After Beating Cancer 6-Years Ago, The Dreaded Disease Is Back

When my doctor told me I had colon cancer back in 2018, it was devastating to hear. After surgery, we learned it was early stage cancer, and I wouldn't need radiation or chemotherapy. I had beaten the disease. Now, getting a cancer diagnosis a second time six years later seemed just as bad, if not worse. In fact, this time did seem worse because not only did the doctors use the "C" word, they also used the dreaded "L" word - Cancer and Leukemia. Plus, I had put cancer behind me, and here it was again negatively affecting my life.

I had done annual bloodwork for my physical, and my white blood cells were abnormally high. The word Leukemia of course, immediately sent me down the very disturbing "Dr. Google" rabbit hole. Let's be honest, no matter how often you read on Google that many versions of Leukemia are treatable, it's very easy to get hung up on the one that says only 5-percent of people survive.

Three weeks ago on a Friday, I received a phone call from my new Oncologist Dr. Samir Desai at the Utica Cancer Center who said he wanted to reach me before he went on vacation so that I wouldn't be left worrying for a week as results from this test wouldn't be put into my portal. It turned out, I did indeed have a kind of Leukemia that is managed very successfully. In fact, since 2018, Chronic Myeloid Leukemia has almost a 100-percent survival rate as long as you're able to handle the daily pill (oral chemotherapy), that I might need to take for the rest of my life. This Leukemia, CML, is not curable like some other cancers, but is treatable when detected early. Prior to 2001, there were no drugs to manage this Leukemia and the survival rate was well below 35-percent. Just think of the number of people who have died from the disease simply because of the year they were born. I've learned, when it comes to surviving cancer, timing is everything in so many ways.

I was definitely very relieved by this good news, but still shaken over everything we don't know - like what if I can't take the medicine? What if it spreads and turns into something else? Has my Colon Cancer come back too? I had a lot of questions that kept me up at night and honestly, I still do.

About Chronic Myeloid Leukemia (CML)

Chronic Myeloid Leukemia (CML), is not hereditary, by the way. In laymen's terms, the disease works this way: there's a chromosome that causes your body to hyper-produce white blood cells that then mutate into cancer cells. Often times, a person will have little or no symptoms and catching this cancer early, doesn't always change things like stages in most other types of cancer. Still, even though it's slow-moving, if left untreated it can develop into two far more dangerous stages of the disease.

In my case, I have no symptoms and this was only caught because my doctors - Dr. Garg and Dr. Zelinski - each asked for routine bloodwork to test for something else, and my sub numbers came back high.

The disease is confirmed through special bloodwork, and possibly a bone marrow aspiration and biopsy. Actually, the bone marrow sample is really the only way to unequivocally confirm the disease.

Like in 2018, I trusted my local doctors, but I was definitely going for a second opinion and my local physicians agreed that was a good idea. So we traveled to the Roswell Park Comprehensive Cancer Center in Buffalo where I was then informed that the latest research suggests a bone marrow biopsy is now highly recommended. I dreaded it, but figured if a child could go through this procedure, which sadly some have to, then I shouldn't be a baby about it. I must admit, that test was definitely difficult, but it wasn't really as painful as I expected. It's kind of like going to the dentist and having a tooth drilled or removed. The worst pain is mostly the burning you get when the numbing medication is shot into your hip. The second pain isn't really pain, but feeling a pressure and more about knowing what they're doing. A little side note, I was informed this week that when they did the first test, they didn't get a good enough sample, so I'll have to have the bone marrow test done again soon. Lovely!

Roswell was an amazing facility with a team of Leukemia specialists and staff that successfully work very hard to comfort you and your family, and to most efficiently treat your disease. I highly recommend them and thank fitness instructor Steve Nunno for advising me to go there. Their doctors, nurses, and specialists will work with my local oncologist to assist in treatment and facilitate the many blood draws that I'll be facing over the next several years. I also agreed to become a part of a study at Roswell to help determine if the drug I'm going to be taking, Scemblix, should be approved by the Food and Drug Administration (FDA) as a first line treatment against the disease. It's currently a third-line treatment, meaning if two first-line treatments fail, you can take this drug. This is important, because Scemblix is much newer, and comes with far fewer side-effects.

One more thing to consider, these medicines that I'll be taking such as Scemblix are incredibly expensive, as you might expect, and it's something I might need to take for the rest of my life. There are grant programs that will assist people in taking these life saving drugs, or even to cover the co-pay. In my case, we have very good insurance, and still, the co-pay annually will exceed $7,000. There's a program through Excellus Blue Cross Blue Shield that assists with paying that portion not covered by insurance. Thankfully, programs like this are available for everyone.

