Sunday, August 21, 2011

Liver Cancer? Hepatitis C and the Alpha-Fetoprotein (AFP) Blood Test

In my August 12, 2011 post about the results of my recent blood tests, I mentioned the alarmingly elevated level of a new blood test that my doc ordered - the Alpha-Fetoprotein (AFP) test - which is an indicator of liver cancer. When I heard "AFP" I thought of a blood test I took when I was pregnant with both of my children. I've learned that the tests are one and the same.

According to an article from Gastroenterol that was cited on HCV Advocate’s hepatitis blog:
Alfa-fetoprotein (AFP) is a blood test that is used widely to detect abnormalities that may be an indication of the presence of certain types of cancers... In viral hepatitis it is a test used to indicate liver cancer... In people with chronic hepatitis C most providers will generally start monitoring for liver cancer using the AFP test and liver imaging once someone has developed severe fibrosis or cirrhosis.
As I continued my search for information about the AFP test, liver cancer and how to interpret AFP test results for people like me who have Hepatitis C and a cirrhotic liver, I found a web page about hepatic tumors written by D. Montgomery Bissell, MD, for Gastroenterology students at the University of California, San Francisco. He stated the following:
As a surveillance tool, AFP is readily available and inexpensive but has many limitations. Its specificity is poor, particularly in patients with chronic hepatitis C, in whom the value often exceeds normal (in the 5-100 range, presumably on the basis of regenerative activity). False negative results are not infrequent, which is the reason for including basic imaging in routine HCC surveillance. The utility of AFP is largely two-fold: (1) A progressively rising value has much greater specificity than a single test and requires a search for HCC; (2) AFP >500 is assumed to reflect HCC even if imaging is negative, and qualifies for transplant listing. Also, a very high AFP (>1000) suggests vascular invasion and metastasis.
Given this information, my AFP test result of 106, when the normal range is about 0 - 8, isn't something I need to be concerned about today. If the level continues to rise... well, we'll cross that bridge if we ever get to it.

Photo by Franco Giovanella,

Monday, August 15, 2011

Tackling the Itch: A Medication That Worked and the Skin Products That Helped Most

For many weeks I've been vexed by severe itching. The condition is called pruritis and it's caused by my poorly functioning liver. The two meds I tried so far didn't work, so my doc prescribed a third: Cholestryramine. At last, we found something that works! What a relief. Few things are more uncomfortable than incessant itching and I'm very grateful for relief.

Note: Mark left a comment on my June 24, 2011 blog post, recommending Cholestyramine. You were right - thank you for your suggestion!

Pruritis is a condition that isn't alleviated by topical treatments. Calamine lotion and products like it are ineffective. Nonetheless, I kept my skin well moisturized - why run the risk of dry skin itch compounding the existing pruritis, right?

Here are the moisturizing products that I've been using, all of which I highly recommend:
Skin Free makes my favorite skin care products. They're super-rich without being oily. The body balm is a great all-over moisturizer that I usually apply in the shower before toweling dry after bathing. And the butter stick is the best smelling moisturizer I've ever used.

My every-day, all-day-long lotion is made by Gold Bond. Obviously, Gold Bond isn't just for just for jock itch. I use the Ultimate Healing Skin Therapy Lotion. As the company states, this lotion has "... aloe to heal dry, problem skin." It's the thickest lotion I've ever used and while it costs more than other brands, to me it's well worth the money.

Lastly, I recommend Eucerin. I first used the Original Moisturizing Creme in the hospital after my liver transplant, when it was given to me by docs. I was told to put it on my lips, which were scraped and terribly scabbed by tape used to hold tubes in place. It was very healing and I'm happy to say that my lips are as good as new.

Friday, August 12, 2011

My Blood Test Results Don't Make Sense

At the beginning of the week I had blood drawn and today I received a copy of the results. Some of the numbers were alarming and others had me shaking my head in disbelief.

The good news - most of the tests in my hepatic function panel (ALT, AST, GGT, etc.) are better than they've been in ages. Seriously? My liver is cirrhotic, but on paper, these tests indicate that it's doing fairly well (for me, that is - it's all relative).

Other results aren't so wonderful. My MELD score has increased to 12, a jump of three points in five weeks. The docs are chalking it up to an elevation in bilirubin and don't seem too concerned. I'm praying that it's not a trend.

Additionally, my doc is running more tests now, one of which is AFP serum (it indicates the presence liver tumors). The normal range is 0 - 8.3 and mine is 106.2. ONE ZERO SIX POINT TWO. Holy crap! My doc believes the number is elevated because of my aggressive Hep C, not because I have a tumor. Six weeks ago I had two CT scans and neither showed a tumor, which is a good sign. But I'd be lying if I didn't admit that I nearly fell off of my chair when I saw that result. I'm grateful that it had been explained to me before I saw the results.

Up next: More blood work in three weeks and an endoscopy (where a scope is run down my esophagus). And I'm not certain what else, but I'll keep you posted.

Photo by Heidi Marasigan

Thursday, August 4, 2011

Walgreens Came to My Rescue Today and Gave Me Great Customer Service -- United Healthcare's Specialty Pharmacy SUCKS

Nothing like a bucket of bad customer service to kick me out of my misery. Today, Walgreens was able to solve a problem in about ten minutes that UHC's in-house specialty pharmacy hasn't been able to fix in a week. My local Walgreens pharmacy has come through on so many issues - large and small - over the years that I am VERY pleased to brag about how good they are.

Conversely, there are a couple of meds that I'm required to order through my United Healthcare's (UHC, my health insurance provider) own specialty pharmacy. Although I've spent at least about an hour each day talking to a customer service rep trying to fill the order for my immunosuppressants, the matter is unresolved. Each person was nice, but no one got the job done.

At this point, the whole matter has become a comedy of errors and UHC looks like one of the worst-run companies aaround.

Walgreens, however, has been awesome.

And someone at UHC is going to receive a phone call from me, and (forgive me) shit WILL hit the fan!