Frustrated Daughter
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Laddie….This might be happening partly because of the chemical changes going on inside your Dad’s body. Don’t try to restrain him if he is agitated rather, try to speak to him calmly so that he can re-orientate.
Watch for signs of pain – that can be controlled.
This is a difficult time. Be kind to yourself – you will need your strengths. And, continue to lean on us. We are in this together.
Hugs and love,
MarionLaddie,
You are not a lone. My mother passed March 17th. She was a home, but in hospice none the less. She made it 5 weeks in home hospice. Enjoy your moments, make them count. I am here if you need to talk.
Hugs,
Roni
ronidinkes@yahoo.comThank you all so much for the support.
Dad took a turn this last week and we had to place him in inpatient hospice. This is the hardest thing I have ever had to go through–he is so agitated, constantly wanting to get out of bed, hallucinating and I just wish he could be at peace.
Laddie,
My husband Tom was also 61 when he was diagnosed. He did go through a resection and 18 months later was diagnosed with a new tumor. His then oncologist told us there was nothing more they could do and gave him less than 6 months. We got 2nd, 3rd and 4th opinoins. Everyone agreed that with radiation and chemo he could have a chance. He went through radiation, then started on Xleoda (oral form)…the radiation basically killed that tumor. It was inoperable because of it’s location and it involved the hepatic artery. Later after another tumor (or so they thought) they put him on IV chemo with Gemzar and Cisplation. When another ctscan revealed that it was not a tumor (in the bladder region) they discontinued the chemo. Then later they discovered another tumor in the liver that was growing at an alarming rate. They started him on 5 – FU which is very similar to Xleoda, only in IV form. He did not tolerate this well at all. Tom passed away on 11/20/2011 after his kidneys started shutting down.
Doctors are only ‘practicing’ medicine and many do not know a lot about CC. The fact that one of his oncologist said that they was nothing more they could do and he had less than 6 months is a good indication to me that he did NOT know much about CC. Tom lived another 2 years almost to the day from when that oncologist said those words.
Tell your dad not to give up! Live his life to the fullest! Ask questions and make sure they give you an answer that you can understand! If you feel something is wrong – question it! Build those memories for you never know when a loved one will be called by the Lord.
Hugs,
MargaretLaddie,
As Marion said, seek another opinion because another doctor may have more experience with CC. I am curious as to why they chose Xeloda. My husband started with Folfox, then Gem/Cis and his last chemo was Xeloda. Ask about the Y90 theraspheres radioembolization or chemoembolization. One of these may be an option for your dad. My husband was diagnosed Stage IV ICC in August ’08 and refuses to give up the fight. He had the chemoembolization done four weeks ago and is scheduled to have another one April 17. Never give up hope. PeggyP
Laddie…you are doing everything right by searching out another opinion. It is understandable for your Dad to be discouraged, but he has you fighting for him. Don’t give up and stay hopeful. Please let us know if we can help in any way.
Hugs,
MarionMy father was diagnosed with liver cancer of unknown primary in September 2011 and had 6 rounds of oxaliplatin/gemcitabine with no response. At that point a second biopsy was done and sent for Cancer ID testing which came back as 96% probability of cholangiocarcinoma. We have been told that my father’s liver masses are inoperable and that his only option is palliative chemotherapy with Xeloda but I just can’t believe in my heart that there is nothing else that can be done. My Father is so discouraged that he has no energy to seek a second opinion but I am contacting some surgeons that are known for CCA and will hope for the best.
Thanks for all the encouraging stories, it really does help to know that I am not alone in this struggle.
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