Multiple Myeloma: Searching For A Cure

By Kaaren Valenta

Howard Bowles had a lot of work to get done around his new house before his scheduled knee surgery two years ago. So when he noticed a few sore ribs, he attributed it to some previous back problems and the pulling and heavy lifting involved with rebuilding a stonewall.

What the Newtown resident didn’t realize was that his ribs actually had multiple small fractures caused by multiple myeloma, a cancer of the blood plasma cells, which normally produce antibodies to help the immune system fight infection.

Multiple myeloma is considered an incurable cancer, but patients like Howard Bowles, who subsequently underwent a successful stem cell reinfusion in March 2003, are beating the odds.

“I never realized that I was sick,” Mr Bowles, 64, said. “One of the other symptoms of multiple myeloma is general weakness, but I never felt weak. I rebuilt a couple of stonewalls. There were just a few times when I felt a sharp pain in my ribs, something that did not feel like a pulled muscle.”

Multiple myeloma is the second most common blood cancer and the third fastest growing cancer in people ages 65 and under in terms of mortality, according to the Multiple Myeloma Research Foundation, which is based in New Canaan. This year 14,400 Americans will be diagnosed with multiple myeloma and 11,200 will die of the disease. The numbers represent only one percent of all cancers and two percent of all cancer deaths, however, so not much attention was focused on the disease until the past few years when a few well-known people contracted it.

“Mel Stottlemyre, the Yankees’ pitching coach, has multiple myeloma as does Don Baylor, the Mets’ hitting coach,” Mr Bowles said. “Geraldine Ferraro, the former vice-presidential nominee, has it. So does Dr Mel Goldstein, the television weatherman.”

An article in the July 12 issue of Sports Illustrated by columnist Steve Rushin, whose brother Jim has multiple myeloma, discusses the disease, which lodges in the bone marrow, and those who are struggling with it. The average life span of a person with multiple myeloma used to be about three years, but the use of high-dose therapy and stem cells has improved the survival rate of half of all patients to five years or more.

Today Howard Bowles shows no signs of the cancer, but it took a rigorous treatment to reach that point.

‘When I started getting multiple unexplained rib pains, I went to a chiropractor and he ordered a series of x-rays that showed a number of fractured ribs and possible compression fractures of the mid-thoracic vertebra,” Mr Bowles said. “That was two years ago this month. So my primary care physician, Dr Martin Williams, ordered a bone scan.”

Mr Bowles also was planning to donate a unit of blood that would be available during his scheduled knee surgery, but a pretest showed anemia. Additional blood tests showed that the protein level was high and pointed to multiple myeloma.

“Dr Williams referred me to an oncologist/hematologist, Dr Martin Abrams, at the Praxair Cancer Center at Danbury Hospital,” Mr Bowles said. “On the same day that I was supposed to have knee surgery, I was at Danbury Hospital getting a port-o-cath in my chest so I could start chemotherapy the next day. I remember that [knee surgeon] Dr Teitjan stuck his head in and said ‘hurry up and get rid of MM so we can do the knee surgery.’”

Over the next three weeks, Mr Bowles had four in-patient chemotherapy sessions requiring a 96-hour hospital admission each time.

“They used three drugs — Vincristine, Adriamycin, and Decadron — in a program called VAD,” he said. ‘But by the beginning of November, they could see that the drugs weren’t really working so they sent me to Dr Dennis Cooper at Yale-New Haven. Dr Abrams and Dr Cooper worked out a new program because I had to have at least a 50 percent drop in the rate of protein before I could have the stem cell procedures.”

The new program involved taking Decadron every day by pill and on the fourth week undergoing an in-hospital chemotherapy infusion of Etopocide, Cytoxin, and Decadron. He also had been taking zometa, to strengthen his bones; Procrit and neulasta for white cells; and even thalidomide, a drug that caused severe birth defects in the children of pregnant women who took it in the 1950s, but is now being used to treat metastatic melanoma, AIDS, and other diseases.

“I was only on thalidomide for ten days because I couldn’t tolerate it,” Mr Bowles said. “Then my temperatures went up and I was hospitalized for what turned out to be a kind of pneumonia associated with the chemo.”

