Hepatocellular Carcinoma

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Bea19
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/18/2009 3:55 AM (GMT -7)   
Hello all,
I have been reading the posts in this forum for a while and I can see some of you know quite a lot about this fatal illness, and I wondered if you could give me some info, please.
 
My dad was diagnosed with a Hepatocellular carcinoma last September and he was given 3 months to live. Since then his been on Nexavar which seems to be working as my dad is still with us (thank God!) but he is well underweight, eats very little, spends most of his time in bed as he's too tired to do anything else.
We took him to hospital with a chess infection and the doctor's report said:
-Growing hepatocellular Carcinoma which is pushing the kidney & liver and presents a necrosis and peritumoral liquid.
- Hepatic cirrhosis

- Cronic Anaemia
- Given the extense of the process he's only apt for paliative care. Further blood transfusion every 15 days.
 
Doctor's always says he's very ill, but he doesn't explain what we are to expect, or what we have to do. My dad is at home and it's very hard for everybody because we don't know what we can do for him, apart from making him confortable.
 
Please, can you advise on what to expect, what signs to look for to know if he's realy sick or in the final stage ... my mum is on her own with my dad and we want her to be prepared for a critic situation.  
 
Many thanks to all, Bea19

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/18/2009 9:03 AM (GMT -7)   

Bea, I am glad you found us.  I am so very sorry about your dad.  I, too, was diagnosed with HCC in '05 and there seemed to be little hope for survival.  However, I went to Mayo Clinic and went through some treatments to shrink the tumor, and then a surgery to remove the entire right lobe of my liver...and, by some miracle, I have been cancer free for nearly 2 yrs.  I am so sorry that your dad's CA was not found and treated earlier.  He does seem to be end-stage, but it's impossible to say how much longer he has or how his disease will play out. 

From the sound of your post, I am betting that you are overseas...perhaps England?  The doctors are telling your family that palliative care is the only thing to be done.  That means to keep him as comfortable as possible with pain meds and whatever else will help him feel more comfortable.  It is likely that he will grow weaker and stop eating altogether.  Try to keep him hydrated.  He may also just slip into a coma.

I don't believe you have Hospice over there, but if it is possible to get some home health care to help out your mom, or just to give her a breather once in awhile so she can get out for a few hours, that would be of help.  You might want to read the topic on here about Death and Dying.

I'm sorry I can't give you any other ideas.  My heart goes out to you.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 3/18/2009 10:20:08 AM (GMT-6)


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 3/18/2009 10:17 PM (GMT -7)   

Bea,

I am so sorry to hear about your father.  My husband recently died from liver cancer.  He was on Nexavar for a couple of months, but when we found out that it wasn't really doing him any good, he went off of it.  Although it's not an actual chemo drug it has a lot of the same affects, weakness, just plain sick feeling.  When we took him off the medicine he felt alot better and a better quality of life until the last month he lived.  I honestly didn't think he would last long while he was taking the medicine, because he was so sick, we were really surprised at the difference when he quit taking it.  He was only 54.  I don't know if this info will help in your fathers' situation, but when you know they are not going to make, I believe in quality of life instead of quanity.  Your family will be in my prayers.

Helen


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 3/19/2009 3:57 AM (GMT -7)   
Bea

I am very sorry to hear about your father. I do not have experience with liver cancer however with any lengthy any help/aide that can be provided to your mom would be helpful. My thoughts and prayers go out to you and your family.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/19/2009 11:12 AM (GMT -7)   
Helen, in regard to what you said, regular chemo does not work with liver cancer.  So I'm not surprised that your dad felt better off the med.  The treatment I received was focused to shut off the blood supply to the tumor (chemoembolizaton) and to shrink and kill the tumor (TheraSphere, a study drug, which is actually microscopic beads of radiation injected into the tumor.)  Fortunately, those treatments worked so that I became operable, which I had not been prior to that.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 3/19/2009 8:13 PM (GMT -7)   

Connie, Chemo was never an option for my husband, I was just comparing the side effects.  You were blessed the treatment worked for you, and I thank God that there are treatments for some and I pray that you stay cancer free.

Helen


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/19/2009 8:21 PM (GMT -7)   
Thank you, Helen.  It sure does limit the options when you learn that regular chemo, used for breast cancer, etc., doesn't work for liver cancer.  That's why HCC is usually a death sentence.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Bea19
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/23/2009 3:27 AM (GMT -7)   
Hello & Thank you all for your replies.

We all have to lose our parents sometime or other, even though we avoid thinking about it, but to see them waste away this way is very hard. The hardest thing we've had to deal with ever. We will try and make the best of whatever time my dad's got left.

I will have you all in my prayers, too

Best regards, Bea19

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/23/2009 8:25 AM (GMT -7)   

Bea, please continue to post here for support.

