Aa
A
A
Close
642936_tn?1239295766
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...
Cancel
3 Answers
Page 1 of 1
217229_tn?1192766004
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...

OK?

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.

OK?

Hugs,

Nice to meetcha

Meki
Comment
Cancel
217229_tn?1192766004
Comment
Comment
Submit Comment
642936_tn?1239295766
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!
Comment
Cancel
642936_tn?1239295766
Comment
Comment
Submit Comment
Avatar_universal
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.

Foo
Comment
Cancel
Avatar_universal
Comment
Comment
Submit Comment
Your Answer
642936_tn?1239295766
Answer
Know how to answer? Tap here to leave your answer...
Answer
My AFP was up to 668ng/dl, now it's 81ng/dl without any treatment! Why?
Submit Answer
A
A
Recent Activity
406584_tn?1399591666
Blank
10356 commented on Jade59's status
21 hrs ago
1415174_tn?1453246703
Blank
mkh9 commented on photo
Feb 11
Avatar_universal
Blank
zahidkapariya commented on photo
Feb 11
Blank
Weight Tracker
Track your weight over time
Start Tracking Now
Top Hepatitis Answerers
683231_tn?1438659664
Blank
flyinlynn
Auburn, WA
Avatar_m_tn
Blank
can-do-man
IN
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA
446474_tn?1446351282
Blank
HectorSF
San Francisco, CA
317787_tn?1428318779
Blank
Dee1956
DC
1815939_tn?1377995399
Blank
pooh55811
Hepatitis C Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
Marathon Running Done Over Many Yea...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
233488_tn?1310696703
Blank
New Article on Multifocal IOL vs &q...
May 21 by John C Hagan III, MD, FACS, FAAOBlank
748543_tn?1443740527
Blank
TMJ/TMJ The Connection Between Teet...
01/15 by Hamidreza Nassery , DMD, FICOI, FAGD, FICCMOBlank
Top Hepatitis Answerers
683231_tn?1438659664
Blank
flyinlynn
Auburn, WA
Avatar_m_tn
Blank
can-do-man
IN
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA
446474_tn?1446351282
Blank
HectorSF
San Francisco, CA
317787_tn?1428318779
Blank
Dee1956
DC
1815939_tn?1377995399
Blank
pooh55811