My CML Cancer Marathon Is Just Beginning – This is How I’m Feeling

About 3,000 people over 55 are diagnosed with Chronic Myeloma Leukemia every year. As a result, it's not the type of cancer that most people are familiar with. None the less, I plan to give an update on my progress every few weeks in hopes that it, at the very least, inspires people to get their regular physical, and take advantage of early screening for cancer.

A brief rundown on the disease. Prior to 2001, survival of this cancer was not very promising. In that year, a treatment drug was discovered that was believed to be the miracle drug that would basically neutralize the disease. It did, and now today there are about 10 drugs that if taken daily, usually for the rest of one's life, life expectancy is as good as with a person who doesn't have the disease. It's really a miracle.

However, these drugs which are labeled oral chemotherapies, do come with some difficult side-effects, but nothing as bad as traditional chemotherapy. Today, there are enough drugs available, so that if one doesn't work well with a patient, there are others to try.

• Imatinib (Gleevec®)
• Dasatinib (Sprycel®)
• Nilotinib (Tasigna®)
• Bosutinib (Bosulif®)

There are three phases of this Leukemia, Chronic (which I am at), Accelerated or Acute, and Blast Phase. If Chronic goes untreated, it can turn into Accelerated Myeloid Leukemia. The goal is to avoid the Acute Phase, and the Blast Phase as each is more severe than the other (and more difficult to treat). The disease is basically caused by a chromosome (I have the Philadelphia Chromosome) that alters the body's production of white blood cells. These immature white blood cells continue to mount up in the blood and bine marrow and become cancerous. Chronic Leukemia does not spread to other organs in the body. The drugs that are taken to defeat (but not cure) the disease, eliminate these cancerous white (and sometimes red) blood cells. CML is never cured, but can enter into a clinical remission.

My Update

My blast cells are very low, which should allow for successful treatment. If I handle the drugs well, I should live a life with normal expectancy.

I was initially prescribed the TKI drug Sprycel. This is one of the original TKI drugs developed to fight this cancer. It comes with several possible side effects. I then agreed to become a part of a trial at Roswell Cancer Center in Buffalo. Last Friday, I began taking 80mg a day of a new drug, Scemblix. This drug is believed to be very effective, with fewer side effects and more people seem to be able to tolerate the medicine. Scemblix is approved by the FDA as a second-line drug for CML, meaning if a patient can't handle two of the earlier TKIs, he or she can be prescribed Scemblix. My trial offers this drug as a first-line treatment in an effort to prove that it should be a drug used first, right after diagnosis, like the other TKIs.

5 Days In

Life expectancy in 2024 is exceptional for people with CML. However, people who struggle with the disease and those who don't get positive outcomes often times are people who stopped taking the drugs prescribed. The most often given reason for discontinuing the medicine is that the patient struggled with side effects, often dealt with unbearable fatigue or other issues, and just didn't like the way the drug made them feel. My experience so far, albeit very early, has been a bit tough to get used to as the fatigue is quite chronic. My doctors started me off taking Scemblix in the morning. I'm now in the process of moving my dosage to the nighttime, this sleeping through part of the fatigue. One complication with this drug is that the patient must fast two hours before taking it, and one hour afterwards. Scemblix is also a very good drug when it comes to interaction with other drugs people are on for acid reflux, high blood pressure, etc.

Closing

The trial through Roswell in Buffalo requires regular exams and bloodwork for the first six months, with frequency reducing to monthly, and then every three months after about 6 months.

I consider myself extremely lucky. This cancer is treatable and should not kill me, and I simply have to work my way through the side effects. Sometimes the side effects dissipate over time. Sometimes the drug no longer works for a patient, and they are forced to try another TKI, until they find one that works. Overall, most people receive this drug very well.

CML is almost always discovered during an annual physical and bloodwork. I was lucky in that it was caught early in the Chronic stage. I plan to get through this introduction to the treatment, in order to live a long and healthy life.

Disclaimer: I'm obviously not a doctor and my column is simply sharing my personal experiences. It is always important to contact your physician for any medical advice. I hope this journal will help someone else that might be going through the same thing me and my family are going through.