Organ Transplant Recipients Twice as Likely to Develop Cancer, At Increased Risk of Developing 32 Types of Cancer

A study of more than 175,000 transplant recipients reveals their significantly increased risk of developing cancer, according to a study by the National Cancer Institute (NCI), part of the National Institutes of Health, that was published in the November 2, 2011 issue of the Journal of the American Medical Association.

A news release issued by NCI stated, "Organ transplant recipients in the United States have a high risk of developing 32 different types of cancer, according to a new study of transplant recipients which fully describes the range of malignancies that occur."

Researchers discovered that the most common cancers among transplant recipients were non-Hodgkin lymphoma, lung cancer, liver cancer and kidney cancer. Of particular interest to me was the following finding:

The risk of liver cancer was elevated only among liver recipients. Studies of cancer show, in this group, the occurrence of liver cancer can be partly attributed to recurrent hepatitis B or C infection in the transplanted liver, or to diabetes mellitus, which is also common among transplant recipients.

Organ transplants save lives, but there are numerous risks and challenges: Hypertension, diabetes (I was taking medication for these conditions almost immediately after my transplant), skin cancer (and 31 other types of cancer, according to this study), and much more. It's a lot to take on and for me, well worth it. But there's no denying organ transplants aren't for the faint of heart.

Photo by Johany López

The Effect of Cirrhosis on the Brain

Several months prior to my transplant I began experiencing "brain fog," or hepatic encephalopathy, which the US National Library of Medicine defines as, "... a worsening of brain function that occurs when the liver is no longer able to remove toxic substances in the blood." Among the symptoms are change in sleep patterns, mild confusion, forgetfulness, mental fogginess, personality or mood changes, and poor concentration. Symptoms may become severe and life-threatening.

What is the lasting impact of hepatic encephalopathy on the brain? Doctors in Spain and Italy conducted preliminary research on this topic in a study published in the September 2011 issue of Journal of Hepatology. Researchers used advanced magnetic resonance imaging and Voxed based Morphometry analysis to assess brain tissue density of 51 healthy subjects and 48 patients with cirrhosis.

The researchers reported the following results:

Patients with cirrhosis presented decreased brain density in many areas of the grey and white matter. The extension and size of the affected areas were greater in patients with alcoholic cirrhosis than in those with post-hepatitic cirrhosis and correlated directly with the degree of liver failure and cerebral dysfunction (as estimated by neuropsychological tests and the antecedent of overt hepatic encephalopathy). Twelve additional patients with cirrhosis who underwent liver transplantation were explored after a median time of 11 months (7–50 months) after liver transplant... Compared to healthy subjects, liver transplant patients showed areas of reduced brain density in both grey and white matter.

The doctors concluded, "... the loss of brain tissue density is common in cirrhosis, progresses during the course of the disease, is greater in patients with history of hepatic encephalopathy, and persists after liver transplantation."

This study isn't definitive, given the small sample size, yet should lead to further research. Nonetheless, it's troubling information for those of us with cirrhosis. At the same time, it explains a lot. When I become forgetful, I don't just have to use my usual excuses - advancing age, menopause - and can simply blame it on liver disease.

Image courtesy of The New York Public Library. www.nypl.org

Whew! My Lab Results Improve

Last week it was time to have blood work done again and I'm SO pleased to say that, for the most part, the numbers look much better. My MELD score, which was 9 two months ago and 12 last month, dropped to 8. What a relief!

My AFP test rose from 106 to 137, but I'm still not worried at this point. It would have to rise to the 400 to 500+ before I start wringing my hands.

My heptologist, a fabulous doctor, called me personally to tell me the results and discuss what's next. First, I'm going to take metformin again to help control my blood sugar. And in a month or so, I'll probably switch from prograf to cyclosporine. This change will make it possible for me to take one of the new Hep C meds, if they become available to transplant patients. I'm not sure whether I'll want to take the meds, but I'll ponder that matter if and when the opportunity arises.

In the meantime the docs will monitor my MELD score and AFP test results, and I'll be on the lookout for any signs of ascites (edema), varices (esophageal bleeding) and encephalopathy (I refer to it as "liver dementia"), which are indications of advanced cirrhosis. Mostly, though, I will enjoy this world and the people in it.

What I Wouldn't Give for a Good Night's Sleep...

