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My AFP was up to 668ng/dl, now it's 81ng/dl without any treatment!...
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My AFP was up to 668ng/dl, now it's 81ng/dl without any treatment! Why?

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...
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Megan - I have a question for you... Have you checked your viral load?

Have you had a biopsy since all of this started?

There are several diseases that HcV can excaberate and cause to fluctuate.

If your doctor's haven't ruled out everything - I think it would be time to get to a specialty clinic or research facility.

Much luck to you - I really don't know what to tell you - except --- MRI's and Tests sometimes do NOT pick up everything and it takes multiple evauluations and serious researchers to figure out what the real problems are....

And sometimes EVERYTHING is a puzzle --- and only once in awhile can they put all of the pieces together.

My suggestion is to start getting referrals --- and figure out if the effects are from HCV caused issues --- and Immune system issues MORE so than cancer...


But - I'm no doctor - and I certainly do not know very much about the Alfofeto protiens...

But I do know - that if my doctors couldn't figure it out --- I'd ask them to send me to specialists instead of playing with my life...

It's like the doctor who diagnoses a gall bladder problem and it's really an appendix problem... Right area --- good guessing --- but WRONG PROBLEM.



Nice to meetcha

Thanks for the hugs, I need them right now.  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?

I don't know, it is all just so frustrating sometimes. I do feel like the doctors are playing with my life. I am too young to have to live my life this way.  Not that I want anyone to feel sorry for me, but life just ***** sometimes...  I graduated with my RN two years ago and I've been out of work longer than I've been in the profession!  Anyways, that was my chance to vent a bit, thanks!
I have sent you a private message. Hopefully we can get HR to chime in.  I think it is best that you repost the summary of your situation with the title:

Hepatitis Researcher - Can you help? AFP up to 668ng/dl...

Then we cross our fingers. He hasn't been by for a while, but I am hopeful he will have some advice when he comes by.

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