My doctors have been very puzzled over the last year. I am 26 years old and have had Hepatitis C for 26 years, from blood transfusions at birth. Last August, my Alpha Fetoprotein was elevated. The initially did a liver angiogram, which was negative. From August until February of this year, my AFP rose steadily to 668ng/dl. I have been having MRI's every six weeks (all negative), and was referred to the university for a transplant evaluation. After having every test known to man (including tests for ovarian cancer) and having my brother evaluated and ultimately accepted as a live donor for me, my AFP spontaineously started to drop. Last reading in August of this year was 81ng/dl. The lowest it has been in 2 years. Now I am still sitting here a year later, after being told I had cancer, with no end in sight. The doctors do not seem to want to proceed with the transplant. I was out of work for a whole year, and now am just getting back to very part time. I am exhausted much of the time and have low grade fevers daily. From what I understand, there is no reason for your AFP to drop unless you have some sort of treatment, which I have not had. Has anyone experienced anything remotely similar to this, or does anyone have any ideas? I would love to get back to living my life...
Some more information I thought may be helpful after posting on another forum:
I haven't had a viral load count since last November, and haven't had a biopsy since March of 2004 which revealed cirrhosis. My doctor's don't want to do another biopsy since I already have cirrhosis and because they can't see anything when doing scans, it would be like hunting for a needle in a haystack.
I am currently seeing a hepatologist at a specialty clinic who is highly recommended by doctors around the state. I have also had a referral at the Mayo Clinic and was referred to the University of Minnesota for the transplant evaluation, which is a research facility. My doctor has talked to other hepatologists around the world at conferences in Spain, and to Canadian doctors as well. I was just hoping that maybe someone out there has heard of this happening...
I am currently seeing a bone marrow specialist at the University regarding some immune issues. My Natural Killer cells (part of your white count), are extremely low. The problem is, the research is fairly new related to these cells, and the doctors aren't absolutely sure what that means. There is some evidence that they may play a role in transplant recovery, so that is why they are so interested. My whole family was tested 3 weeks ago, and my mother's natural killer cells are low as well. We both have the same autoimmune disorder, Crohn's disease, so maybe that has something to do with it?
My daughter, 20, had a very similar situation...she was also born with hcv...has cirrhosis and her afp rose all the way up to 1000 last year...she was evaluated for a transplant, although with many MRI's. cat scans and a ferredex scan nothing was found...her GGT also rose with the afp...then it started to decline 6 months later and came all the way down to near normal level...now 10. Please feel free to email me at JodiRae35 at aol *******
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