Chamomile tea, a nice warm bath, counting sheep - when it comes to sleep, you name it, I've tried it. But insomnia still dogs me, as it has since I was diagnosed with end-stage liver disease and told that I needed a transplant. While everyone else slumbers, I'm awake and watching TV, tired but unable to sleep. Often, it isn't until 5 or 6 a.m. that I doze off, not restfully, feeling uncomfortable about all the things I'm missing as I sleep the day away... and then the cycle repeats itself.

I've come to learn that I'm not alone. A PubMed article, "Role of Sleep Disturbance in Chronic Hepatitis C Infection," posted on the National Center for Biotechnology Information, U.S. National Library of Medicine website, reveals the following:

Chronic infection with the hepatitis C virus (CHC) is associated with physical and mental symptoms including fatigue and depression that adversely affect quality of life. A related complaint, sleep disturbance, has received little attention in the literature, with the exception of sleep changes noted in cirrhosis and end-stage liver disease. We present an overview of studies indicating sleep problems in patients with CHC, with about 60% to 65% of individuals reporting such complaints. Evidence suggests that impairments in sleep quality exist independent of antiviral therapy with interferon-α and prior to advanced stages of liver disease. Further investigation of sleep disturbance in CHC patients with a mild stage of liver disease may provide important information on disease course as well as allow additional opportunities for patient support.

Unfortunately, there is no "cure" for insomnia; experts stress the importance of working with your doctor to find a solution. A Guide to Hepatitis C, Treatment Side Effect Management, is a fact sheet on the HCV Advocate website that offers basic suggestions to address insomnia, including the following:

• Make eight hours of sleep a regular habit. Sleeping less during the week and trying to catch up on the weekend doesn’t work

• Try to go to bed at the same time every night

• If you have a clock that is always lit, turn it so you can’t see the time

• Exercise every day

• If you nap, keep it short and early in the day

• Try reading before bedtime, but use a low-watt bulb

• Do not eat during the few hours before bedtime, but don’t go to bed hungry. If you eat something, choose food that is light and nutritious. Avoid spicy or greasy foods

• Take a hot bath before retiring

• If you feel you need to worry, tell yourself that you will only worry in the daytime. Make your bedroom a fret-free zone. Learn relaxation techniques to reduce stress and worrying

• Listen to relaxation tapes before retiring

• Do not lay awake in bed for more than 20 to 30 minutes. Get up, do something boring for a little while, and then go back to bed

• Your bed is for sleep and sex. If you are not doing either of these, stay out of bed

Hopefully, some of these tips will help. Here's wishing Sweet Dreams for us all.

Photo by Philippe Ramakers

What You Should Know About Liver Cancer

Hepatocellular carcinoma, or liver cancer, is something that's crossed my mind - wondering if I might ever have it - but I've never sought information about it, until now, that is. The US Department of Veterans Affair website offers information about liver cancer, including this list of "Things to know about liver cancer:"

* Liver cancer can cause death in a person with cirrhosis.

* Patients with cirrhosis resulting from any cause, including hepatitis C, hepatitis B, and alcohol use, have a greater risk of developing liver cancer.

* Liver cancer is one of the most common cancers in the world, especially in Asia and Africa, and it is becoming increasingly common in the United States.

* Biopsy refers to extracting a small sample of tissue with a hollow needle and testing it for liver cancer. A biopsy is sometimes needed to make a diagnosis, but imaging and blood tests can usually determine whether liver cancer is present. Biopsies of liver masses can be difficult to perform and there are some risks involved.

* Liver cancer can be treated if it is detected early, but the treatment is very specialized. Patients should discuss the details thoroughly with their health care providers.

* One excellent treatment for early-stage liver cancer is a liver transplant. This is a complicated form of treatment, because a patient first needs to be a good candidate for a liver transplant, then be evaluated at a liver transplant center and placed on a waiting list, and finally, be well enough to undergo a transplant when a donated liver becomes available.

According to the U.S. National Library of Medicine, which is overseen by the National Institutes of Health, "The (prognosis for liver cancer) is poor, because only 10 - 20% of hepatocellular carcinomas can be removed completely using surgery. If the cancer cannot be completely removed, the disease is usually fatal within 3 - 6 months. However, survival can vary, and occasionally people will survive much longer than 6 months."

Photo by Andrew Richards

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, www.fotolog.net/giovanella

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.

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

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!

No! I Wasn't Ready for This!

Nine.

That's my meld score. My transplant coordinator told me and my husband in early July, as my release from the hospital for hernia surgery was being coordinated. (It was repeat surgery to try to fix the incisional hernia that developed during my original transplant: The surgery didn't work then and doesn't seem to have worked this time, either. But that's another story.)