Our thoughts and prayers are with you and your family.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Bea19
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 3/25/2009 6:41 AM (GMT -7)   
Hello everyone,
 
We took my dad for a routine ckeck on Monday, the doctor decided he should stay in hospital for a few days as my dad had blood in his stomach and lungs. The doctor has told us today he is off the Nexavar. My dad will now be on painkillers and nothing else.  He's concious, his reasoning is perfect, no joundice. It seems unfair to give up on him so soon. He'll be discharged from hospital on Friday as there's nothing else they can do for him.
 
It's very sad. You all know the feeling.
 
My heart goes out to all of you suffering from this disease and your families.
 
Rgds, Bea
 
 
 

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 3/25/2009 12:20 PM (GMT -7)   
Bea19, I too am so sorry that your dad and family have to endure the pain of terminal cancer. My mom died in 07 from the same diagnosis so I can relate. You did make a comment on your dads loss of appetite and I can tell you that there is a medication called "Megace" that your dad can take. I requested it for my mom and her appetite increased substantially. In fact she ate regular meals until we had tp place her in hospice. She had a little more energy once she started eating.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Bea19
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 5/12/2009 3:30 AM (GMT -7)   
Hello All,
Since my dad came off the medication (Nexavar) he's feeling much better, he has more energy, he wants to go for walks and he's appetite is back to normal. He hasn't had any more stomach bleeding. Which is all Great!

But, Is this normal? could it be that Nexavar was doing him more bad than good? Is it just a "withdrawal" symptom?
It's great to see him like this and we're wondering if all the suffering he's being going through this past Winter could have been avoided.
Is Nexavar as good as they say?
Thank you all for the support. Even if I don't write, I often read the posts.
Best regards, B

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/12/2009 12:16 PM (GMT -7)   

Hi, Bea!  Thanks for checking in.  I'm so glad that your dad is feeling better.  It does sound like he's having the exact same response that OkieLady's dad had upon coming off Nexavar (see her post up under your first one.)

I can tell you that when I had liver cancer, I had no symptoms.  I never would have known I had it were it not for the sonogram I had every year that discovered it.  I still feel exhausted all the time, but that's the hep C. 

Just enjoy your dad while you have him and let him do whatever he feels up to doing.  When he starts to fail, it will likely be sudden...though that phase could last a good long while.  So enjoy this period of calm.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 5/27/2009 12:02:03 PM (GMT-6)


NV
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/27/2009 9:57 AM (GMT -7)   
Hi Bea,

Sorry to hear about your Dad but I'm sooo glad he is feeling better. My father was also diagnosed with Hepatocellular cancer inoperable as the tumor was too large and too far advanced...he had no symptoms.

I find the psychological battle worse than the actual cancer. We are on a waiting list for pills, the same ones your father had, and he was declined on the first round. Is he not sick enough?? Not pleased with the system and there really is no support. Dad was give 3months initially, then I emailed another cancer specialist at the National Cancer Institue and he said 12 - 14months with the drugs. I don't really want to give him the drug and go the homeopathic way. He has reiki treatments once a week and they make him fell better. Maybe your father should try them.

Keep up the faith and continued good health to your Dad!!

N4vr

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/27/2009 11:05 AM (GMT -7)   
NV, welcome to the forum.  I am very sorry that your dad also has HCC.  As you know from the above posts, I can empathize.  I feel very fortunate to have overcome it, at least for now.  There's no guarantee that it won't return in the future or show up as cancer in a different organ.
 
It would be best if you would copy and paste your post, or start a new one in a new topic, so that you will not be overlooked.  We want you to get the most replies possible.  I know you will get a lot of support here.
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Bea19
New Member


Date Joined Mar 2009
Total Posts : 5
   Posted 7/2/2009 4:57 AM (GMT -7)   

Hello N4vr & every one!

My apologies for taking so long to reply.  When my dad was diagnosed with HCC (September 2008) we were told he had 3 months left to live, but with Nexavar his life expectancy would at least double.  He stopped taking these pills last March and since then there has been a great improvement. He's a lot happier and put on some weight.  Only  recently he seems to lose concentration and sometimes he doesn't understand what we say and seems disorientated. Also he's been having a lot more pain than usual in the abdomen area and his legs and abdomen are quite swollen. 

But 9 months later, he's still with us (thank God) and we are giving him everything he asks for as we are trying to make his last days as good as possible. He's like a spoiled child! 

If any one can advice on the worst to come so we might be prepared, it'd be appreciated.

Thank you all for your words, you all are in my prayers.

Rgds, Bea

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/2/2009 10:16 AM (GMT -7)   

Hi, Bea!  I'm so glad to hear that your dad is still with you and doing reasonably well.  I suggest you read the educational thread in the folder Hepatitis Resources at the top of the page.  In particular, read the Stages of Liver Disease and the piece on Death and Dying.  They are quite informative.  The problem is that no two people are alike.  This is a very individualistic disease--just liver disease in itself--and then when you throw in HCC, there's just no way to tell.  It seems to me that Nexavar diminishes quality of life.  I'm glad that you are just giving your dad whatever he wants.  The symptoms you describe are most likely associated with growth of his tumor and possibly metastasis to other organs.

There is no way to know how much longer your dad has to live.  Just enjoy him while he's here.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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