Friendship meets myelodysplasia head on

It was one of those career mornings. I had come to a Sunday morning meeting of the local Jewish War Veterans, of which I am a member. I had come to support the presentation being given by my patient and friend, Mel Cohen, who was three years post-stem cell transplant for myelodysplasia.

Thirty-three years ago, in 1977, I was chosen to be the president of a new local organization, the Monmouth County Jewish Family and Children’s Service (JFCS). The timing seemed opportune. The JFCS had hired Mel, a young social worker, as its executive director. Mel was doing a terrific job, busy expanding services and gaining community support. We worked closely together for two years, and then I relinquished my position to a new president. Mel continued as director, successfully expanding the program to 10 times its size at its inception. We remained close, seeing each other at local functions over the years.

In 2002, he came to see me at my office. About a year earlier, he had been found to be anemic and was diagnosed with myelodysplastic syndrome (MDS). He had been followed by another hematologist for about a year. When treatment began to be discussed, he came to see me. I started him on weekly epoetin alfa (Procrit, Amgen).

Arthur Topilow

By 2004, it was obvious to both of us that he was not doing well. I learned that Louis Silverman, MD, at Mount Sinai Hospital in New York City was running a clinical trial of azacytidine in MDS patients. I called Dr. Silverman, and Mel was enrolled in his program. At that time, Mel required an occasional red cell transfusion, and his platelet count was in the 30,000 range. His marrow showed 12% blasts.

By his sixth cycle of azacytidine, in December 2005, his hemoglobin was 5.5, and he required frequent transfusions. He was hospitalized several times for fever and leukopenia. When he was discharged, he was started on another clinical trial with a combination of azacytidine and MS 275, an investigational drug without a name. One complication followed another: a rectal abscess, a herpes simplex infection, and hematuria from kidney stones and thrombocytopenia. By February 2007, he had been given at least 150u of blood and an equal number of platelet units.

We reached a point where we knew that to continue on the same therapies was futile. Mel asked me what to do. We both knew the answer.

A new option

“Mel, at age 64, you are on the upper age limit for a stem cell transplant, but you are well enough. You need to do it. There is no future existing on red cell and platelet transfusions,” I told him. He agreed.

It took several months, but a donor was found, and the transplant was performed in March 2007. Mel described the events:

“I was shocked, frightened and confused. I asked few questions, as I was in major denial. When my doctor informed me that he had searched the National Bone Marrow Registry and had found a ‘perfect match’, I replied, ‘Let’s do it!’

“In March 2007, I was admitted to Mount Sinai Hospital in New York and after three days of chemotherapy, which was used to destroy my own immune system, I received the donated stem cells in a packet the size of a CD case. The transplant experience was a nightmare. I was isolated in a space 10 × 15 feet, with no bathroom, and only a plastic and cloth curtain separating me from the nurses’ station. My body was wrecked by three days of chemotherapy, and I could not wash or dress myself. I could barely lift myself out of bed. Whatever dignity and control I had left was lost during this hospitalization. If it were not for a wonderfully supportive wife, Sandy, and my family, along with knowledgeable and compassionate nurses and doctors, I do not believe I could have survived. After three weeks, I was released from the hospital and placed on large doses of many medications. A long and slow period of recovery followed.”

About a month after the transplant, I saw Mel in the emergency department after he had several seizures at home. It did not look good, but the seizures turned out to be due to cyclosporin and posterior reversible encephalopathy syndrome. The cyclosporin was stopped and Mel recovered. He has had normal counts since the transplant and, aside from the graft-versus-host skin reaction, he has been well. He is presently getting photopheresis for GVH disease and phlebotomy for hemosiderosis.

Last summer, my wife, Judy, a pediatrician, and I attended Mel’s birthday celebration at a restaurant on the beach in Long Branch, N.J. He came up to me, gave me a big hug and introduced me to his family. Judy took care of his children, and now his local grandchildren. One year after the transplant, he was asked by his Mount Sinai doctor if he would like to meet his donor. He was too weak at the time.

“On the second anniversary of my transplant, I was asked again to meet my donor, and this time I was ready,” he told me. “Two days later, I got a call from the executive director of a wonderful organization called the Gift of Life Bone Marrow Foundation. The director, Jay, explained that my donor was recruited by the Gift of Life through a synagogue drive. Jay wondered if I would be willing to meet my donor at their annual Gift of Life Dinner in New York this past May 14. Without hesitation, I said, ‘yes.’ Little did I know what I was getting myself into.

“I learned that three transplant recipients and donors would meet for the first time on the stage in front of several hundred people. My wife, Sandy, my children, grandson, and nieces and nephews attended with me. When I entered the ballroom at the Marriott Marquis hotel, I saw more than 800 people in attendance, a huge stage with intense lighting and two enormous TV screens flanking the stage. I was so glad Sandy was on stage with me because my legs were literally shaking.

“My donor was introduced, and out of the dimly lit room, I vaguely saw a young man making his way to the stage. Needless to say, Matt, my 32-year-old donor, and I hugged and kissed, and he gave a tearful speech in front of this huge audience. I followed with my speech. The shaking stopped, as I felt I was talking to a room filled with my closest and dearest friends, all 800 of them!

“Sandy and I met Matt’s family and were invited to Matt and Randi’s home one month after the dinner. He told me that he was called to donate his stem cells two months before their wedding date, and when he asked his intended bride if this was ok with her, Randi immediately said, ‘You must do this!’ I thanked both of them many times in words that can never adequately say, ‘Your generosity saved my life!’”

Returning the favor

Mel has since spoken to other local organizations about his transplant and has become a spokesman for the Gift of Life Bone Marrow Foundation, where he has been charged to set up a New Jersey chapter.

In Mel’s words, “The Gift of Life Bone Marrow Foundation is the only donor registry in North America dedicated to recruitment within the Jewish community, adding much needed ethnic diversity to the overall donor pool. There are 150,000 potential donors in its database, and it estimates that with an additional 150,000 donors, it can successfully match 80% of patients who are eligible for a transplant. The Holocaust destroyed blood lines, making it even more difficult today to find a match for an Ashkenazi Jew. Today, over 30% of patients eligible for a transplant are unable to find a suitable donor. As many as one in 200 Americans will receive a transplant in their lifetime. Since 1991, Gift of Life has facilitated over 2,000 transplants for children and adults in dire need.”

At the local Jewish War Veterans meeting, Mel explained to the people in the audience how easy it was to be tissue typed with buccal swabs.

“The only thing that needs to be extracted is $54 from your wallet,” he said.

I explained how stem cells are now harvested by pheresis, as opposed to the older and now obsolete method of invasive bone marrow collection. The audience breathed a collective sigh of relief. What a great morning! What could be more rewarding in our profession than to steer a patient from certain death, have him return as a productive member of society, and for me to be publicly acknowledged for my role in his care in my own community, all the time retaining an old friendship.

Arthur Topilow, MD, FACP, is Director of the Section of Hematology/Medical Oncology at Jersey Shore University Medical Center and maintains a private practice at Atlantic Hematology & Oncology in Manasquan, N.J.