kthembree

Hi Fran

All of my thoughts are with you. I went through the same thing this time last year with my husband Ken and I can honestly say I know what you are going through. Ken was given 6 mo and made it 4. He made it through Christmas (with a strength I wish I had) and he left us on Dec 27th.
Cherish every moment you have with him!

Terri

Charlene,
You definitely need to apply for Social Security Disability- not the Supplemental Income.

Charlene,
I would suggest that you apply for Social Security Disability. If you go to there website, they have “liver cancer” listed as a diagnosis that guarantees coverage. Ken was able to get it and it saved us from losing everything!
Terri

I am sad to hear all of this. Ken was given 6 months to live at the end of Aug and was with us for 4 months. He went directly to hospice from the last visit at Stanford. Hospice was wonderful!!! Thank God there are people out there who love to do that. The difference with Home Care and Hospice is that hospice basically makes you comfortable and does no life lengthing care. Therefore, there is no TPN- which is Total Parenteral Nutrition- food source through an IV. They brought a hospital bed which made a world of difference in Ken’s comfort for sleeping. They have massage therapists, spiritual therapists, CNA’s to help with bathing, foot massages, etc. ( I am a nurse so I preferred to do everything myself but it is a VERY physical and emotionally taxing job. ) One thing I was thankful for is that towards the end, Ken had such a buildup of ammonia in his brain, he wasn’t feeling any pain. It was sad because he wasn’t really with us. He was able to turn his head towards me whenever myself or my daughters would enter or leave the room. The last month I was able to take off of work and be with him, I even slept in that twin hospital bed with him til the end. I am glad I did that because I was with him when he passed away.

Sorry, if I am rambling on, but I try to type through the tears.

Hi cmsmith,

My husband had his resection at Stanford by Dr Esquivel (head of the liver transplant team). When they went in, they did not expect to see what they found. He had a softball size tumor with 2 daughter tumors. Dr. Esquivel came out after about 7 hours and told me that they almost closed Ken up and let him go but because of his age, 45 years, they decided to go ahead with it. I would absolutely recommend Stanford as a place to go for anyone needing a specialist.

Terri

HI Nancy

My husband Ken(45) was diagnosed with intrahepatic CC in June of 2005 after all of the various testing. He had a liver resection at Stanford due to the fact that we live in Reno, NV and no one here would touch him. They went in and were surprised- he had a softball sized tumor with two “daughter” tumors. After about 8 hours of surgery, the doc came out to tell us that they had almost closed him up and sent him home but discussions re: his age led the team to go ahead with the surgery. Ultimately, it was an 80% resection. Recovery went well- he was very healthy otherwise. He was at Stanford for 7 days. The margins were clear and there was no node involvement. The oncologists at Stanford conferred with the oncologist here and decided to do 6 mo of Gemzar because that is what is used for Pancreatic CA and that was the closest match they could find. 6 mo of chemo was tolerated fairly well by Ken. He was not able to work and Social Security disability was actually wonderful to us!!! Surprise! The unfortunate thing for alot of people, I believe, is that there are no advocates for pt’s in my husbands position as far as financial, emotional, support. I recommend everyone with CA to go to Social Security!!!

Ken had a follow up CT right before his last chemo tx which showed that the CA had returned. The docs here spoke to the docs at Stanford and decided he would be a candidate for sir-spheres. It, too, was tolerated fairly well by Ken. His 6 week check up showed no recurrence. the next 6 week check up showed that the CA had returned in another spot. They could not radiate his liver anymore. So, we do know that it zapped the CA it targeted which I believe was some great news for the docs research. They told Ken there was nothing else they could do and gave him <6mo to live. He was with us for 4 mo before the CC finally got him. We miss him dearly every single minute!

Best of luck for you and your loved one.

Sincerely,
Terri

PS- The radiation Oncologist that we saw at Stanford- Dr Karyn Goodman was absolutely wonderful!!!! She has moved to MD Anderson.

Hi Robyn,

I know you asked if anyone has experienced large liver resection and I can tell you my husbands experience but unfortunately, it was not good in the end. Ken had been having some slight abd discomfort- that he had ever mentioned to me. One morning he woke with severe Left sided abd pain. I assumed it was a kidney stone because he had one in the past. The doctor ordered an Ultrasound. The left side was clean but very suspicious looking on the right. CT, PET scans,bloodwork all followed. The surgeon here in Reno was not about to touch Ken so we were referred to Dr Esquivel at Stanford. Biopsy was done- confirmed CC. Resection was scheduled in 2 weeks- He was in surgery for over 8 hours. Dr came out afterwards to inform us that the team had considered just closing Ken up and letting him go home but they took a chance because of his age (46). He had a softball size tumor that was in his liver and gallbladder and what he called 2 “daughter” tumors. Recovery went very well. They didn’t know what to do with him after that. Trial of Gemzar for 6 months- tolerated that pretty well. Had afollow up CT before last chemo dose and found the CC had returned. Ken decided the chemo was not a choice for him to continue. The docs at Stanford decided to try thera-spheres. Went great- 6 week follow up CLEAR! Very hopeful! 12 week follow up- still clear where the tumors were radiated but new ones had formed. They were unable to radiate any more of his liver. Told us Ken had less than 6 months. It was only 4 months but Ken was able to grant a wish for a patient of Make-A-Wish. A 9 yr old named Jared had leukemia and always wanted to go fishing on a big boat. So, Ken with his CA and Jared with his had a week up at Eagle Lake and had a blast! Ken passed away 12/27/06 and Jared is in remission!

My best wishes go out to you and your family.
Terri