Understanding Jeannie`s cancer, APL - WREX.com – Rockford’s News Leader

Understanding Jeannie`s cancer, APL

Jeannie Hayes with her niece Tess. Jeannie Hayes with her niece Tess.
APL cancer cells. APL cancer cells.
Dr. Wendy Stock Dr. Wendy Stock
Mike Livorsi with his family. Mike Livorsi with his family.

As you know our beloved colleague Jeannie Hayes died from a rare form of leukemia earlier this month. What you might not realize is she never even knew she had the disease. She was diagnosed after she went into a coma and never woke back up. 13 News wanted to know more about her disease to find out what could have made the difference not just for Jeannie but for you as well.

In the past few weeks we have become very familiar with acute promyelocytic leukemia (APL). Before Jeannie's death many people, even in the health care field, had not heard of APL because you are more likely to get struck by lightning than end up with the disease.

"This is a very rare disease. It is hard to get people to come to a doctor when they are young and feeling well otherwise. And it takes some sort of inclination to look for this problem and often people are very ill by the time they come to attention so the diagnosis may be made late and that's when people can die of the bleeding complication," says Dr. Wendy Stock, University of Chicago, leukemia program director.

That was the case for Jeannie Hayes who had been feeling relatively healthy until just two weeks before her death.  She told us at WREX and her family she had a fever but it went away.  Then the day before she went into the hospital she was diagnosed with a bladder infection, put on antibiotics and told to follow up with the doctor in a few days.

It was a very similar situation for Mike Livorsi who is an APL survivor.

"I got sick with a sinus infection and bronchitis went and saw my doctor and they prescribed some antibiotics," says Mike.

Dr. Stock says any kind of infection is very common in leukemia patients because they have low white blood cell count and have trouble fighting off infection. At that time Mike got a blood test but his count was not low enough to raise an alarm.  Even though his doctor told him to come back for more tests he would not return to his physician until three months later, time Jeannie never had.

"Unfortunately in a number of patients that develop APL the first manifestation can be bleeding and often times it does occur in the head, in the brain," says Dr. Mark Litzow, Mayo Clinic, acute leukemia director

The doctors explained in these types of leukemia cells there are tiny granules, like pieces of sand and as they rub up against other cells they can start a bleed.  In Jeannie's case it did happen in her brain.

"It is one of the more feared leukemia's in terms of the bleeding risks and unfortunately the first manifestation of this disease can be this bleeding. And often times it is so advanced we cannot control it or correct it," says Dr. Litzow.

Mike says he could have been in the exact same position but he had one thing going for him that Dr. Stock says she often does not see with young people, he had a primary care doctor that he visited regularly.

"I just wasn't feeling good, and I was feeling rundown and I knew it wasn't right and to me the key was having a doctor who was thorough and willing to follow up," says Mike.

Some of the symptoms of APL and other leukemia are easy bruising or bleeding. For women a very heavy or prolonged period.  Fevers, infections or pneumonia are common because of low white blood cells.  Also feeling very cold or rundown which are signs of anemia which most patients get from the drop in platelets.

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