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Dad's HCC reoccurred after a transplant

sonnysekhon
Posts: 2
Joined: Aug 2011

Hi everyone,

My Dad (55) was diagnosed with HCC w/ cirrhosis in March 2010 and we had the transplant done in April 2010. I (26 male) was the donor. They took my entire right lobe and removed all of his liver. Everything went great and we both recovered well, especially him. He has had routine check-ups and tests done ever since.

Unfortunately, he started experiencing pain in his back in July 2011 and it has been confirmed that the HCC has reoccurred with mets to the lungs and bone (destruction of ribs).

The doctor has prescribed Nexavar and said that there is no other alternative. He also said that it won't cure him but simply prolong the inevitable. He gave him 6 months to a year.

I am really scared and sad. I feel so inept for not being able to do anything else for him. He is weak from the meds and never leaves his bed.

What do I have to look forward to? Is there anything else I can do?

Is there anyone with a similar prognosis who defied the stats?

Sonny

Angel322
Posts: 26
Joined: Mar 2011

Sonny,

I am so sorry to hear about your Dad. I can understand what you are going through, my Mother had bile duct cancer. She had surgery and treatments and was doing well, then was burned internally from the radiation and bounced back from that surgery...only for the doctors to tell us they found a spot on her liver one month after the radiation surgery. I was so devastated...and still am everyday of my life. I lost my Mother on Father's day of last year. She was my everything! I'm lost and wonder why her everyday? Why did her life have to be taken away from her and me and my family after all she went through to beat this?

I want to tell you that you have already done so much for your father and it will never be enough to a child. For you to risk your life and give him the right lobe of your liver was the most giving, loving and most courageous thing you could do for him. You're father raised an AMAZING child!! Always, ALWAYS know that...I can only imagine how much your father appreciates all you've done to show how much you love him and what you were willing to go through to help him! The best thing you can do is, what you've been doing, be there for him day and night...a friend of mine has told me about a procedure called TACE, ask his doctor if he is a candidate. Your father has been through so much and so have you. If the doctor feels its not best for your father, make this time all about quality...make each day the BEST!! I'm sure its hard with him not feeling up to getting out of bed but talk with him about everything and anything, don't let any words go left unsaid...bring him his favorite things, play cards, watch your favorite shows...my Mom and I loved to watch the cooking shows together. Take one day at a time. You will both be in my thoughts.

My heart goes out to you and your father.

Angel

sonnysekhon
Posts: 2
Joined: Aug 2011

Thank you for your kind words Angel, I really appreciate it.
I emailed his doctor and asked about TACE? He said it wouldn't help in his case and Sorafenib (Nexavar) was the best possible medication for him.

I am really angry at everyone involved with the follow up treatment and consultation after the transplant.
It was never suggested that his HCC might reoccur and we were told that everything was going to be fine.
I am not a physician but I think that AFP level should have been a part of his routine check-up especially considering that he has had HCC in the past.
Had we found out about this earlier, maybe the tumors would have been controllable and metastatis to secondary organs might have been prevented.

But what's done is done. I am not married but my sister will get married this December. I am glad that he will be with us to see that.
I don't know what else to say, I had so many plans, I had hoped that he would be around to play with his grand-kids.

Hopefully, he responds well to Nexavar and can be with us for a few years.

Sonny

Soosoo
Posts: 27
Joined: Jan 2011

Hi sonnysekhon

I was exactly in your condition. I donated the right lobe of my liver to my mom who was diagnosed with liver cancer in sep/10 we had the surgery in Oct/10.

This disease is a terrible one, my mom's cancer recurred in Jan/11.

Have faith in God, may you find all the strength you need to pass through these difficult times!

SarahD's picture
SarahD
Posts: 140
Joined: Jun 2010

Hi Sonny I know EXACTLY how you feel. My dad was diagnosed in march 2010 he was only 54 and I 25. He did not have hepatitis or ANY pre-existing risk factors just one of the "unluckky" ones. My dad was fortunate enough to a resection of his liver in may 2010 and all of the cancer was removed. His follow up scans in august 2010 revealed disease recurrence in the liver and sept it spread to his lungs. He was put on nexevar and was takken off because of disease progression. This should not be the last treatment option for your dad! my dad has done two other clinical trials since the nexevar,they have not cured him but prolonged his life. He is starting to fail now but i was married in oct 2010 and had my first child may 2011 so I AM greatful for that, pressure the doctors if you are not happy or get another opinion, good luck!

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