Dad Diagnosed with Advanced HCC

My 69 year father was diagnosed on Thursday with nonresectable advanced hepatacellular carcinoma.  He is not a candidate for surgery or radiation due to the metastisis to adrenal and lymph nodes.  Doctors at the Cleveland Clinic said Nexavar is his only option.  My parents were scheduled to go to Rome in 3 weeks.  Should he begin medicine and still go or wait to start until they return.  Does anyone know of any clinical trials that may offer better results than Nexavar.  Our family is devastated by this news and could benefit from words of wisdom from people living through this horrible nightmare.  My dad is also looking for hope....does anyone know of people living more than a year with this advanced liver cancer.  He just needs to know that some people have beaten the odds...I know if he hears this it will help him.  Thank you so much. 

Hi Buckeye40,

 I have HCC and have been fighting it for a little over 2 years.  I have received treatments at Shands hospital at the University of Florida for a little over a year.  They've done a grreat job as far as I'm concerned.  I've had the best luck with embolizations, but with your fathers cancer being as advanced as it is I don't know that that would be an option.  I did not have good luck with Nexavar, but that doesn't mean that your father won't.  Have him start using Eucerin on his hands and feet at least a few days before he starts taking the drug.  That will help if he does have the hand and foot skin problems.  Normally it takes several weeks before the symptoms show up.  Talk to your docs about whether he can wait until he gets back from Italy until he takes the Nexavar.  When I took it there were nurses you could call to ask questions because it was still a trial drug.

My main concern, for myself, is to make the most of each and every day.  If I don't have luck with the newest drug I'm testing, Tarceva, I'll stop taking it and enjoy what time I have.  I'm 54 and my first grandchild is just over a year old.  This is not the time that I want to leave this life, but I trust in God's judgement more than mine.  If you're Catholic, do a search on Father Seelos at bing.com look for news articles.  I don't know if I should talk about that kind of thing here, but I found it very helpful.

I wish you and your family the best,

Bob

Hi Buckeye40:

My husband was diagnosed with Stage IV HCC on 6/27/08 with a portal vein thrombosis.  We were given a very bleak prognosis of less than 30 days.  He began Nexavar on 7/10/08 and has had great results.  He feels good and does everything he wants to do.  If you met him, you would never know he is battling liver cancer and he has only been hospitalized once in 14 months and that was a very brief stay.  Otherwise, he sees his doctor every three months for a check-up.  He is following a nutritional regime which we believe is helping him tremendously. We would be more than willing to answer any questions you have about his diagnosis, treatment or nutritional regime.

I know firsthand what you are going through and want you to know I will be thinking of you and your family as you all make your way through this diagnosis.

If you have any questions, you can contact us at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

 

 

On 9/7/2009 buckeyes40 wrote:

My 69 year father was diagnosed on Thursday with nonresectable advanced hepatacellular carcinoma.  He is not a candidate for surgery or radiation due to the metastisis to adrenal and lymph nodes.  Doctors at the Cleveland Clinic said Nexavar is his only option.  My parents were scheduled to go to Rome in 3 weeks.  Should he begin medicine and still go or wait to start until they return.  Does anyone know of any clinical trials that may offer better results than Nexavar.  Our family is devastated by this news and could benefit from words of wisdom from people living through this horrible nightmare.  My dad is also looking for hope....does anyone know of people living more than a year with this advanced liver cancer.  He just needs to know that some people have beaten the odds...I know if he hears this it will help him.  Thank you so much. 

Hi, 

My husband was diagnosed with Advance HCC a year ago, just like your Dad.  He is 57 years old.  After trying Nexavar and 2 Clincal Trial drugs throught the City of Hope, nothing worked.  Earlier this year we started going to an Acupuncturist who treats him once a week, put him on Herbal meds and he is feeling great.  We check in with the Oncologist every 2 months.  At the last appointment (late July) he said that my husband looks healthier than he does, and can't believe how slow the cancer cells are growing.  Most of his patients succumb to the disease quickly.  He, and the Oncologist at City of Hope said they would let us know when another clinical trial becomes available but to remember that the chemo drugs put toxins in your body.  Cancer cells feed off of acid, toxins, and any chemicals that are put in our food, so we feel we are on the right path.  We have learned more about this cancer from the Acupunturist than we did from the Oncologists.

My husband has a great attitude and is very stubborn.  He WILL NOT let this horrible disease get the better of him.  You would never know he even had HCC if you saw him. 

If you want more info, please please let me know - I will be more than happy to share our experiences for the last year - we have gained a lot of knowledge.

Our thoughts and prayers are with you.

