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Lessons Learned from My Journey with Chronic Lymphocytic Leukemia

June 2021 Vol 7 No 3
George Valentine
Irving, Texas

In 2002, I had a routine physical exam, and the doctor saw something he didn’t like. I came back for more lab tests, and he told me he had some bad news: I had leukemia.

After a barrage of tests, they confirmed that I had chronic lymphocytic leukemia (or CLL). The doctor said that of all the different types of leukemia, this was the one to have, because it was chronic, rather than acute, meaning that it progresses very slowly. I’ve been living with CLL for about 19 years now, and I have learned a lot about what to expect, how to advocate for yourself, and how to find the right resources.

Let me share some of my hard-learned tips with you, regardless of what type of cancer you have.

1. You Have to Be Really Good at Doing Your Own Research

After my diagnosis, I went home and immediately scrubbed the Internet, looking for the life expectancy for CLL, what it all meant, and what to expect going forward. One of the things I learned early on was that there is a lot of information, and not all of it is accurate.

Make sure you are researching multiple sources to be sure you’re getting accurate information on your cancer, the medicines you take, on the treatment options and treatment course, on doctors, and on facilities. And it’s a continuous process. Even today, if my doctor wants to change my medication, I go home and do my research.

2. Be Honest and Open with Everybody in Your Life, and Find Your Advocate

I had to figure out how do I tell my family? How do I tell my boss? Different people handle a cancer diagnosis in different ways, and that’s fine. Your responsibility is to be honest with everyone. It’s not a one-time procedure, and then it’s done. Dealing with CLL is a lifelong journey.

After you’ve told your loved ones, you need to decide who will be your advocate. Don’t just have your wife, your husband, or your mother take you to your doctors’ appointments.

You need someone who will sit there and focus on making sure that you get the right information, you understand what the doctor is saying, and you are asking all the right questions. Choosing the right advocate to take that journey with you for the rest of your life is critical.

When the doctor says, “We think you need chemo, and we think you need it next week,” you no longer hear anything after “chemo.” Your mind just goes off. That happens all the time during the journey. Often your advocate is your spouse, but it is very important that he or she understand the role they need to play.

When you are first diagnosed with a serious illness, many people will come forward and say, “If there’s anything I can do, let me know.” Let them know that you may ask them to come to a doctor’s appointment, ask a list of questions, and help you remember what the doctor says. Or you may ask them to do some research online about a particular medicine or a treatment option and explain it to you in simple terms.

3. There Are 2 Types of Doctors: Scientists and Medical Doctors. Select the Right Type for You

A scientist tells you, “George, your white blood cell count is x, y, or z, and we need to do chemo.” A medical doctor says, “George, how are you feeling? How’s your family?”

Sometimes you need a scientist who knows all about CLL and your treatment, but sometimes you need someone who reaches out and puts a hand on your knee and says, “We’re going to get through this. Let me explain what comes next in the treatment.”

Also, the facility that provides your care is important. I have 10 doctors now, as a result of my leukemia, and all 10 of them are at UT Southwestern Medical Center in Texas.

They all have online access and can all see my lab results, treatments, and medicine prescribed by each of them. They can all consult with each other. Otherwise, you’ll find yourself running around from one doctor to another, even in different locations, and that adds to the emotional trauma that you incur when you have a serious illness.

My first doctor was more of a scientist, and then I found a doctor who was a medical doctor. I wasn’t really concerned with how long I was going to live. I had accepted that I wasn’t going to live forever. I was more concerned with my quality of life while living with this illness. I want to stay healthy. I want to stay active. My doctor understands my goals, and the lifestyle I want to be able to lead.

4. Be Very Strict with Your Diet

No alcohol. No smoking. Walk and exercise. Prepare yourself for any procedure. If my leukemia causes a problem with my liver, and I need to have a procedure, I want to be strong enough and healthy enough to go through that. To help the doctors, my goal is to eat healthy, exercise, and generally stay away from things that aren’t good for me. And that’s what I’ve been doing since I was diagnosed with CLL.

5. Many Resources Are Available to Assist You

Every year since 2007, I reached my out-of-pocket maximum. Now that I am retired, I have Medicare insurance, which has no fixed limit to out-of-pocket medical costs. My treatment is costly. It is not as costly as some other cancers, but there is a significant cost associated with my leukemia. My medical costs directly related to CLL treatment exceed $150,000 annually.

So, I had to research and find help with this heavy cost burden, which does keep you awake at night. And I found a blessing. The PAN Foundation (www.panfoundation.org) has stepped in and helped me with my out-of-pocket costs.

My PAN grant allows me to focus on staying healthy, eating right, and not worrying how I am going to pay the bills. And their grants are not just for CLL. The PAN Foundation helps all kinds of people with different types of cancer and needs other than just medicines, such as transportation to doctors’ appointments and other things.

I thought it was going to take months and many layers of approval to get the grant. But the time from when I finished the application online—a simple 15-minute process—to when I took my approval letter to the pharmacy was about a week. The foundation has made a huge difference in my life. Other resources I recommend for patients with CLL are the Dallas Area CLL Patient Support Group, and the Leukemia & Lymphoma Society (www.lls.org) for all patients with leukemia or lymphoma.

6. You Are Not Alone

If I had a friend who just found out that he or she had CLL, I would share all these things. But one of the most important things would be to say, “You’re not alone in this fight.” Knowing that there is a community of people who are with me, to help me through my illness, to keep me healthy enough to do the other things that make me happy, that’s key.

That’s the special place that you want to be if you have been diagnosed with CLL. You want to be within a community of people and organizations that are there to help you along your journey.

They may not all be blood relatives, but it’s a family of people, a community of people that comes together. My doctor, my pharmacist, my advocate, my family, my work—all of that comes together to ensure that I have a viable opportunity for a long life.

I was diagnosed with CLL almost 19 years ago. When I was first diagnosed, it was said that the life expectancy was 5 to 7 years. I never would have expected that I would be around to this day. However, I can do anything I did at age 50, before I had leukemia. I just can’t do it as fast. And my hope for the future is even brighter, because there are many new treatments and new medicines being added all the time.

10 Questions New Patients Should Ask Their Doctors

  1. Can you outline your plan for my CLL treatment over the next 5 years?
  2. Were there other treatment courses available that you considered?
  3. What is your personal experience with my form of CLL?
  4. Does your office or facility sponsor any in-person or online CLL group sessions?
  5. Are your facilities and staff in-network of my current health insurance?
  6. Do you offer evening or weekend hours for treatments or visits?
  7. Will you manage or coordinate my care with other providers to ensure that my CLL treatment is in sync with other provider treatments?
  8. What resources are available to assist with any large out-of-pocket expenses?
  9. What sources would you recommend to help me understand my illness and associated treatments and/or medicines?
  10. Will you ensure that I am made aware beforehand of any treatment or medicine cost you intend to administer that may not be covered by my insurance?

CLL Fund at the PAN Foundation

George has been receiving copay assistance from the PAN Foundation. If you or a loved one are living with CLL and need support with your out-of-pocket medication costs, you may be eligible for up to $8,700 a year in financial assistance through the PAN Foundation. Check your eligibility and apply at panfoundation.org/disease-funds/chronic-lymphocytic-leukemia/. The fund also provides assistance for other types of cancer.

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