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 died...as 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!
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"But that was yesterday, and I was a different person then."
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Post Edited (hep93) : 4/6/2009 4:54:05 PM (GMT-6)