Leukemia's Lionheart: The Fight of a Lifetime

Started by anonymous, October 21, 2015
7 replies for this topic
anonymous

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Posted on
October 21, 2015
In January 1995, on a wintry Michigan morning, I swung by an Air Force clinic on my way to work to pick up some test results taken before the Christmas holidays to pinpoint the root of my back pain. The doctor’s urging to come have a seat on the couch in his office as well as his solemn facial expression made me feel a bit uneasy.

The doctor proceeded to tell me a herniated disk caused the back pain. The tests also revealed that I had chronic myeloid leukemia (CML) and that CML patients had a three-year life expectancy, unless they had a bone marrow transplant. He furthered explained, that with a bone marrow transplant, I had a 50/50 chance of a cure, but my body could reject the donor’s marrow and I could die from the procedure. I asked him why he didn’t call me to come in earlier.

“I didn’t want to spoil your holidays,” he responded. At this point, I felt like I was underwater, sinking further down into the couch, as I listened to the doctor’s voice, which floated towards me in sluggish and muffled waves. Coincidentally, I heard a thumping noise drumming in the background. I glanced to the side, realized the thumping was the second hand ticking on the wall clock. My world had changed in a matter of seconds.

Thoughts of my five-year-old daughter raced through my mind. After counting and re-counting, I concluded that in three years, she would only be eight years old. She still had one training wheel on her little pink bike that she got for Christmas and my wife and I were teaching her how to ride it. Blindsided by this diagnosis, a 37-year-old Army major at the time, I wondered if I would make it to my 40th birthday.

As I left the doctor’s office, somehow I did not feel the back pain anymore. Cars were still going up and down the street as usual, and there I stood like a deer caught in the headlights of an incurable diagnosis. I felt like I had a losing lottery ticket, but I needed to recheck the numbers because my luck couldn’t be this bad. I agonized over how I was going to break this news to my wife and my mother.

Unwilling to accept the diagnosis, I asked the Army to fly me to the Walter Reed Medical Center, in Bethesda, Maryland, for a second opinion. In my state of denial, I was seeking someone to dispute this diagnosis; unfortunately, Walter Reed confirmed the diagnosis. I then started CML treatment — daily injections of interferon until I could find a marrow match.

Things continued to spiral downward. My first disappointment came when no marrow matches were found among my relatives. Further, no one on the national marrow registry matched me. Even more disheartening was the fact that marrow matches come from someone within the same ethnic group and very few minorities were on the registry.

I contacted the American Red Cross to tell them I wanted to start doing marrow drives. The Red Cross sent me a letter stating that no one had ever found their own unrelated marrow donor and suggested I should spend my time adjusting to the medical treatments, but if I wanted to proceed, they would be happy to work with me. While in Bethesda, I stopped by the Department of Defense (DOD) Marrow Foundation, to enlist their aid in setting up a marrow drives within the military. Although I would have preferred to fight this battle quietly with conventional chemotherapy and radiation, I sensed that my situation meant I was being called into the marrow recruitment arena as a spokesperson and educator.

For the marrow drives, I lent my face and my time to these marrow organizations. They, along with my friends and family started hosting marrow drives. At the first drive, which my co-workers organized, 350 people, including the doctor who first diagnosed me, gave blood samples. We did drives basically everywhere — college campuses, military bases, malls and churches, among other places. My daughter, at one of the drives, exclaimed, “Daddy, I can’t see why you can’t find a match. All the blood looks the same to me.”

While very few in the community had heard about bone marrow transplants, they really gave me overwhelming support. I would look out the window and see a neighbor’s teenage son cutting my grass, people would bring us home-cooked meals, a local chiropractor told me to come in as often as I wanted to fix my back and I also had friends who did marrow drives for me in places like Hawaii, Germany, and even the Pentagon. By 1996, I had medically retired from the Army, moved to Atlanta, and was still involved with marrow recruitment, as my health allowed. The Red Cross recruiter would come by the house and pick me up early in the morning. We would do radio and television interviews or we would drive for hours to meet with a company to set up a drive or educate some fraternity late into the evening about marrow donation. In addition, the DOD would fly me to different bases to help recruit donors and tell my story.

That year, I went to a marrow drive that my aunt had organized, about two hours away, in Columbus, Georgia. Upon arriving, I heard that a local well-known businessman, a stranger to me, had come in earlier and was looking for me but had to leave. About an hour later, he came back and had this intense look in his eyes. We grabbed a table off to the side. He told me he had seen the TV promotions I did for the drive. He proceeded to tell me his story of having hairy cell leukemia and being near death, but the doctors at the MD Anderson Cancer Center turned the leukemia around.

Although praising the life-saving efforts of the marrow drives, he added, “But YOU need to get to MD Anderson ASAP.”

As he left, he stressed “one cancerous cell becomes two, two becomes four, four becomes eight, and so forth.”