We had my surgeon do a liver biopsy while he was in the neighborhood, so to speak, and the lab review showed that my transplanted liver is cirrhotic. So my coordinator did some math and I'm a nine.

I've spent the past month trying to find a graceful way to share this news and I'm still struggling. The hardest part - and oh, my God it was so hard - was telling my kids. They are older teens, but they still need a Mom. It's almost certain that I won't be around long enough to see them graduate from college, or marry or have granchildren. That's just not fair.

There's also so much I want to do with my wonderful husband.

I'd handle this better if I could reach a point where I'd focus on the many tasks that need to be tackled, like a will and organizing papers. However, the past five weeks have been spend recouperating. Beyond that, I still can't talk about it without crying.

What about clinical trials? Those new Hep C meds? A second liver transplant? All very unlikely for many reasons, which I'll explain in future posts.

Please excuse the pity party. I'll find helpful info to share soon. I wish every person reading this blog good luck because there's a lot of it to be found.

Photo by Alaina Cherup

Not Again! The Itching is Back

About a week ago the palms of my hands began itching. My family and I were on a week-long roadtrip and I assumed it was due to the hotel laundry soap or lotion, perhaps a plant I had touched - who knows? But after a couple of days the itching spread and worsened and when I had bloodwork done this week, the mystery was solved: My bilirubin is high and I'm experiencing pruritus.

I struggled with this four months ago. Fortunately, after a few weeks my bilirubin level decreased (and finally fell into normal range) and the itching went away... until now.

There are few things more frustrating than non-stop itching. I have spots on my body that are red and irritated from scratching and I'm starting to get a bit grumpy. Ugh! I'm having hernia surgery in four days and can't imagine the combined pain-itching experience afterward. This could be interesting... and not in a good way.

Photo by SuperFantastic

Saving Your Liver May Cost an Arm and a Leg

As noted in my most recent post, the FDA has just approved two new medications to treat Hepatitis C: Incivek (Vertex's telaprevir)and Victrelis (Merck's boceprevir). According to www.drug.com, Dr. Douglas Dieterich, a professor of medicine in the division of liver diseases, at Mount Sinai School of Medicine in New York City, said that the approval of Incivek and Victrelis "represent the first real advances in the treatment of hepatitis C in 13 years."

This advancement is the best news Hep C patients have received in years - but celebrations may be premature. The astronomical costs of these meds could be an overwhelming barrier to treatment.

A May 25, 2011 post on the HBV and HCV Advocate Blog featured the Fair Pricing Coalition's stance on the price set for Incivek:

...the Fair Pricing Coalition (FPC) is appalled at the price set by Vertex for Incivek,” said FPC member Lynda Dee. “The FPC is concerned that the exorbitant wholesale acquisition cost (WAC) of $49,200 per 12 week course of Incivek treatment will adversely affect the ability of people with HCV to access this new drug and that it will also set an excessively unreasonable future price point for the many HCV drugs in the pipeline.

“Merck’s Victrelis costs $48,400 for 48 weeks of treatment. Now Vertex has set a price approximately four times greater than Victrelis for twelve weeks of Incivek treatment. While we welcome a shorter course of Incivek treatment, both price points are outrageous.

The FDA label recommends that 12 weeks of Incivek be taken with pegylated interferon and ribavirin for either 24 or 48 weeks, depending on a patient’s response to the regimen. The WAC price for 48 weeks of HCV treatment with pegylated interferon and ribavirin is approximately $30,000. The $49,200 WAC price for 12 weeks of Incivek will more than double the already exorbitant 48 week price of pegylated interferon and ribavirin.

The FPC also cites an expected "...30% increase in the cost of treating side effects caused by use of the new HCV protease inhibitor drugs."

More information is available in the story and at http://fairpricingcoalition.org/.

Just last night I watched a television news show about the high quality, low cost health care available in Thailand, where hospitals are actively working to attract patients from other countries, including the US. My heptologist traveled there earlier this year and also commented on how good the health care is. Maybe we should move?

Photo by Marc Garrido i Puig

Great News for Hepatitis C Patients (Well, for Some of Them)

Along with other people infected with the Hepatitis C virus, I was elated when the FDA approved two new medications - telaprevir and boceprevir - both of which have proven much more effective in achieving sustained virologic response (SVR) than the current course of treatment. For people like me who have genotype 1 Hep C, the hardest to treat, the news is especially good.

