Keeler Leukemia Update: My 6-Month Progress Report

It's hard to believe that I've now reached the 6-month point of my treatment for Chronic Myeloid Leukemia (CML) at Roswell Cancer Center in Buffalo. My family doctor here in Utica caught the abnormality during normal blood work back in May of last year. My white blood count was elevated and the disease was officially diagnosed by Dr. Samir Desai at the Utica Cancer Center a few weeks later.

I've promised to share my latest cancer experience in hopes of inspiring or at least reminding people to follow through on cancer screening, as recommended by their doctor. Based on my own personal experience, I feel that guys tend to procrastinate and avoid getting checked by their doctor and that error in judgement can almost certainly end up fatal.

During this article, I'll dig into my cancer journey, and detail the fact that my prognosis is currently excellent at the 6-month marker of treatment. I'll also share my experience with the disease, how it has affected me, the treatment, and side effects. One note that I'd like to convey is the fact that I could have received treatment here in Utica at the Utica Cancer Center, but because I tend to be sensitive to medicines, we determined I would be better served to be part of a clinical trial where I could take a medicine that is newer and claims to cause fewer side effects. I also hope this article can serve as a resource for others going through what me an my family have gone through over the course of the last 8 months.

My Brief Cancer History on How I Got Here

Let me start from the beginning, which actually started with another cancer diagnosis five years ago.

On December 14, 2018, at the age of 54, I was getting my first colonoscopy; something I had idiotically cancelled twice before. It turns out, I have a family history of colon cancer, so it's a test I should have gone through at age 45. Making matters worse, I had been experiencing symptoms that included blood during bathroom visits. A friend, Tim Reed of Utica Boilermaker fame, finally talked me into going through with the procedure, all the while he was receiving treatment for prostate cancer, which had been diagnosed for him back in August. Following my colonoscopy, the doctor said he felt things were normal but a biopsy was being sent out for testing. At this point, I felt that I had escaped a "close call" and I was walking away with a clean bill of health. Five days later, my wife and I were attending Rob Esche's Save of the Day Foundation benefit at the Adirondack Bank Center when I received the call that the biopsy came back positive for cancer. In January 2019, we traveled to Dana Farber Cancer Center in Boston for a second opinion, and soon after on Monday, February 11, I underwent a colectomy or colon resect where 11 inches of my colon was removed. The surgery was successful, and I currently remain free of colon cancer according to my most recent colonoscopy in November.

My Current Journey with Cancer

Leukemia is a pretty scary word. My wife and I decided we would seek treatment as part of a trial at the Roswell Cancer Center in Buffalo. After Dr. Steven Green (Oncologist) and his team conducted extensive bloodwork and a bone marrow biopsy, the diagnosis of CML was confirmed. I also qualified for and was accepted into the study which was researching the effects of using the drug Asciminib as a first line drug for treatment of CML. Previously, the newer TKI had been approved for patients who failed with older TKIs that were already approved for first line treatment. Asciminib is touted as a TKI that in most patients causes fewer side effects. This has been something I have experienced while taking this medicine. While there are side-effects, the medicine has brought my blood levels to within normal levels. The medicine has successfully shut down the over-production of these white blood cells that mutate into cancer cells. I have been told that after three years of treatment, depending on the progression of the disease, I may be given the option of stopping the medicine. However, I may also be given the option or recommendation to stay on the medicine for the rest of my life in order to keep the disease under control.

CML at My 6-Month Marker

My personal experience is that as the cancer production was stopped or "turned off" by the medicine, many of my symptoms have subsided. I'm told my blood levels are now normal, so much so that my current blood work shows no cancer abnormalities. This is a result of taking the TKI medication, which I suspect I will take for the rest of my life.  However, the most difficult side effect that I still struggle daily with is chronic fatigue, which can be debilitating. Coffee, soda and espresso, along with a quick nap from time to time, has allowed me to continue my normal routine. Another side effect of the medicine I'm taking can also be weight-gain, which is ironic considering Leukemia normally makes a person lose weight. But keep in mind, the medicine brings your blood levels to normal, so your body is no longer fighting the cancer because the TKIs have basically targeted the root cause, and eradicated the body's need to fight it.

The goal of my treatment is not to cure me from Leukemia, it is however to regulate the disease with the medicine so that I can live a normal life. Sometimes, the disease can go undiagnosed without normal annual blood tests which can detect the elevated white blood count. There are three stages of the disease, Chronic which is treatable with TKIs, Accelerated Phase where treatment becomes more difficult, and the Blast Phase which is the most severe stage with rapid progression and a significant health impact. The ultimate plan is to keep the disease under control and to prevent it from progressing to the more severe second a third stages.

