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

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...

[Hepatitis Researcher]

AFP can rise simply as a result of increased inflammation, it is not very specific for HCC.
Since yours dropped to much lower levels and the radiology was repeatedly negative, you might want to relax a bit. Another test for HCC, even better than AFP is the soluble Il-2 receptor.
Furthermore your AFP test can be expanded to the more tumor specific AFP-L3% test (Labcorp number 141360), that could calm you down even more and should already have been done with your other, high AFPs.

[Megan5515]

Thank you for your input.  I am actually not all that stressed about numbers anymore, seeing as how it did me no good in the first place.  I just wish there was something that they could do about the fatigue and fevers, because they are what affect my ability to work.  I also get very cloudy and lose focus towards the end of my shift, but I assume that is from the fatigue and fevers.  I am anxious to discuss these other HCC tumor markers with my hepatologist.  As far as I am aware, these other tests have never been performed and I am not sure why.  I will definetly mention them when I follow up in December.  Thanks again.

[merryBe]

you already received the perfect answer, but my question is are you aware that spontaneous remission is not that uncommon. If the body immune system kicks into a high enough gear it and makes extra antibody cells to fight a specific cancer, your number could go up and drop back down again. If the other test HR suggests comes back negative I would breathe easier, but also take the experience as a warning (since you had several high tests we will presume they weren't all lab error and your immune system came to your recue). (however HCV wears the immune system out eventually so...)

the second greatest issue for HCV patients besides the fibrosis and hardening of the liver, is hepatic cancer.
If you are clear of any markers for it now, my question would be why don't you treat for the HCV???

Maybe you already have, but if not, you should certainly consider it before your liver wears out and becomes cancerous.
Your fevers and exaustion are common symptoms for most people with chronic HCV so having this doesn't mean you have cancer even though it does feel lousy.

Is there a reason you aren't able to treat? Usually the young do well with treatment, and it would certainly be easier long term to have success there than to have to consider transplant at your young age.  And, as you must know, even with a donor liver you would still have to treat for the HCV to prevent that liver from succoumbing.

Sorry for your trouble, and so young and pretty, you are too too young to be having it.
I also receive plasma 26 years ago....and was told it was perfectly safe.....rolleyes.

mb.

[Megan5515]

That's the thing, all these doctors keep telling me how crappy my immune system is.  With my natural killer cells being low (tumor fighting cells), and my white count around 3.5, they always say how I have to be careful because my immune system doesn't work well.  I was actually on meds to suppress my immune system until about 6 months ago to help control my Crohn's disease.  I am no longer taking the medication, but my white count remains low.

It is interesting however to know that this can happen with those numbers.  All of the doctors that I have spoken to (and there have been many), were not sure of any reason my AFP would drop without treatment, which I haven't been on in years.  They were all stumped with my numbers.

I have been treated with interferon/ribarviron and pegalated interferon a total of three times.  Once in 1999, once in 2002, and again in 2004 (?).  I did not respond to the treatment.  I have genotype 1A, which I've heard is difficult to treat.

Thanks for your help.  You made today a little bit better :)

[merryBe]

so sorry to hear that news. You've been a trooper then already!
of course, there will be new combos coming. Alinia now, and teleprevir soon may be the things that will tip the scales for many.

If not, well, at least we can thank God for brothers right?
I've read that it is harder to treat while on antirejection drugs, but my theory is since the new liver is not completely infested with HCV the way a long infected liver is, that the sooner one could treat, the better chance one might have. Of course the counter thought is, wait until the liver reaches normal size, but that takes months.

A lot of what I've read, and I think HR has also written on this subject, suggests that the virons are better able to hide in the liver tissue, and more vunerable to the drugs whilst in the bloodstream. If this is the case, then the sooner one could treat with a new liver I would think the better, even if dsages had to be lower to accommodate the smaller liver size.  Perhaps this would overtax the new liver, MAYBE HR would be good enough to weigh in on this.

HR.....would a swift course of tx after TP be the best shot of SVR someone like Megan might have....or would it be too risky??

mb

[jmjm530]

Are you currently seeing a hepatologist or a GI (gastro)? Has your medical team explained why they think you have HCC with only a raised AFP? If you're not currently seeing a hepatologist (liver specialist) and/or your current team isn't communicating with you adequately, my suggestion is you consult with another hepatologist not affiliated with your current hospital. Given what you've stated, something sounds wrong -- either with the medical team's approach or with how they have communicated things to you.

All the best,

-- Jim

[Megan5515]

I do see a hepatologist, and I've had 2nd and 3rd opinions.  My regular hepatologist consults with the transplant surgeon that I have seen at the University of MN on a regular basis.  They just said that they have never seen a AFP rise so rapidly and to 668ng/ml without it being HCC.  They explained that levels can rise due to the Hepatitis C, but that anything over 500ng/ml was diagnostic of HCC, once other cancers were ruled out.  They also agreed that none of them or thier collegues knew of a reason why my AFP would drop so suddenly without any treatment.  Thanks for your comment.

[jmjm530]

Still a bit unclear what is going on.

Are your doctors saying they still think you have HCC in spite of normal MRI's, what appears to be a normal biopsy, and a declining AFP? Or are you just saying they don't know why your AFP declined? In other words, what is your current diagnosis?