Yet I just learned that treatment with one of these new medicaations may not be in my immediate future, if at all. Turns out that immunosuppressants have a negative interaction with the drugs, so liver transplant patients with Hep C can't tolerate them; at least, not for now.

Well, this just sucks. For five years we've waited for these drugs to reach the market, hoping that this would clear my Hep C and give me a chance to be realistically hopefully, and seriously consider the future, make plans, expect to be around for a good long time, enjoy some grandchildren.

But right now, the future just seems dark.

Photo by nikstyles

There's a What?! in My Ear?

Back in January I had an ear infection. It seemed silly to have this childhood illness at 51. But I've had chronic problems with my left ear since the age of two (I call it my "Achilles Ear"), so I shrugged my shoulders, saw an ENT, took the prescribed antibiotics and ear drops and assumed all was fine.

Two months later the infection was back. This time I called my primary care doctor, who phoned in an antibiotic and ear drops. Again, it cleared up.

Yet two weeks ago, the ear infection appeared for the third time. Obviously, this is a problem that needs more attention. Back to the ENT, who did a culture. Yesterday the nurse called and said the doctor wants me to use the ear drops only. Oh, and she also said that I have a staph infection.

Whoa there! Staph? That's not good. I realize staph is found on our bodies and one study I found showed that 15 percent of ear infections are caused by staph. But I'm immunosuppressed, which makes me a tad bit worried. I can't find anything online that explains what happens to people like me who have staph infections.

Tomorrow I'll talk to the ENT's nurse again, to learn what type of staph was found. Then I'll call my transplant center and, hopefully, find out what this means and what must be done to resolve the problem so it doesn't recur.

Photo by Robert S. Donovan, www.everystockphoto.com

Scanned, Poked and Prodded

It's been quite a month! April is the month when I have my annual medical check-ups. So far I've had a mammogram and my teeth cleaned, and soon I'll see the opthamologist and dermatologist. I also had a bone density scan (my first).

As I type this, I'm preparing for what's probably my least favorite scan: Colonoscopy. And by preparing, I mean that I'm gagging down pints of MoviPrep and running to the bathroom. I received helpful advice from a friend and have kept the liquid very chilled (I poured it over ice in a glass before drinking) and chugged it through a straw (so I don't taste it too much). The silver lining in this cloud, besides news of a healthy colon, should be a temporary (at least) loss of weight.

After this thorough medical survey, I wonder: Why do mammograms have to be so uncomfortable? And why must prepping for a colonoscopy have to involve such a vile tasting liquid? When you consider the advances in science and medicine, these unpleasant experiences seem unnecessary.

Oh, well. Gotta run (pun intended).

Photo by Jyn Meyer

Small Signs of Progress

In a sure indication that I'm recovering from the rejection episode I had last August, this week I discontinued two of my medications and decreased the dosage of another. Cartwheels!

I don't have words to express how tired I am of taking meds. One of my prescriptions requires me to take four capsules twice a day; another is three tablets twice daily. Then there are the rest of the prescribed meds and vitamins and the whole diabetes/insulin routine. The yearly cost, even on our prescription plan, is close to $2,000.

Don't get me wrong: I realize the meds are important. And I'm taking far fewer pills than I did immediately after my liver transplant (64 pills each day back then). Managing them, however, is tough because I work with three pharmacies, and at times the meds and/or dosages change weekly.

To me, fewer pills means progress, and progress makes me feel hopeful. Hooray!

Photo by Marek Bernat

Lab Results Hold Steady - My Hepatitis C "Break" Continues

Yee haw! My lab results were decent - very comparable to my last set of labs in February - so I don't have to have blood drawn again for a month. That's FOUR WHOLE WEEKS!

Last year I'd guess that, on average, I had blood drawn every week-and-a-half. That's a lot of pokes with needles, including my record-setting lab visit at which nine tubes of blood were drawn.

I'm delighted and grateful for the continued break. My goal is to live in the moment and simply "be."

HUGE News for People with Hepatitis C

Quadruple therapy shows 100 percent SVR for HCV patients previously unresponsive to treatment

This news is incredible, jaw-dropping and fabulous! A new Hepatitis C treatment is 100 percent effective. A weekend post in the HBV and HCV Advocate Hepatitis Blog described the research findings from a presentation at the 2011 European Association for the Study of the Liver conference:

In the quadruple therapy study, HCV patients were given four drugs in combination; pegylated Interferon-alpha (PegIFN-alpha); ribavirin (RBV); and two different direct-acting antivirals (DAAs) BMS-650032 (an HCV NS3 protease inhibitor) and BMS-790052 (an HCV NS5A replication complex inhibitor)...

