Liver clinical trials, Mayo Clinic & Questions!

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New Member

Date Joined Mar 2009
Total Posts : 18
   Posted 4/6/2009 2:13 PM (GMT -7)   

I’ve been doing a lot of research today, I’ve spent hours on the computer which is probably both a good and bad thing. I’ve found the best resource for information is other patients and those who care for them. I have a few questions for anyone out there who has had some experience with this. Here’s a recap of my situation:

  • I’m a 37 y/o female
  • I’m married with one 17month old child
  • I was diagnosed with Primary Biliary Cirrhosis with overlap features of Autoimmune Hepatitis in October/November 2008, but, we now know that I actually had the disease while pregnant in 2007. I can recall symptoms back to 2005.
  • I am currently taking: Urso Forte – 1000mg/day; Colestid – 4gm/day; Prednisone 20mg/day (down from 40mg/day).
  • I am being treated by Mayo Clinic in Jacksonville.

 Some questions for you:

  1. Does anyone have experience with the Mayo Clinic in Jacksonville? What are your thoughts/opinions/advice/pointers?
  2. Has anyone ever participated in liver disease related clinical trials?
  3. My docs have not been helpful with diet/nutrition information - they haven’t even told me to stay away from alcohol; I’m an occasional social drinker. I may have 1-2 drinks per month, but should I avoid it entirely?

 I think I’m probably in stage 1, but I haven’t gotten a firm answer on that either yet. Can anyone speak to the length of time from diagnosis to failure?


Also, did anyone see Oprah a few weeks ago where Dr. Oz spoke about organ regeneration? He talked about the University of Wake Forest’s regeneration program. They are actively growing new organs (including livers) from a patients own cells and transplanting these organs back into the patient. This removes the threat of rejection. I’ve done some further reading on it, it’s amazing stuff. All of you waiting for a transplant…have you heard of this?


Lastly, those of you waiting for a transplant, is partial-donation not an option for you? If the liver regenerates itself can’t someone donate just a portion to you?


Sorry for all the questions…I just have so many ?? and not enough resources.

Veteran Member

Date Joined Aug 2008
Total Posts : 613
   Posted 4/6/2009 3:33 PM (GMT -7)   
Finnster's Mom,

I cannot answer all of your questions, but I can address a couple of issues. I personally do not have experience w/ Mayo Clinic in jacksonville, but I have heard other members here speak very highly of it.

With regard to drinking alcohol.....alcohol is an absolute no-no whether you are a social drinker or not. Alcohol and liver disease just do not mix! So, you do need to abstain from drinking.

With regard to diet, you should be on a low sodium diet and be VERY careful of the proteins. Red meat in particular is very hard for a diseased liver to digest, so try to get your proteins from other sources...."lighter" meats, lots of fresh fruits & veggies.....

With regard to length of time from diagnosis to failure...this is a question alot of people ask. And, unfortunately there is no "cookie cutter" answer as everry person is different. If you eat right, don't drink, take good care of yourself, you could live a long, happy life before your liverr goes into failure, but then again, depending on how your body handles the disease....every person is differnt.

I know most transplant centers are very involved in clinical drug trials post transplant, but I am not real sure of pre-transplant trials. Would love it if there were some that my poor hubby could try.

While it is true that the liver regenerates itself, not everyone is a good candidate for a live donor transplantation. You would definitely need to speak with your hepatologist about that one.

I hope I have not confused you more. Do make the dietary changes, as that helps your liver in the long run.

You take good care of yourself. I am glad you have found us.....


Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 4/6/2009 3:48 PM (GMT -7)   

FM, as I've mentioned previously, I am also treated at Mayo.  I trust them implicitly because they literally saved my life.  My primary liver cancer (HCC) had metastasized to the inferior vena cava by the time I was diagnosed in '05 at Shands.  I had such a difficult time trying to get an oncology appt. there that I gave up (I think they considered me a "lost cause") and requested an appt. online at Mayo.  I've been treated there ever since, not only for liver disease but also a revision to my left hip replacement, and whatever else comes up.

My tumor was huge (about 8.5 x 7 cm), taking up most of the rt. lobe of my liver.  Because it had also metastasized, it was considered inoperable.  After Chemoembolization to shrink the tumor, and a study drug (I was #2 to have it given to me), TheraSphere (microscopic beads of radiation injected into the tumor itself), the tumor well as the entire rt. lobe of my liver.  You would not believe the amount of paperwork and releases I had to sign to get the drug...then it was delayed twice.  Mayo Jacksonville had never given it before, so there was a lot of red tape.  I had surgery to remove that rt. lobe about 3 mos. after treatment (It took that long to get a result from the TheraSphere.)  I was told the rt. lobe would not regenerate, but I'm doing fine on the liver that's left.  The end of May will be 2 yrs. since my cancer surgery and so far, so good.  The TheraSphere was not a clinical trial, but one step beyond that...a study drug, used to compare people with liver cancer who got the drug against those who didn't.  This study was actually supposed to be for liver metastasis (with the cancer being primary at another site), but I guess they gave it to me as a last resort.  Because of the metastasis, I wasn't eligible for a transplant.  I'm sure that Mayo has a number of clinical trials going on.

I did see the Oprah episode you spoke of, though I must've missed the part about the liver cells.  This sounds very new and not something that would be done routinely at this point as far as transplant.  In addition, for someone whose liver is in terrible shape, it wouldn't make sense to make a new liver from damaged cells.  I think they have a long way to go on this one.  In addition, I don't think you are in liver failure or needing a transplant at this point.  I understand that you want to see what might lie ahead and what's available, etc., but whatever treatment you have needs to be tailored to your needs.

It goes without saying that anyone with liver disease shouldn't drink at all.  Perhaps your doctor didn't think it was necessary to tell you this, as it's pretty obvious.  NSAIDs aren't good for the liver, either (or the kidneys over time.)

Partial liver transplant from a living donor is not as simple as it seems.  It is more than having the same blood type.  Also, because of the risk to the donor, it's not something that's routinely done.  Some centers won't do them at all.  I'm not sure about Mayo.  However, if the patient is in eminent danger of dying and there are no cadaver livers available, I would bet that they would consider a living donor.

If you are unhappy with your present Mayo doctor, you can request a different one.  Do you know that on their web site they list all their docs (with pics), their education, etc.?  Before I got to the hepatologist I have now, I saw 2 other hepatologists, each of them once.  It seems like they were doing the primary work of ordering tests, etc.  I'm completely satisfied with my current hepatologist, who has been treating me for a couple of years.  She stays booked up for 2-3 mos. in advance, though.  I had a top-notch interventional radiologist, too, who did the treatments and some procedures.  Everytime he sees me in the halls or waiting room, he stops to talk with me.  A real doll and genuinely interested in my welfare.

I couldn't get my quarterly CT scan last week due to elevated creatinine, so they gave me an Rx to take beforehand and I expect to be there again on Wed.  Hopefully, we can do it this time. 

I've found Mayo to be very thorough and cautious, while also being on the cutting edge of new treatments and procedures.

Best of luck!

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

Post Edited (hep93) : 4/6/2009 4:54:05 PM (GMT-6)

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