But finally the new treatment worked, and Mr Bowles’ protein rate dropped low enough that he was judged to be ready to begin the stem cell procedure, which involved removal of blood stem cells (cells that can regenerate all of the normal blood cells), followed by high-dose chemotherapy to kill all the myeloma cells in his body, then reinsertion of the stem cells so that he would not be left without an immune system.

“The stem cell removal is called apheresis,” Mr Bowles said. “The cells are cleansed by machine and then frozen. They can be frozen indefinitely.”

The goal was 10 million stem cells — 10 units — but only 6.4 units were collected over the four-day procedure despite the fact that he was given neupogen between the sessions to stimulate production.

“I saw one patient from Sandy Hook who only had to go one day to give enough units,” Mr Bowles said. “Normally they want five units for reinfusion, and five as a backup in case they are needed later on.”

Patients who are unable to give enough stem cells have to look for a matching donor, a much more complicated and risky procedure. Fortunately, enough were collected from Howard Bowles that he did not have to seek a donor.

In March 2003, Mr Bowles underwent a two-day high dose of the chemo drug melphalin, and then he began the reinfusion procedure. “During the first day of the reinfusion, I had a strange feeling in my left eye. When I later saw an optomologist, I was told that it was eshemic optic neuropathy, probably caused by the myeloma, and not the stem cell reinfusion, although it seemed to start at that time,” Mr Bowles said. “It is permanent so I have a blind spot.”

Mr Bowles was told that after the procedures, he would begin to feel very sick, but would begin to feel better after about ten days. Instead, he developed a temperature and wound up in the hospital again because of an infection in the upper intestine caused by three antibiotics he was taking in conjunction with the procedure.

 “I was given another antibiotic to counteract that,” he said, “and was in the hospital about a week. But a few months later I was back to normal, and I have hardly any lasting effects. Since April 2003, I’ve been seeing Dr Abrams once a month for a blood test and an IV of zometa. My protein level is within the normal range.”

Howard Bowles and his wife Bobbe are longtime volunteers in the community. Mr Bowles was honored by the Family Counseling Center in 1997 for his years of service as an unpaid handyman and for years he has cut the Newtown Forest Association property at the top of Castle Hill Road, which gives the often-photographed view of the flagpole, and created four walking trails there. So when Bobbie McNamara, widow of attorney Paul McNamara, decided to sell her home that overlooked the field and the view, she offered it first to the Bowles family.

It was during the time of the move that Mr Bowles began to notice his sore ribs.

“Fortunately during the time I was getting the treatments, our daughter Abby, who is an attorney in Virginia, was able to come home and help,” he said. “She also did all the research on the Internet.”

Mr Bowles also discovered that many of his medical costs were covered by the military because he had sprayed the herbicide Agent Orange while serving as a pilot in the Vietnam war.

“They said it was possible that dioxin can cause multiple myeloma, since it also may cause some kinds of leukemia,” he said. “A small percentage of the people with multiple myeloma also develop a kind of leukemia.”

What Howard Bowles really would like is for more research into the disease, to find the cause and a cure. While the specific cause has not been identified, possible associations include a decline in the immune system, genetic factors, exposure to certain chemicals, radiation, and viruses.

“Only 14,500 people a year get multiple myeloma so it hasn’t been studied much,” he said. “In the early 1990s, a state senator from Connecticut had to travel to Little Rock, Ark., to get treated. But now many hospitals here can do almost all of the treatments except in extreme cases when the treatment doesn’t work.”

The Multiple Myeloma Research Foundation was founded in 1998 in New Canaan by twin sisters Karen Andrews and Kathy Giusti, after Kathy was diagnosed with multiple myeloma. As a volunteer-driven organization, 93 percent of funds raised by the MMRF are channeled directly into supporting multiple myeloma research and related programming. This year alone, the MMRF will fund $5 million in research grants, according to the foundation.

For more information visit the website www.multiplemyeloma, or call 203-972-1250, email info@themmrf.org, or write to the Multiple Myeloma Research Foundation, 51 Locust Avenue, Suite 201, New Canaan CT 06840.