Also, was your proposed transplant because of suspected HCC or because of advanced fibosis or cirrhosis? Do you know what stage liver damage you have? In other words, why did they initially send you for a transplant evaluation and why currently don't they want you to have a transplant?

[Megan5515]

Last October they told me I had HCC due to high AFP's, in spite of normal MRI's.  My current diagnosis is "we're not sure why your AFP went down, but we still think it may be cancer and expect those levels to rise again".

The proposed transplant was because of suspected HCC.  I am at Stage 4/ Cirrhosis, but they said that because my liver is functioning well, they do not want to transplant.  They said that if you transplant too early with good liver function, outcomes post surgery are worse.  I'm not sure what to believe anymore...

[jmjm530]

Sounds complex and frustrating and I really feel for you.

Even though you appear to be at the right place, sometimes even the best docs get stuck in a diagnosis -- so sometimes getting new and fresh minds on the case is a good idea.

That's why I suggested you get evaluated by another hepatologist who is not affiliated with your current medical team or their hospital. Unclear if you've done that recently as per after your AFP started dropping.

In addition, you might want to post your stats and concerns to Dr. Dieterich in our professional forum --  although it appears you really need someone who has  your complete medical file in front of them. In fact, he may be a good doctor to see for another consult if logistics permit.

Meanwhile, try and stay positive. It appears they haven't found HCC as of yet, so indeed you may not have it.

Curious though, as a stage 4, why aren't they suggesting treatment either now or in the past before you progressed to stage 4? Or have you tried treatment already?

Here is a link to Dr. Dieterich in the professional forum.
http://www.medhelp.org/forums/show/272

They only allow a few questions a day so you may have to keep trying to get your question in.

All the best,

-- Jim

[Megan5515]

Thanks so much Jim.  I have consulted with another hepatologist since my AFP started dropping, at the University of MN.  My regular hepatologist I see at a clinic.  If you look at previous posts, I was treated 3 times unsucessfully.  There are more details in previous posts from me on this thread.  I have posted in Dr. D's forum, but it doesn't look like he's been around lately to respond?  But I will keep trying to resubmit my question each day...  Thanks again.

[jmjm530]

Just read your previous posts and I admire both your fortitude, attitude and patience in light of some very trying circumstances, especially at such a young age. Hopefully your medical team will find the right answers as they seem well qualified. Have you contacted "TravelMom" who responded to you in the Dr. Dieterich thread? Lots of similarities between you and her daughter. If I remember correctly, she saw some very good specialists and perhaps can share some of what she found out with you. Please keep us posted how things are going.

All the best,

-- Jim

[Megan5515]

Thank you so much.  I did email TravelMom and I was very surprised to find someone that had been through this.  Unfortunately, her doctors did not give her any real answers as to why this was happening, but at least I now have something to bring to my doctors in December to get them thinking about things a little more.  I will keep you all posted as I find out anything new.  This forum is so helpful, hopefully I will be able to help someone as well.

[merryBe]

cancer is a funny thing, there are so many types, and they say we all have thousands of cancer cells form every day, but the immune system gets rid of them.

I had ovarian cancer, had the ovary removed, and from then on my CA125 marker went back to normal. By normal they meant, I only had a few dozen of these cells forming everyday, the same as every other woman does.

As a nurse I'm sure you know lots of this, but it doesn't hurt to know that at any given time the body can mount a campaign against a virus or a cancer, and often win the war.
I think the lymphatic system is truly a facinatingly complex marvel of design.
It never hurts to hear these things happen. My cousin was given a 1% chance with lymphoma spread to the brain, and made it.
The best chemo therapies that we will be seeing in the next few years many more of, are the designer drugs that mimic what genes get turned on natural to fight cancers.
Now that the human genome is being understood we are learning how to stimulate or turn off certain genes, just as our body does to fight disease. The day may come when we can detect AND defeat without major sides most every cancer. I will likely be in your lifetime that this occurs at the rate they are now learning. all good thoughts.
mb

[CoWriter]

Let me tell you what jumps out at me from your post.....

"From August until February of this year, my AFP rose steadily to 668ng/dl"

"August of this year was 81ng/dl."

From February to August is 6 MONTHS....(so the AFP decreased in 6 months).


"I was actually on meds to suppress my immune system until about 6 MONTHS ago to help control my Crohn's disease."


For the past 6 MONTHS you haven't taken medication for Crohn's, probably because your Crohn's is better, right?


Crohn's causes inflammation....and as HR said, a high AFP can be caused by INFLAMMATION.  

So perhaps the high AFP was being caused by the inflammation from the Crohn's....and when the Crohn's got better (in the last 6 months), the AFP went down (yeap, over the last 6 months).

It makes sense, don't you think?

[CoWriter]

Looks like I may be right.....

"The AFP level can also be increased by conditions other than cancer.  Bowel inflammations, such as colitis, can cause a higher AFP level. "

http://www.jewishhospital.org/myjewishhospital/encyclopediaHTML/1029.html

[Megan5515]

The medication was just for maintenance of my Crohn's.  I haven't had a lot of problems with my crohn's in years.  I stopped the medication because they weren't sure if the medication was affecting my natural killer cells.  6 weeks later, my natural killer cells were the same, so they are assumming that the low counts were not from the meds.  Thanks for your help, but I don't really think that I was in a Crohn's flare while my AFP was rising.  Thanks though!