kthembree
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Hi LD,
My husband Ken(46) was diagnosed in May of 2005 and passed away Dec 27th 2007. It was a very trying ordeal on the whole family -liver resection, chemo , therasphere and then hospice. I am an RN and one of the doctors I work with said that hepatic encephalopathy was not a “bad way to go.” They usually have very little pain but the toxins do play tricks on their minds. The best way for my family to deal with Ken’s psyche was to just agree with everything he wanted or said and let him do as he wanted as long as safety was not a concern. Ken was very much a huge source of laughter in our life and so some of the strange things he said and did were keeping us laughing. I should have documented all of the funny things he said. We miss him dearly and it is such a hard time but I hope my experience can help you.
Sincerely,
TerriThanks Betty. Even though Ken passed away in Dec, I know that this will always be part of my life and I continue to check this site everyday. This is a great way for people to learn new things and hopefully make big strides in dealing with this cancer.
TerriMy husband Ken passed away in Dec 06 from CC. I am a Pediatric
RN and so I deal with insurances all the time. Fortunately, we had great insurances for Ken- Cigna and HHP. There were lots of times during Ken’s treatments that I felt we were out in “space” without any help. Besides the fact that he had a rare cancer that no one appears to know how to treat, I felt like we should have had a social worker on his case.
We were not introduced to a social worker until Ken was placed in Hospice.There was nobody to help us if we had questions about finances, insurances, etc. I found out on a fluke that with the diagnosis of CC you are eligible for Social Security Disability. You do have a 6 mo waiting period but it sure helped us when Ken was no longer able to work. Also, if you are on SS Disability for 2 yrs, you are automatically signed up for Medicare. Ken only lived with his disease for 18 months but I did tell a friend about the Social Security- his wife has Colon Cancer- and they were able to collect it retroactive to her disability date. I think the Social Security is a great help. If you have minor children, you also get SS Disability per month for them.As far as the insurance goes, unfortunately, what we do as health care professionals is dictated by them. Although, There is always a chance to fight a denial. The first step would be is to have your Doctor in Oregon write a letter to the ins co stating that the required treatment is only available in certain states and Stanford is the closest center for you.
Dr Karyn Goodman is a wonderful doctor! She did the Sirspheres treatment on Ken which worked. Unfortunately, at our 3 mo recheck, his tumors were back on the other lobe. He chose at that point not to continue with any treatment,was given less than 6months and had a nice quality of life for 4 months.
I have this horrible pain in my heart from missing him but I know he is in a great place!
Terri Hembree
To the Clements Family,
I am really sorry for your loss. I just lost Ken 12/27/2006 and I don’t know what else to say. So far, I have not heard any words from anyone else that has made an impact on my feelings… I do really appreciate this website because I feel we are the only ones “in this same boat.”
Sincerely,
Terri HembreeHi Kelli,
I wanted to let you know that my husband had recurrent unresectable cc after 7 mo of Gemzar treatment. The doctor at Stanford said this time they couldn’t operate so he was referred to the Cyberknife Tx Center. His procedure was done 3 mo ago, 6 wks ago his PET scan was clear and we actually follow up on Mon at Stanford with his 3 mo PEt scan.
Cyberknife might be something you could consult about. Dr Goodman has been great!
TerriHi Kathy Sue
I have not heard of TheraSphere radiation but my husband did have a Cyberknife treatment 6 weeks ago at Stanford for his recurrent unresectable CC. His follow up PET scan was clear and the next scan is in another 6 weeks.
Terri
Ken had a softball size tumor that had incorporated his gallbladder so it was also removed with the resection. No lymph node involvement or spread to any other organs. He was told there was no hope with anymore chemo so… No other treatments are pending, if/when it comes back, they may be able to do Cyberknife again.
