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Update

It's been a really long time since I've posted on here.  Things have been up and down, and up and down again.  My current AFP is 759 ng/dl and serial MRI's are still negative for a tumor.  Bili was up to 3.1, but now down to 2.5.  Not feeling the greatest, going in for another Liver Angiogram next week.  

Until something actually changes,

Megan
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16 Comments Post a Comment
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87972_tn?1322664839
Hi Megan,

I vaguely remember you, but it’s been a long time, as you say. You might have to refresh our memory with the long version, I’m afraid :o). Good to see you again,

Bill
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642936_tn?1239295766
Ok, so I'm really lazy and don't feel like typing my story right now, so here is a copy of my first post.  Thanks, I forget how good this site makes you feel, knowing there are others out there...


My AFP was up to 668ng/dl, now it's 81ng/dl without any treatment! Why?
by Megan5515, Oct 06, 2008 09:41PM
Tags: afp, Alpha fetoprotein, Liver Disease, Cancer
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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Avatar_m_tn
Wow! that is quite a mystery. You have proberly been waiting for something to happen these last few years and sorry to see nothing has been clarified.
I wish I could help some way but all I can offer is my prayers and wish you the best of luck with finding out what is going on.
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Avatar_m_tn
Wow, You have a lot on your shoulders. Welcome back to the forum. As you know this is a great place to find support!
- Dave
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Hi Megan,

I wish I could help.  I remember how frustrating it was for you to have so many tests and yet for it to remain a mystery why your AFP's were often over 500.

Have you discussed the new STAT-C drugs with your docs? I know your three previous tx's didn't work but is there a chance that adding a STAT-C could be your ticket to clearing the virus?

Has anyone on your medical team given you any new leads as to what the core problem might be?

Is your brother still willing and able to be a live donor, if - and I hope not - it comes to that?

You're an amazing young woman and please keep us posted about the liver angiogram results. Have you been able to go back to work part-time?

Best wishes and hoping that someone figures this out soon,

Susan
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I'm confused. You mention that they evaluated your brother to see if he could be a live donor. Does that mean you need a transplant? Do you have cirrhosis?

So young to feel so bad! Have you thought of getting a second opinion? I'd hate to just sit and wait for the doctors to decide to do something.

You're in my thoughts and prayers,
Diane
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1225178_tn?1318984204
I forgot... have you ever done treatment?
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338734_tn?1377163768
The fact that your AFP has decreased rather than increased, no tumors are showing up on imaging, and that you are still with us almost two years after your original post, all bode well that you may not have HCC.

I do not know about the mystery with the decreased AFP, but it looks like a positive sign. Maybe you can TX and keep your existing liver. What do the doctors say?
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642936_tn?1239295766
Yes, I do have cirrhosis and will eventually need a transplant.  I am on the list, but until they find a tumor or my labs look worse, I just kind of sit there.  Current meld is 13.  I have has second and third and forth opinions, and no one knows why my AFP would rise so fast, then fall.  Now it is the highest it's ever been again at 759ng/dl.  Obviously my AFP doesnt cause too much alarm anymore since no one can tell me what it means.  Yes, I have been treated three different times, without sucess.  My doctors are pretty good at keeping my updated on new treatments, but I will be sure to ask about the new Stat-C drugs.  My brother is still a candidate for live donor, although I am sure after all this time he would need to be evaluated again to make sure he is healthy enough...  


Thanks for all the comments and I will keep you all posted about Tuesday's angio...
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338734_tn?1377163768
It is kind of ironic. Probably the ONLY good thing about an HCC tumor is that you will get bumped up on the transplant list. Keep in mind this bump is because you probably have a corresponding downward bump in life expectancy without a transplant. You also run the risk that the tumor will exceed the number or size allowed at your transplant center (reference "Milan Criteria").

Overall, I suppose that an HCC diagnosis is likely something you would want not to have.

I hope it works out for the best for you!
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642936_tn?1239295766
Tuesday's angio went much better than expected... The area that they were concerned about turned out to be a small aneurysm from previous liver biopsies, and NOT A TUMOR!  Great news for now, now if they can just get me feeling better!
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Great news Megan, that must be some relief for you! - Dave
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A tremendous relief to hear this, Megan. Now what's the next step?

Susan
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548668_tn?1394190822
Congrats on the great news!!  One closer step to getting your life back...

I'm not an expert, but I do know that the AFP is a 'marker' and a diagnosis can't be made on that alone, which is probably one of the reasons why you had the ongoing MRI's.   Your docs do sound as though they're being pretty thorough;  I hope there's some news for you on the newer treatments and that you're starting to feel a little better soon...

  



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642936_tn?1239295766
Next step is to hurry up and wait... I see my hepatologist on the 30th to follow up from the angio, but I doubt he'll have anything new... Rheumatology may try increasing the lupus meds to see if that helps with the fatigue and such...  Hopefully they figure out something.  On a better note, I was just awarded social security disability.  A huge relief to not have to worry about where my income and health insurance are coming from when I am in and out of work so much...
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338734_tn?1377163768
Certainly good news! Good news on the disability, also. It must be a real load iff the mind.
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