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CML: I am the world’s longest living Gleevec, TKI, and Kinase Inhibitor survivor

April 12 2022 was my 65th Birthday! I Really Did Beat Those 1995 Terminal Cancer Odds!

I celebrate a milestone 65th birthday, after being diagnosed with #terminal #leukemia over 27 years ago. In January 1995, at the age of 37, I was given 3 years to live after I was diagnosed with a rare form of leukemia called chronic myeloid leukemia #CML which strikes around 9,000 people in the United States and 35,000 people globally each year.

 

I was an Army Major, Stationed in Detroit, Michigan, with my wife and five-year-old daughter. The only possible chance for a better prognosis was to find a bone marrow donor, which I NEVER found, despite conducting numerous #bonemarrow drives around the country and adding many thousands of people to the bone marrow registry:

(Video — World Record Marrow Drive, 10,675 people —).

 

In 1995, I only had less than a one percent chance to find a marrow donor to begin with.

In 1996, now medically retired and living in Atlanta, I started participating in clinical trials, with little success. At the same time, I was still fully immersed with bone marrow donor recruitment. In the summer of 1998, eight months pass my terminal three-year prognosis, supposedly with just months to live, I embarked upon a solo pilgrimage halfway across the country to a major cancer center for a 3 month stay.

I was to be the second patient to swallow a Hail Mary pill, which months before, had caused problems in the livers of lab animals but was just approved by the FDA, for a first-in-human phase 1 clinical trial.

For the phase one clinical trial in humans, they were assessing the safety, side effects, and best dose of the medication. The pill worked for my cancer which had been out of control. It did not work for the first patient, but it did for me.

Barely able to walk in the summer of 1998, I ran a 26.2-mile marathon, in Alaska, 10 months later, in the late spring of 1999. And then another 26.2 mile marathon in Vancouver, Canada, after cycling 111 miles in Tuczon, Arizona, all for the Leukemia & Lymphoma Society’s https://www.teamintraining.org/.

The pill, #Gleevec, was approved around three years after I started using it and after 1,100 patients had entered the clinical trial. The FDA approval date for public use was in May 2001. People stopped dying in three years from CML.

Gleevec (generic – #Imatinib) is used in other cancers also. It is a Tyrosine Kinase Inhibitor #TKI, the first drug of its kind. Kinase inhibitors, in general, are targeted drugs also used in other cancers such as #breastcancer, #lungcancer, #stomachcancer, #thyroidcancer, #GIST, #pancreaticcancer, #melanoma, #bladdercancer, #renalcancer, #myeloma, and on and on and on. They are also used in other non-cancerous illnesses such as #rheuthoidarthritis.

If you are one of the #millions of patients taking a #kinaseinhibitor (the last three letters of the generic drugs usually end in “nib”), you might be interested in knowing the first-in-human kinase inhibitor trial started that summer of 1998 with Gleevec.

When I swallowed that first pill, I did not know that Imatinib would be so historical over twenty years later. I do remember going to the research lab every hour for a blood test, needle tracks running up and down my arms, and the painful bone marrow aspirations (12 of them during the trial), to see how the drug was working.

The Gleevec lab was the ground zero of Kinase Inhibitors, the oncologic sub-four-minute mile, the one giant step for cancer.

Over 75 different Kinase Inhibitors have been approved by the FDA since then

Hundreds of Kinase targeted drugs are currently in clinical trials for illnesses such as autoimmune diseases, inflammatory diseases, #prostratecancer, cardiovascular diseases, central nervous system disorders, viral infections, malaria, #ALS#LouGehrig’s, #alopecia, etc.

Gleevec is the historical beginning of Kinase Inhibitors for clinical treatment in humans. Gleevec is even being investigated for #alzheimersdisease, #parkinsonsdisease and #diabetes treatment.

I am blessed to be the World’s Longest Living Gleevec (Imatinib), Tyrosine Kinase Inhibitor, and Kinase Inhibitor Survivor. Thank God for Clinical Trials.

 

I was also able to see my five-year-old daughter graduate high school, Harvard College, medical school, and become a physician. I thought my healing could only come from a bone marrow donor. Instead, my healing came from a drug that was only a gleam in some researcher’s eye at the time of my diagnosis.

Listen to that physician researcher, Dr. Brian Druker, MD, and I, as we discuss Gleevec 23 years later —


Read Transcript: https://thebloodline.org/TBL/100-e95/.

#ClinicalResearch #ClinicalTrials #CancerMoonshot

Clinical Research Papers

Cohen, P., Cross, D., & Jänne, P. A. (2021). Kinase drug discovery 20 years after imatinib: progress and future directions. Nature reviews. Drug discovery, 20(7), 551–569. https://doi.org/10.1038/s41573-021-00195-4

Druker, B. and others. (April 5, 2001). Efficacy and Safety of a Specific Inhibitor of the BCR-ABL Tyrosine Kinase in Chronic Myeloid Leukemia. New England Journal of Medicine, (344), 1031-1037. https://www.nejm.org/doi/full/10.1056/NEJM200104053441401

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Mel Mann
  • Mel Mann
  • Mel was diagnosed with chronic myeloid leukemia in January 1995 and given three years to live. The only possible hope for survival was a bone marrow transplant. Despite numerous marrow donor drives and adding thousands of people to the marrow registry, he never found a donor. Mel entered the phase 1 clinical trial of Gleevec (imatinib) in 1998. He is the world’s longest living Gleevec, TKI, and Kinase Inhibitor survivor. Mel continues to serve the cancer community as a patient advocate and volunteer.