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HepHater
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/27/2010 9:15 AM (GMT -7)   
My husband has been on the transplant for almost 2 years now. He has check ups every 3-6 months. He has been doing very well until the last few months. We went for his check-up on Mar. 16 and they sent him for an ultrasound because I told them "I know my husband and there is something wrong." His legs has been swelling despite being on lasix and aldactone. Well to make a long story short, The ultrasound showed a 2.5cm lesion that was not there in his last ultrasound in Sept. We talked to the transplant center yesterday and they told us that they are almost positive it is cancer because "lesions just don't appear that soon, at that size, for no reason." His AFP levels are elevated above normal levels. He is scheduled for a MRI on Tuesday. They said it's to check to see if it's in any vessels,arteries and/or veins. I'm sick of this awful disease trying to take over our lives. Please pray for my husband, for he is my world.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/27/2010 10:33 AM (GMT -7)   
Hello Hephater and welcome to HealingWell. Sorry about the diagnosis of liver cancer that your husband has. One good thing about it though .......He should get a higher meld score now so that he may get a transplant sooner. They give extra points for it.

I know you are scared.....but now you have to be very proactive with his healthcare. Ask the hepatologist about treatment for it and don't let them drag their heels. There's chemoebulazation and Therasphere (Connie can you add those 2 to our wordlist please, it's on page 6 or 7 of our forum.)both of which our other moderator Connie are familiar with. She has had both treatments.....

Hang in there's lot's of support here on this forum. We also have an educational thread at the top in the Hepatitis Resource.

Take care......thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/27/2010 12:00 PM (GMT -7)   

Hephater (I hate it, too!), welcome to the forum!  As PG mentioned, I also had liver cancer.  When my tumor was discovered via ultrasound, it was 12.5 x 11 cm--taking up almost the entire right lobe.  Worse, it had metastasized into the inferior vena cava (a major vessel that is attached to the liver.)  Because of the metastasis, I was not eligible for a liver transplant.  Because Shands didn't think they could help me, I self-referred to Mayo Jacksonville (FL.)  After bloodwork, scans, and meetings with several different doctors, I received chemoembolization to shrink the tumor, which it did, down to about 9 cm.  It also shrunk the metastasized part back into the main tumor.  I then participated in a study drug, TheraSphere, which essentially killed the tumor and the entire right lobe of my liver.  After several months waiting for the drug to do its work, they operated and removed the rt. lobe of my liver.  This was in May of '06 and I have been in remission ever since, with no further treatment. 

I felt the worst I have ever felt during that time, in terms of ascites and edema, sleeping most of the time, and having no appetite.  After surgery, and with the help of diuretics, I returned to my precancerous state of just feeling dragged out from the hep C.

I want you to know that there is hope.  Your husband's lesion is very small in comparison to mine, so there are a number of treatments they can try (chemoembolization, which shuts off the blood supply to the tumor, cryoablation, and some others.)  As PG mentioned, it will also add points to his MELD score.

My prayers are certainly with your husband.  I had many people praying for me during my cancerous period, and I believe all that positive energy does help.  It's also important that your husband have a positive attitude.  Let him know about my story and that I'm still here.  There is hope.

Hugs,

Connie


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


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 3/27/2010 5:11 PM (GMT -7)   
HH, What's your husbands MELD score? I had the same symptoms as he has, but it happened within a few weeks and my score went from 18 to 24 in a week. I then had a transplant and 2 cancerous tumors were found in the old liver. Let's hope your husband has a score high enough to warrant a new liver ASAP. Good luck! **David**

HepHater
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 3/28/2010 6:43 AM (GMT -7)   
Thanks to you all for your replies. Pink Grandma,I am very proactive in my husbands care. Everyone needs to be in their loved ones care. To the doctors they are just a number, my husband is my life and I will make sure he gets the care he needs. But so far they have been pretty good,but,I'm ready for the fight if the need be. Hep93, it simply amazes me how well you have done. From what I have researched and been told, you are a walking miracle...KUDOS TO YOU.David, his meld score is low,12. That's what makes me so mad.He has been doing everything he was told to do, taking very good care of himself, and now cancer, it's not fair. But then again, nothing is fair about this horrible disease.Thanks to all of you listening, it really helps.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/28/2010 10:47 AM (GMT -7)   

Hephater, please let us know the results of the MRI and what their treatment plan is.  I would be very interested.

Hugs and prayers,

Connie


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


Linda325
Regular Member


Date Joined Mar 2010
Total Posts : 80
   Posted 3/30/2010 7:12 PM (GMT -7)   
Hephater, I am going through a similar experience with my husband. Just wanted to let you know I am praying for you and others on this board. We see the doctor on Thursday and I'm writing out a list of questions. P.G. and Connie have already given some good suggestions. See my post- information needed on liver cancer treatment.

Best wishes for successful treatment.

Linda

HepHater
New Member


Date Joined Mar 2010
Total Posts : 7
   Posted 4/2/2010 7:24 AM (GMT -7)   
Well, the transplant center just called. They said it is cancer,but it is treatable as it stands now. They want to do an angiogram and check his lungs. They also said that he would be moved to the top of the transplant list. Bad news, but could be worse. Please pray for him and we will do the same for all of you that is dealing with this horrible disease. God Bless, and take care.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/2/2010 2:49 PM (GMT -7)   

Hephater, sorry to hear of the cancer diagnosis, but good news that it is treatable and will push him to the top of the transplant list.  I pray it hasn't spread to his lungs, because that will be a whole different story.  Please let us know.

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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