He then handed me a card with the contact information for MD Anderson. I called the number and, miraculously and almost simultaneously, my future nurse and doctor answered the phone; something that never happened again in my twenty years as a patient. After our conversation, it was decided that I should definitely go to MD Anderson. A few days later, I was on my way to Houston, Texas, on a corporate jet, courtesy of the Corporate Angels. When I met my doctor at MD Anderson, I discovered he was the first doctor to use interferon for CML, which was the first-line therapy at the time. He carefully reviewed my records and said, “We still have time. I’m going to increase your dose of interferon and put you on clinical trial after clinical trial.”

During this time, I also continued my involvement with marrow drives. Although thousands of people were added to the marrow donor list, and donors were being found for others, I could not find my own donor, as was made clear to me three years earlier. The DOD even flew me up to MedStar Georgetown University Hospital in D.C. to be with my best Army pal as he donated marrow. Although he joined the marrow registry in hopes of helping me, he ended up matching and donating to a complete stranger. I was proud of my friend. His compassion was first class and he went up another notch in my book.

As time was ticking down, I became very frail and fatigued. The interferon, as well as other experimental drugs, had stopped working. I would wake up in the morning feeling like I never went to sleep. With hope diminishing, I asked my doctor when a new drug was expected. He said a drug called STI571 was close and that I would be the first patient to try it at MD Anderson. His nurse reminded him that he told someone else the same thing.

“OK, you’ll be number two.”

Finally, in August 1998, MD Anderson got approval to start clinical trials on STI571. Elated, I traveled back out to Houston and became the second patient at MD Anderson to use STI571. Only twenty patients could participate in phase I of the clinical trial and we had to remain in Houston for nine weeks.

I had amazing results with STI571, so much that in May 1999, I ran the Mayor’s Marathon in Alaska, and completed a 111-mile bike ride in Tucson in November 1999 for the Leukemia and Lymphoma Society’s Team in Training. For these events, I raised a sizable amount of money for future leukemia research. In April 2001, the FDA approved STI571, now known as Gleevec (imatinib). Currently, I am blessed to be the world’s longest living Gleevec patient.

My daughter eventually got the hang of riding that little pink bike and is in her fourth year of medical school, training to be a physician. I would like to thank her, my wife of thirty years, family, friends, countless strangers, church family, the military, my cancer support group and the medical community for the overwhelming support they provided throughout my cancer journey.

They gave me hope — hope for a healing that I thought could only come from a bone marrow transplant. Instead, my healing came from a drug that was only a gleam in some researcher’s eye at the time of my diagnosis.
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Lilkao

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Posted on
October 27, 2015
I was diagnosed with CML in 2003 and put on Gleevec right away. It took us a while to figure out how to pay for it. Luckily we were able to find a foundation to help us.In 2014, we discovered that the Gleevec had damaged my kidneys. I was put on a different drug - Tasigna that we also had to find help to pay for. It seems to be working. Why do the cancer drugs cost so much?
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Patty

Member
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Posted on
November 29, 2015
I agree the price of these cancer drugs are bankrupting many. I was dx. with Leukemia in 1994 @ the age of 38, I worked in a top US Hospital in St. Louis, Mo., There was no drug for this. I was put on 10 million units of Interferon sub-q injections daily & hydroxurea which I took p.o. @ 800 mg. After beginning with the transplant team and signing to be in the B< Registry, I met with hesitancy when wanting to have blood drives. Though, they usually do not test a potential donor under the age of 18, my 3 beautiful children, 8, 10 & 15 were tested though as expected, no match, but it would have been slim odds if one had been a match. Over the years I have accepted everything that I was angry or in denial about. What if my son had been a match, then something unforeseen went wrong, what would my son had felt? I don't believe it was God's plan. I was on the above drugs from 1994-2001. We carefully watched on C-Span of the progress of STI-571 & when it was passed, we felt as though we had all won life's lottery. I was always and still to this day thankful this was NOT one of my children. My Amazing Oncologist performed a BMB to establish a baseline, then Gleevec the next day. I was in REMISSION in 12 months (The first time I was tested after starting on Gleevec) The ease of taking 4 pills daily was so easy for me, though I've come to know others that had serious issues with Gleevec. All was well until 2010 when a BMB showed I was no longer in remission. So, the race was on, Fast Forward: My body had grown tolerant to the Gleevec, thankful there was no Tasigna which I am still on and still in REMISSION!!! I think with all my heart there are many Leukemia Miracles throughout out country. Have you ever contacted Novartis for help with the financial burden of paying for their very costly drugs. I contact any company that I am on any of their drugs for assistance. The worst that could happen is they say, No. Novartis is making billions on Gleevec, Tasigna & Sperycel. The Oncologist that has become Oregon State University Golden Boy for bringing Gleevec to FDA, He was actually a student of my Oncologist. Though My Oncologist is very humble, teaches @ Washington University in STL, Mo. and has put up with me for 21+ years as well as a full case load. His wife is also an Oncologist in the practice. No unknown Docs.He's truly my Hero!!! If you would like I can also make some inquiries for you. I assume the pharmacy where you get it has to order it special and drop ship it as mine does. God Bless, Patty
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mel-mann

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Posted on
November 30, 2015
Great Story Patty. Let's go for another 20+ years
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