Professor Heiner Wedemeyer, EASL'S Secretary General, said: "Quadruple therapy is possibly the future of HCV treatment; this study goes a way to confirming that. While it's expected that the first DAAs and triple therapy will be approved for use later this year, quadruple therapy appears to have a more profound effect on virological response, with less of a resistance problem."

The study may also provide new hope for a growing number of HCV patients who cannot be effectively treated for chronic hepatitis with current treatments.

The blog post didn't indicate when the four-med therapy will be available, but I'm hoping it's very soon. And this is news that I'll be following with great interest.

Photo by Jayanta Behera

Taking a Break from Chronic Illness

Hepatitis C is a chronic illness that, like so many other diseases and conditions, requires a great deal of time and attention: Doctors visits, lab work, medication regimens, medical procedures, research and more. I refer to it as my full-time job, which isn't far from the truth. Factor in the time required to review and resolve billing and insurance issues, and it's been a job-and-a-half.

Given the time, effort and stress related to my "job," it's important to take a break from time to time. And for the past six weeks, since I met with my heptologist, I've done just that. No labs, no conversations with my transplant team, no med changes.

Ahhhh.

Tomorrow all of that changes when I go to the lab and the vampires have their way with me and my poor worn-out veins. Then I'll nervously await a call from my transplant center with the results and we'll debate whether I need another liver biopsy now or if the condition of my liver seems stable enough to wait it out until one of the new Hep C meds is available this summer. A lot is riding on the outcome of these labs - yep, my break most definitely ends tomorrow.

Photo by Sinan Acar

My Doctor is Better than Your Doctor

I'm grateful to have a wonderful heptologist. OK, maybe you have a great doctor, too. But mine's best and here's why:

* She keeps abreast of the latest research and advances in her field

* She understands the dilemma her patients face when it comes to healthcare and health insurance

* My doc thinks outside the box and will consider alternatives that her peers might consider unconventional

Last month my husband and I had an appointment with my doctor and she spent at least 30 minutes with us discussing results from recent bloodwork and my liver biopsy in January. The current state of my liver and hep C have created a complicated scenario where there isn't one quick, obvious or easy plan of treatment. But I'm confident that I have the right expert guiding us on this crazy journey.

Thanks, Dr. S., for everything.

Photo by LotusHead, www.pixelpusher.co.za

This Itching Is Driving Me Nuts!

I can't stop scratching! My arms, back, feet, stomach, scalp - you name it, I've scratched it until it's red and sore. I've taken to wearing my pajamas inside-out, because the tiniest bit of rough edge along the seams is too itchy. My family can't stand it and neither can I.

I have pruritus, which is an extrahepatic manifestation of Hep C. According to a fact sheet at www.hcvadvocate.org...

... Pruritus is one of the most common symptoms reported by people with hepatitis C (20%), but is more commonly found in people with advanced liver disease and cirrhosis. Pruritus is itching that may be localized to a specific part of the body such as hands and feet, but it can also be a generalized itching all over the body. Some people even report that it feels like their internal organs itch. Pruritus can be related to high bilirubin levels, autoimmune disease or dry skin, and can be a side effect of treatment. Use of moisturizing lotions, oatmeal baths or lotions, antihistamines, and cortisone creams and opiate drugs can help.

I scratched myself all night, so I'm going to slather on some moisturizer and try to take a nap now. Fingers crossed.

Photo by Orrling

FDA Gives Two New Hep C Medications Priority Review Status

Back in 2006, when I had my liver transplant, the heptologists at my transplant center told my husband and me that a new medication for treating Hepatitis C was in clinical trials and would be available the following year. We heard the same news in 2007, 2008, 2009 and 2010. Our skepticism is understandable, don't you agree?

Yet it appears that in 2011 our long wait will end. The FDA is giving Priority Review status to telaprevir, which was developed by Vertex Pharmaceuticals for people with genotype 1 chronic hepatitis C. In addition, Prioirity Review has been given to boceprevir, an oral hepatitis C virus (HCV) protease inhibitor developed by Merck.

The FDA gives Priority Review designation "...to drugs that offer major advances in treatment, or provide a treatment where no adequate therapy exists... The goal for completing a Priority Review is six months." The target review date for telaprevir is May 23, 2011 (I could not find a review date for boceprevir).

Both medications show better cure rates and, for some people, reduce the treatment time. Furthermore, they will be the first drugs that directly target the Hepatitis C virus.

