understand it, nexavar is better for hepatocellular than cholangio, but I certainly could be misinformed. I don’t see the harm in adding Nexavar to that regimen. Others may be able to speak to it side effects, but I think they are minimal compared to other treatments.
Jill,
I feel your frustration. I think BCBS has a standard procedure to deny payment, regardless of pre-authorization. I do think they will eventually pay it. For my Dad, the same thing happened, pre-auth in hand, we had the procedure and they denied one because of medical justification and the other for the need for medical notes.
I think they try to tie you up with red tape so you won’t seek expensive treatment because of the threat of having to pay out of pocket.
One of my dad’s doctor’s offices told me that it was common, but she also said they may threaten to deny it, but they can’t.
Unconscionable, if you ask me.
Thanks, Pam. I guess the experience is universal, but I found your post about driving and crying in my head yesterday. It wasn’t that specifically, but after the b-day and mother’s day was over and I had taken my parents back home and finally hit the bed, I had time to let it overwhelm me again. and it always does.
Deb, Dr Andrew Kennedy in Raleigh, NC is one of the leaders int his therapy. I have heard wonderful things about him. I found his nurse Mary to be most helpful. Unfortunately, it wasn’t in the cards for us.
Thanks Marion and Rob.
My dad’s 87th b-day is Tuesday and we are celebrating this weekend. I expected somber, but it isn’t at all and for that I am thankful.
Hi LB
The folks at CMC are great. My dad has CC and has been to docs in Winston Salem, where he lives and in Charlotte where I live. CMC is fantastic to work with on insurance. Please email me if you have questions. I’d b e happy to chat on the phone too if you’d like.
Good luck with your treatment!
Jan
Carol,
I watched this video on Sunday and shed tears for your family and I thought of you all day.
Please don’t think me inappropriate, but I have to share this. I had no idea that Hayworth posted those online and I am sorry I didn’t. A good friend of mine recently lost her mother and their video had a professional photo of my friend, her sister and their mom circa 1970. It was a needed moment of lightheartedness to get a chuckle at the beehive hair do that my friend was rocking back in the day.
I had hoped to attend Charlie’s service, but my travel to W-S had me there Thursday and today and not on Sunday. As always, you are in my thoughts and prayers,
Jan
Thanks, Rob. No one has mentioned RFA, I think due to tumor size (roughly 10×16). He has decided not to seek treatment. His view is that he probably has about 6 months left and he feels pretty good and doesn’t want to spend that time in and out of doctors’ offices and hospital–it’s a decision I have to accept
Hi Carol,
I was in W-S yesterday and thought about you and Charlie and your kids. I am so sorry for your loss.
Jan
So sorry to hear of your loss. I too believe that our loved ones choose their time to leave.
Thoughts and prayers,
Jan