I'd be remiss if I didn't mention the great experience I've had so far with Dr. Desai and the Utica Cancer Center at MVHS, Wynn Hospital Imaging, Dr. Bhisham Garg, The Falcon Clinic, Dr. Zelinski, Dr. Chmeliewski, Dr. Adam Ellis, and Dr. Kent Hall. Thankfully, there are people like this locally to help.

My Take Aways

I can't help but think of all of the people who contracted CML, before 2018 or worse yet, before 2001 when there was no medicine to manage the disease. Many of these people went through bone marrow transplants and radiation or chemotherapy and many did not survive. Amazingly today, CML and these new treatments that are available, a person's life expectancy is now as long an individual who doesn't have cancer. That's a pretty amazing thing for a disease that 20 years ago was considered a death sentence. Still, while this form of Leukemia mainly targets people later in life, I can't help but think of the thousands of innocent children who are tasked with battling some form of cancer so early in life and how so many children don't survive. Life isn't fair, but medically, we seem to be improving.

I also think of the organization "Real Men Get Tested for Cancer" that local business consultant Tim Reed and I created in 2019 to get the message out about the importance of getting tested for cancer. First, our organization RMGT has virtually no administrative fees and no salaries. We simply raise money and put it into advertising campaigns reminding mainly men, who tend to be a bit on the stubborn side, to regularly get tested for cancer when recommended by their doctors.

My cancer, which is now how I refer to it, often times has no symptoms in the first stage called Chronic, and can go undetected for several months or even a few years. If my local doctors hadn't done a routine annual check, I probably wouldn't have known until it became more severe. The survival rate for CML if left untreated is 2-3 years, according to Medical News Today. There are three stages of CML - Chronic (which can be treated), Accelerated Phase, and Blast Phase which are much more difficult to treat successfully.

Obviously, other cancers such as Colon Cancer, Breast Cancer, and Lung Cancer are far less deadly on average when discovered early. A cancer like Prostate Cancer could be very slow moving, but there are also other kinds that move quickly and are considered more deadly. This is why Tim and I continue to hammer away at Real Men Get Tested for Cancer in hopes of increasing the number of men who avoid procrastination, and ultimately get tested and they significantly  increase their survival rate.

(Be sure include REAL MEN GET TESTED in your entry.

One Final Thought

Today, we all know someone or even many who have sadly died from cancer. So far, I'm one of the lucky ones because first, I had a cancer that's treatable, and second, I had a family doctor who promoted testing early for cancer - I tested, and discovered the deadly disease in time to be able to receive treatment, twice now (I'm optimistic).

For the record, I haven't started taking the new medicine yet. I'll begin with one of the older tyrosine kinase inhibitor (TKI) drugs for the first few weeks, and then move to the new targeted drug as part of the trial some time after that. I expect that I'll have to deal with some difficult side effects, but they clearly aren't worse than the alternative, which is death.

Obviously, I'm not a physician and want to caution anyone reading this is about my personal experience and research which I've done for the two types of cancer I've had to deal with. I can not stress enough the importance of getting tested early and on-time for the types of cancer we can test for today and to consult your physician for the proper advice. If there's someone you know who isn't getting the recommended testing done or someone who is simply procrastinating, please urge them to act swiftly and contact their doctor. It could be the difference between a painless minimally invasive procedure, and having to live with a colostomy bag or even death. Or with my current cancer, the difference between taking a very strong pill everyday and death.

I understand that getting this news is horrible and I also understand how easy it is to put off the testing because you just don't want to deal with it. The truth is, avoiding it almost always makes matters worse, and it almost always makes the struggle through treatment far more difficult. Just the thought of a bone marrow biopsy had me shaking in my boots, or having a catheter stuck in me, or going through surgery - all of it was something I did and still do dread. But waiting for it all to get better just by procrastinating, almost always has a worse ending.

Finally, I really struggled over whether or not to share this news. Once I learned of the type of cancer I was dealing with, I was tempted to keep it in my circle of family and closest friends. I'm actually embarrassed about the morning last week that I discussed it on-air and I became emotional. Thankfully, Tim Reed who was in-studio, was able to finish my thoughts when I was struggling. Normally in radio, we reveal someone else's good fortunes or someone else's struggles and it's abnormally personal for me to be talking about my woes and my problems. Especially for someone who's been in radio since 1981 - always reporting someone else's news. However, over the years as a morning radio host I've shared a lot of good and bad things that I've lived through, so why should this be any different? Actually, I prefer not to talk about the cancer because it's still very emotional for me.

In the end, please be clear, I'm not asking for a thank you or any accolades over going public with this. Other people are going through it, and even far worse, every single day. But as for announcing it all on the radio, I'm just talking like I do every morning and hoping to make a connection with someone. In this case, maybe that connection inspires that someone out there to do something that ultimately could save their life, or someone else's.