I don't know how quickly the drugs will reach the market after FDA approval but I hope it doesn't take long. My poor liver has taken enough abuse from this devastating virus.

Photo by Nina Briski

Genetic Research and Treatment for Hepatitis C

When my doc told me that she was adding a genetic test to my standing lab work order - specifically, to identify the IL-28B polymporphism - I didn't have a clue what she was talking about. I was unaware that genetic testing was being conducted on Hepatitis C issues. Go, researchers!

Studies on this topic were released at the 2010 Annual Meeting of the American Association for the Study of Liver Diseases (AASLD) held last Oct./Nov. in Boston. In its coverage of the conference, www.hivandhepatitis.com provides a solid overview of IL-28B:

The IL28B rs12979860 SNP has 2 variations, or alleles, "C" and "T." Hepatitis C patients with the homozygous or matching C/C pattern (2 copies of the "C" allele) are most likely to spontaneously clear HCV and have the best response to interferon-based therapy. People with the T/T pattern (2 "T" alleles) have the least favorable response, while those with the heterozygous or mixed C/T pattern (1 copy of each variation) fall in between.

It appears that doctors will increasingly rely on the this test as they determine treatment strategies for Hep C. Such is the case for me. The test revealed that I am C/T. Given the outcome of my biopsy and this blood test, what treatment will be best for me? I'll find out in two weeks when I meet with my doctor.

Oops. I Spoke Too Soon

The full report on my biopsy is in. There's good news and bad news. The good news: As I noted in my last post, the fat in my liver has virtually disappeared. The bad news: Everything else.

In biopsies, liver condition is measured by grade (the extent of the disease or inflamation) and stage (amount of fibrosis, or scarring). In June 2010 my liver was grade 3 (on a scale from 0 - 9) and stage 3 (on a scale of 0 - 6). Note: Stage is commonly measured on a scale of 0 - 4; my transplant center uses a different scale.

Now, my liver is grade 9 (!) and stage 4. This sucks. A lot.

I'm having a little trouble coming to terms with this news. I'm scared. And I'm fresh out of suck-it-up. But in a day or two I'll feel better and can start working on the next thing, which apparently is IL-28 phenotype, whatever that is.

Photo by Julia Freeman-Woolpert

At Last! Biopsy Results that Seem Promising

Last week I had my third liver biopsy in seven months (for those who are unfamiliar, this number is well above average). The past two showed troubling results and I'm greatly relieved to receive better news this time around.

Regarding the presence of fat in my liver, I quote: "GONE :)"

That sigh of relief you heard was mine!

My liver biopsy in June 2010 showed 80 percent - 80%! - fat in my liver, which is very unhealthy and also is an inidcator of metabolic syndrome. My docs told me to lose weight and control my blood sugar better, and I did. Even hampered by the steroids I had to take after my rejection episode, which made it very tough to follow doctors' orders, I was able to keep off the weight I initially lost (the blood sugar was beyond my control, however). Nonetheless, it worked!

The lessons: Follow doctor's orders. Hope for the best and stay as positive as possible. Don't give up.

Image courtesy of DiabetesMonitor.com

Sometimes I Get Depressed

Please pardon my absence. The past three months have been busy, but enough of that - it's time to blog again.

As of my last post, I'd experienced a rejection episode and was working with my docs to recover from that. Although I expected to have all that behind me by now, some of the challenges continue today. My blood work results are finally beginning to show real improvement, except that my bilirubin level still is not in the normal range.

It's taken a mountain of medication to get to this point. I've stopped, started and adjusted more meds than I care to count. Although I was initially expected to have discontinued the prednisone by now, I continue to take a small dose daily. I'm also taking CellCept. Additionally, my potassium and magnesium levels are low and I'm taking meds for that. In a nutshell, taking meds is like eating a small meal. And then there are the 4 or 5 insulin injections daily...

This frustrating regimen, which has been VERY slow to work, combined with the stress of the holidays has left me blue. I'm depressed. I hate feeling like this: In fact, last week I was in tears for several days. What the... ?! This week I was determined to turn the corner, so I created a "to do" list each day. Every item I crossed off was an accomplishment (something I had control over!) and the sense of satisfaction has been very helpful. Tomorrow I'm going to get a pedicure as a reward. I'm also going to try to get a little exercise.

I'm also going to do more blogging. A number of interesting research projects have recently been published and as I read up on them, I'll share what I learn.

Photo by Mattox