Nearing the end??

My dad was diagnosed with advanced HCC 2 months ago today.  He has been on Nexavar for 6 weeks.  Our first scan is on Monday.  But he is not doing well.  He is hardly eating (lost 30 lbs) and his bowels are making him miserable. And it seems like all he is doing is sleeping.  His billirubin is up to 6 now.  His AFP is 7500..was 5000 at diagnosis.  We were hoping that by taking the Nexavar that the progression of the disease would slow.  Do these symptons sound like the medicine is not working, or could they be side effects of the meds.  He did have 2 1/2 pints of fluid drained from his abdomen on Tuesday in the hopes that he might be more comfortable, less light headed,more energy, maybe enen an appetite.  Not the case yet.  Any insight would be helpful.  He is going to waste away if we can't get any nutrition in him.  Our family is devastated....2 1/2 months ago a healthy 69 year old man and today he looks like he is 85.

My husband was diagnosed the advanced HCC 13 months ago.  Nexavar did not work for him, nor did 2 clinical trial chemo drugs.  We have been seeing an Acupuncturist weekly since May and have changed his diet to veggies and fruits, and many herbal meds, and have learned so much from her.  Although our medical insurance does not cover Acupuncture, it IS tax deductible.  My husband feels great (as opposed to being sick on the chemo drugs) !  He had to think about quality -vs- quantity and we all feel he made the right decision.

Please, please let me know if I can help you further.  The holistic and natural way is the ONLY way to go !!!

On Nov 05, 2009 11:01 AM buckeyes40 wrote:

My dad was diagnosed with advanced HCC 2 months ago today.  He has been on Nexavar for 6 weeks.  Our first scan is on Monday.  But he is not doing well.  He is hardly eating (lost 30 lbs) and his bowels are making him miserable. And it seems like all he is doing is sleeping.  His billirubin is up to 6 now.  His AFP is 7500..was 5000 at diagnosis.  We were hoping that by taking the Nexavar that the progression of the disease would slow.  Do these symptons sound like the medicine is not working, or could they be side effects of the meds.  He did have 2 1/2 pints of fluid drained from his abdomen on Tuesday in the hopes that he might be more comfortable, less light headed,more energy, maybe enen an appetite.  Not the case yet.  Any insight would be helpful.  He is going to waste away if we can't get any nutrition in him.  Our family is devastated....2 1/2 months ago a healthy 69 year old man and today he looks like he is 85.

My husband is 65 and also diagnosed with HCC in 6/2008 and was started on Nexavar his AFP started out at 28000 when we found the cancer, he was put on the medicine and the oncologist told us not to be surprised if the number went up the next month, which it did, but after that, it started to drop and continued dropping until it reached 12 earlier this year, it has started to creep back up slowly, thank the Lord.  He also had bowel issues with diarrhea and tiredness, which we just did our best to work through, still has bowel issues, not quite so bad though.  Through all this, my husband promised me that he would fight and stay positive which he has done tremendously.  He also was very active and seemed to age very quickly which was my cue that something was not right when we started seeing doctors.  If this offers you any hope or encouragement as I hope it does, please try to keep your dad positive and if your believe in prayer circles, which we do, offer him in prayer.  Along with this diagnosis, my husband first fell and broke his hip, so he has been dealing with two issues but I am so proud of him for just "hanging in there".

On Nov 11, 2009 5:46 PM smullenix2 wrote:

On Nov 05, 2009 11:01 AM buckeyes40 wrote:

My dad was diagnosed with advanced HCC 2 months ago today.  He has been on Nexavar for 6 weeks.  Our first scan is on Monday.  But he is not doing well.  He is hardly eating (lost 30 lbs) and his bowels are making him miserable. And it seems like all he is doing is sleeping.  His billirubin is up to 6 now.  His AFP is 7500..was 5000 at diagnosis.  We were hoping that by taking the Nexavar that the progression of the disease would slow.  Do these symptons sound like the medicine is not working, or could they be side effects of the meds.  He did have 2 1/2 pints of fluid drained from his abdomen on Tuesday in the hopes that he might be more comfortable, less light headed,more energy, maybe enen an appetite.  Not the case yet.  Any insight would be helpful.  He is going to waste away if we can't get any nutrition in him.  Our family is devastated....2 1/2 months ago a healthy 69 year old man and today he looks like he is 85.

My husband is 65 and also diagnosed with HCC in 6/2008 and was started on Nexavar his AFP started out at 28000 when we found the cancer, he was put on the medicine and the oncologist told us not to be surprised if the number went up the next month, which it did, but after that, it started to drop and continued dropping until it reached 12 earlier this year, it has started to creep back up slowly, thank the Lord.  He also had bowel issues with diarrhea and tiredness, which we just did our best to work through, still has bowel issues, not quite so bad though.  Through all this, my husband promised me that he would fight and stay positive which he has done tremendously.  He also was very active and seemed to age very quickly which was my cue that something was not right when we started seeing doctors.  If this offers you any hope or encouragement as I hope it does, please try to keep your dad positive and if your believe in prayer circles, which we do, offer him in prayer.  Along with this diagnosis, my husband first fell and broke his hip, so he has been dealing with two issues but I am so proud of him for just "hanging in there".

Thank you for your message.  Dad got the scan results and unfortunately they weren't good.  Seems the tumors have gotten bigger.  He has an addrenal mass that has grown and more portal vein invasion.  His AFP however dropped from 7200 to 7000.  Also the lymph nodes were smaller.  But Doctors had us stop the nexavar.  Dad is just so weak and fatigued.  All he has eaten in a week and 1/2 is diet lipton iced tea and yogurt.  Nothing tastes good its like his body won't let him eat antyhing.  His eyes are getting very yellow and he has this awful cough that wont stop. His billirubin was 5.5 last week. Are there any diet secrets you can share I am afraid if he doesn't get some nourishment that he will soon go.  We never thought that this would happen so quickly.  We had heard of stories like yours where people had lived over a year.  It has only been 2 1/2 months.  My sister is getting married the day after Thanksgiving.  We don't even know if dad will make it to then.  Can anyone offer any hope?

Aren't there any fortifying products you can buy at pharmacists in the form of cream or in liquid form? Instead of yoghurt maybe he could try that...I don't know. My dad is in the exact state diagnosed 2 months ago, for 6 days now on Nexavar. I read about people with Stage IV liver cancer who go to work and fish, and don't understand why our dads fall so quickly...Don't give up hope. Every day is a different day that we have them with us...And we should always remember that maybe it is too soon but it is normal for kids to say goodbye to their parents. Imagine how would they feel if they had to say goodbye to us??