What to expect

My husband was just diagnosed with HCC on 12/31/08.   the tumor is 6.8 cm - his levels are extremely high.   We are currently talkgin to a doctor at the University of Penn in Philadelpha PA.  We were told surgery is not an option right now due to the portal vien being pentrated by the tumor.   He is recommending he  start on Sorafenib.   He also has Hep C which probably contracted about 32 years ago but only recently diagnosed 7 years ago.  I am at complete loss what to expect from this disease.   Currently he is not showing any major signs and feels fine.   However, doctor explained his body is working on reserves right now.  Please help me as his caregiver to understand what to expect and what I can do to make it easier and less painful.  

 

On 2/4/2009 Buggie wrote:

My husband was just diagnosed with HCC on 12/31/08.   the tumor is 6.8 cm - his levels are extremely high.   We are currently talkgin to a doctor at the University of Penn in Philadelpha PA.  We were told surgery is not an option right now due to the portal vien being pentrated by the tumor.   He is recommending he  start on Sorafenib.   He also has Hep C which probably contracted about 32 years ago but only recently diagnosed 7 years ago.  I am at complete loss what to expect from this disease.   Currently he is not showing any major signs and feels fine.   However, doctor explained his body is working on reserves right now.  Please help me as his caregiver to understand what to expect and what I can do to make it easier and less painful.  

So sorry to hear you are going through this. It could have been me writing it about 15 months ago. Sounds almost identical to my former husbands condition.

If the doctors are putting him on Nexavar, that is probably the best they can do for him. That will extend life by a few months. But be advised...there are many side affects that he may or may not want to go through. That will be a decision for him to make, but talk with your doctor about it. After my  husband started taking that, his quality of life went down drastically! I don't believe I ever saw him smile again.

If he is in stage IV, be there for him, and don't hold back anything as far as what you'd like to say. He probably has a short time left, and my only regret is I allowed myself to "deny" that it was happening to him.  (for his sake)

Confusion, irriattablilty with occur, swelling of stomach,feet, legs, etc.It usually happens soon after being dx, so be prepared.

Also, don't be afraind to get hospice involved. The sooner the better. They can be a wonderful support for the patient and caregivers. They know their business.

My husband, with Nexavar, was able to live 9 months, although it was not quality time.

My thoughts are with you at this very difficult time.

Connie

Buggie:

I also have HCC in my liver. It was diagnosed over two years ago. I went to the Mayo Clinic in Rochester, MN and they removed the portion of the liver with the tumor. Unfortunately, it returned a year later. I have received a Y90 radiation treatment called Therasphere and four chemoembilation treaments. So far, I am doing fine and my last checkup at Mayo was good enough that I did not need a treatment. I suggest that you get your husband to a place that specializes in liver cancer i.e. Mayo or the M.D. Anderson Clinic in Houston. There are new treatments for this disease coming on board all the time. I started taking Milk Thistle (available at all drug stores in the vitamin section) and I am convinced that it has helped immensely with my cancer. Don't settle for just taking Nexavar or a drug to extend life for a few months, fight to win the battle or extend it for as long as possible. Make sure you have the most informed doctors and cared possible. You and your husband will be in my prayers.

Points00

 

On 2/5/2009 points00 wrote:

Buggie:

I also have HCC in my liver. It was diagnosed over two years ago. I went to the Mayo Clinic in Rochester, MN and they removed the portion of the liver with the tumor. Unfortunately, it returned a year later. I have received a Y90 radiation treatment called Therasphere and four chemoembilation treaments. So far, I am doing fine and my last checkup at Mayo was good enough that I did not need a treatment. I suggest that you get your husband to a place that specializes in liver cancer i.e. Mayo or the M.D. Anderson Clinic in Houston. There are new treatments for this disease coming on board all the time. I started taking Milk Thistle (available at all drug stores in the vitamin section) and I am convinced that it has helped immensely with my cancer. Don't settle for just taking Nexavar or a drug to extend life for a few months, fight to win the battle or extend it for as long as possible. Make sure you have the most informed doctors and cared possible. You and your husband will be in my prayers.

Points00

Sounds like you (Points00) are one with HCC, maybe not into stage IV when dx. That is great. So many are, and that is a contributing factor to how they treat the cancer. If they offer Nexavar (only) from the very start, likely it is advanced.

My husband had a very knowledgeable Oncologist, highly recommended. I wondered at dx, why he was not doing more, because we too had heard of all the 'new' things that are being done for HCC. Why not I asked.  Too far advanced was his (private) response to me. He could have put my husband through many different things, but he did not want to put him through all of that, knowing it would not help.

Looking back, I now can see why his doctor treated him with all that was left to extend life. I don't believe my husband would have done it, if he had known it was to extend life for only a few months. I think he would opt for the better quality, vs quantity. It was very very sad watching his decline, not being able to do a thing. So So Sad!

I hope your treatment continues to be benficial to you. We should never give up hope, that is for sure.

Connie

Buggie,

Every case is different so you have to review information people provide in these forums advisedly since it might not be applicable for your situation  for reasons not apparent from the discussion here.  But all doctors and cancer centers are also different so I do believe that forums like this provide a valuable service for people to share their experiences and suggect options to look into.

Having said all that, I very much agree with Points00.  My situation was much the same as you husband's when I was diagnosed about a year ago.  I have both HCC and HCV, I had a tumor of about 6 cm, and I have portal vein thrombosis.  My medical team at Baylor in Dallas has treated me very agressively with TACE, Nexavar, and most recently CyberKnife and I'm still here today.  Also, while the Nexavar was a little difficult at first, these days it's just another one of the many meds I have to take every day.  And I agree that milk thistle is great stuff.  I may crash and burn tomorrow, but right now I'm feeling fine.  So find out as much as you can about this disease and don't hesitate to ask for second opinions.  In addition to the medical centers Points00 lists, I hear that the cancer center at the University of Pittsburg is excellent.  In fact I know they are recruiting for some very promising Phase II trials right now.  Clark Gamblin is one of the doctors there who comes very highly recommended.

Don't give up!

Andy

Hi, everybody has given you some really good advice.  I had HCC 2 years ago and was fortunate in that I had the surgery at stage 1.  I am 2 years post resection now and doing well.  It sounds like you are at a good hospital but like others told you, I would look for other options and leave no stone unturned.  There are other treatments as well as clinical trials.  After my surgery, I knew I wanted to pursue immunotherapy and change the terrain in my body so I also did some alternatives.  I wish you the best of luck and prayers and remember to take care of yourself as well.  iris