Roswell Has Been a Very Positive Experience 

My admiration for Roswell does not reflect at all on the value I place and the appreciation I feel for our local doctors and nurses and the positive treatment I've received at MVHS. During this latest cancer experience, I've had times where I've needed to get bloodwork locally, and even treatment at Wynn Hospital and its emergency room. I've had nothing but positive reports to give regarding my recent visits to Wynn Hospital.

My reasoning for going to Roswell is the fact that it's a cancer research center which allows me to take the latest and greatest medicines as part of a study, which I could not get had we chose to stay local. Furthermore, at Roswell Cancer Center I'm at one of the best cancer research hospitals in America and everything is streamlined for the cancer patient. In my case, everything is streamlined for the Leukemia patient. To make things more comfortable. there's a hotel adjacent to the hospital, an ER dedicated to cancer patients, a help center that assists with the patient's cancer journey as well as their family's experiences. During my appointments, I arrive for blood work, quickly move on to EKG and imaging, and then to the Leukemia Department. Here I see the nurse, my clinical trial coordinator and nurse practitioner, followed by my doctor, who only treats leukemia patients, and who already has the results of my bloodwork from an hour before. Also, everyone from check-in to the cafeteria, volunteers, and even custodial professionals are always proactive in assisting patients and their families. The staff goes out of their way attempting to eliminate any possible obstacles that a patient or their family members might face. This means so much as it offers hope and comfort in a place where there's the potential for so much sadness.

How Much are These TKI Medicines?

These medicines are extremely expensive, but they are literally life-savers. With the medicine, I should be able to live as normal of a life, as I would without cancer. While prices for these medicines vary, they average about $22,874 a month, or $3,812 per pill. I take two pills each night. Thankfully, there are several programs available with or without insurance to assist people who can't afford such a high monthly pharmacy bill. Currently, because I am on a three-year trial to determine the effects of the medicine, the pills are provided by the drug maker.

Chronic Myeloid Leukemia and the Miracle Knowns as TKI Treatment

Chronic Myeloid Leukemia (CML), also known as chronic myelogenous leukemia, is a type of blood cancer that starts in the bone marrow—the soft, spongy tissue inside bones where blood cells are produced. It primarily affects white blood cells, leading to the overproduction of abnormal and immature cells. These abnormal cells crowd out healthy blood cells, which can interfere with the body's ability to fight infections, carry oxygen, and control bleeding. Prior to the approval of TKI oral chemotherapy treatment in 2002, positive prognosis for a patient's survival for at least 5 years was under 35%.

Key Characteristics of CML

Chromosomal Abnormality:

• CML is strongly associated with a genetic mutation called the Philadelphia chromosome. This mutation involves a translocation (swapping) of genetic material between chromosome 9 and chromosome 22, resulting in the formation of the BCR-ABL gene.

• The BCR-ABL gene produces an abnormal protein that promotes uncontrolled cell division.

Phases of CML:

• Chronic Phase: This is the earliest stage, where symptoms may be mild or absent, and the disease progresses slowly.

• Accelerated Phase: At this stage, symptoms worsen, and the number of abnormal cells increases.

• Blast Crisis: This is the most severe stage, where the disease behaves like acute leukemia, with a rapid progression and significant health impact.

Symptoms:

-Fatigue

-Weight loss

-Fever

-Night sweats

-Anemia (low red blood cell count)

-Enlarged spleen, causing abdominal discomfort

-Frequent infections or bleeding

Diagnosis:

• Blood tests: High white blood cell counts are often a first clue.

• Bone marrow biopsy: To confirm the diagnosis and assess the phase of CML.

• Genetic tests: To identify the Philadelphia chromosome and BCR-ABL gene.

Treatment:

• Targeted Therapy: Tyrosine kinase inhibitors (TKIs), such as imatinib, dasatinib, and nilotinib, specifically block the BCR-ABL protein and are highly effective in controlling the disease.

• Bone Marrow/Stem Cell Transplant: Considered for some patients, particularly if the disease is advanced or resistant to TKIs.

• Chemotherapy: Used in advanced phases or in combination with other treatments.

• Supportive Care: Includes transfusions, antibiotics, and medications to manage symptoms.

Prognosis:

• With advances in targeted therapy, many people with CML live normal or near-normal lifespans, especially when diagnosed in the chronic phase.

CML is considered a model disease for targeted cancer therapies, as drugs like imatinib revolutionized its treatment and outcomes.

Real Men Get Tested for Cancer

Shortly following our bout with cancer, Tim Reed and I started Real Men Get Tested for Cancer. It's a non-profit through the Community Foundation that simply promotes cancer screening for men for early detection. Donate to this charity here.