Jane  ;o)

 

On 9/10/2009 kajunkrewzers wrote:

Hi Buckeye40:

My husband was diagnosed with Stage IV HCC on 6/27/08 with a portal vein thrombosis.  We were given a very bleak prognosis of less than 30 days.  He began Nexavar on 7/10/08 and has had great results.  He feels good and does everything he wants to do.  If you met him, you would never know he is battling liver cancer and he has only been hospitalized once in 14 months and that was a very brief stay.  Otherwise, he sees his doctor every three months for a check-up.  He is following a nutritional regime which we believe is helping him tremendously. We would be more than willing to answer any questions you have about his diagnosis, treatment or nutritional regime.

I know firsthand what you are going through and want you to know I will be thinking of you and your family as you all make your way through this diagnosis.

If you have any questions, you can contact us at

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

 

I was wondering if you would share your nutritional regime with me? I had surgery this past June to remove my left liver lobe, gallbladder and 5 lymph nodes...stage 2 cholangiocarcinoma. I've had one month of chemo with 5 more to go....can use all the help I can get!!  Thank you!!

I know everyone has a different reaction to the Nexavar but it helped my Dad prolong his life and have a much better quality of life.  Have your dad moisture his hands and feet at least two times a day.  My Dad also had a dry skin on his scalp.Good Luck and my prayers are with you all.

Thank you for your messages.  My dad has been on the Nexavar since last Wednesday and things were going relatively well (constipation the biggest complaint) until this morning when he started with dark, tarry stools and complaining of pain and dizziness.  He went to the ER where they performed an endoscopy and it revealed an esophagel varices.  Doctor was able to put rubber bands around the veins and he is in the intensive care unit tonight. Has anyone had experience with these varices.....will they come back... is this just a bump on the road or is it a sign of end stage.  After reading posts of people doing well for 6 months, 8 months, even years.....we were starting to smile again.  Dad was just diagnosed 2 weeks ago....their Rome trip is in 2 weeks.  Can anyone offer any hope or advise.

 

 

On 9/17/2009 buckeyes40 wrote:

Thank you for your messages.  My dad has been on the Nexavar since last Wednesday and things were going relatively well (constipation the biggest complaint) until this morning when he started with dark, tarry stools and complaining of pain and dizziness.  He went to the ER where they performed an endoscopy and it revealed an esophagel varices.  Doctor was able to put rubber bands around the veins and he is in the intensive care unit tonight. Has anyone had experience with these varices.....will they come back... is this just a bump on the road or is it a sign of end stage.  After reading posts of people doing well for 6 months, 8 months, even years.....we were starting to smile again.  Dad was just diagnosed 2 weeks ago....their Rome trip is in 2 weeks.  Can anyone offer any hope or advise.

 

I have the var ices and liver cancer. One of the var ices burst one year ago and that is when I found out about my liver cancer. I have not had another incident since then. I take medication to keep my pulse low..in the low 60s and try not to exert myself to raise my blood pressure or pulse. They found that some of te cancer is in my portal veins and this could have caused the varises. I did have 2 chemoembolisations and that seems to have slowed down the tumors in my liver dramatically. I  am now on nexovar and am tolerating it well. I don't think I will qualify for more chemo treatments because my portal vein is completely blocked. I do have collateral veins that have taken over. Anyway v arises are treatable with banding. It can be frightening at the time but it is treatable. The longer you can find something to slow the CA down the longer you will live. I was given about 2 months before treatment and it has been over 1 year now. The whole thing can be frightening to start but the more knowledge you gain the more you can feel in contro. the internet is great. God Bless  Steve

 

Hi, my husband was diagnosed also June 2008 with HCC.  He had been receiving phlebotomy for many years for a genetic disorder called hemachromatosis which caused cirrhosis which then led to the liver cancer.  He was started on Nexavar and has been on it since.  He has not experienced the hand-foot syndrome, mostly diarrhea has been a big issue and he had to be put on coumadin due to a deep vein thrombosis which led to a GI bleed and anemia since this past March 09 which we are still trying to locate the bleeding source.  Overall, he has done well on the Nexavar but they do tell us that at some point it may quit working.  I did happen upon a diet therapy called CAAT and was wondering if anyone had experience with that and you speak of a nutritional regime and I am wondering what that would be.  Thanks for your reply and time.

I am so happy to read that Nexavar actually helps people. My dad (62 years old) was diagnosed with advanced HCC a month ago (mid October 09) and has been on Nexavar for 5 days now. Side effects have not shown up yet but over this last month he has become so weak due to the disease. Will he be able to stand up on his feet again, at least to enjoy the time we are spending togethe?

Thank you all and wish you patience and courage...

Lina from Greece