It is our great honour to welcome the seventh member of the writing team here at Blood Cancer Uncensored: Tom Henry who is a specialist pharmacist, a patient advocate, and a CLL patient himself.

Read future posts from the CLL Pharmacist here or on Tom’s website

In this first post we join Tom as the describes his journey and the goal of the material he shares here and on his own site.

Have we met yet?

I’m Tom Henry the CLL Pharmacist

When you or a loved one was diagnosed with Chronic Lymphocytic Leukemia (CLL), did you do research? Did you start with Google? That’s what I did and I quickly learned that not all information is reliable. Thats why here at blood cancer uncensored we have created a customised search engine for quality blood cancer websites.

You can take the FEAR out of CLL through education, benefit from my professional experience, and just as importantly my journey as a fellow CLL warrior!

I want to be one of the sources you turn to first. Not just because I’ve been a pharmacist for 41-years but, because, like YOU, I am a CLL patient since 2015.

Did you initially feel overwhelmed, afraid, and didn’t know where to turn for information, or are you an “old-hand” at CLL and just looking for additional information?  I want to share the knowledge I’ve gained, as a patient, healthcare provider, and a CLL patient-advocate, to lessen the burden for you.

CLL Pharmacist has prepared a comprehensive guide to help North American CLL patients navigate the “sometimes” high cost of our Care. Find links to programs designed for CLL Patients. Did you know there is assistance to help cover the costs of travel and lodging? Get instant access! Just enter your name and email address. We will not sell your information, nor will we load your inbox.

Here’s What I believe:

• Together, we can take the fear out of CLL through education and knowledge.
• You and I have control over our life and our care. I hope that you, like me, have vowed that allowing this to  “just happen” or “control us” is NOT AN OPTION.
• There is power in a team and more power in a community, and you and I benefit when we interact with others who have the same challenge.
• When we present a confident demeanor, backed by information, our healthcare-team responds with better care, customized to meet our individual needs.
• I created this content out of my desire to help fellow patients. I make no money from this endeavor.

MY JOURNEY

Here’s How I Got Started

Like many patients, the first news that something was amiss came when I went for my routine annual physical and my White Blood Cell (WBC) count was elevated. My physician’s assistant immediately suspected CLL. 

Because I had recently been to South America, my doctor ran a blood test to check for malaria. The first test was positive, and I thought “malaria is probably better than cancer”. In the second test, a DNA test, used to confirm the initial test the result was negative and showed it was not malaria. 

Have you experienced an initial misdiagnosis? If I hadn’t had the second test, I might have!

I went to a Duke Cancer Community Clinic, in North Carolina, where CLL was confirmed, by a medical oncologist. He told me that he knew of patients that had gone 20-years with no treatment. He told me “if you have to have cancer, this is a good cancer”! Did you receive this message too?

At my next visit, he told me that I had deletion 17P, a more aggressive form of CLL and likely would need treatment sooner than many patients. Imagine my concern when he said, “we will watch and wait”?  Do you share my view that “Watch and Worry” is more appropriate? 

I asked, “when I need treatment, what will it likely be?” I was told Bendamustine and Rituximab (BR).

I started to research this treatment. I learned quickly that “Traditional Chemotherapy” would not likely work given my genetic mutation (17p). Have you had genetic testing to identify the specific mutations of your CLL? Did you know that certain mutations’ chemo will provide no benefit and increases the risks of other cancers?

The more I learned the more I lost confidence in the clinic oncologist and asked to see a hematologist, who, luckily for me, specialized, in CLL. Are you prepared to ask for a second opinion? Do you have the information to know when something might not be right?

Let me share what I’ve learned with you!

The tips and information I provide on this site should foster communication with your CLL Team! Legally these should not be construed as medical advice, rather they serve to make you a more knowledgeable and engaged patient. Always consult your team before making any changes in your care.

• I strongly advocate you see a malignant hematologist who specializes in CLL, whenever possible.
• I was lucky to find a CLL specialist without having to change from Duke.
• It’s okay to change doctors or use a local hematologist/oncologist who works together with a specialist further from home.
• Are you being followed by or consult with a CLL specialist? The CLL Society, provides virtual second opinions, on-line for free if there is no specialist in your area!

I want you to feel empowered to advocate for your care, to question what seems wrong for you and, if necessary seek a second opinion or change providers to someone more willing to listen to you and be honest with you.

My Professional Experience 

I have had the privilege of serving as the Chief Pharmacy Officer at H.L. Moffitt Cancer Center, and Research Institute (#8 Cancer Hosp – US News World Report), in Tampa, Florida and Roswell Park Comprehensive Cancer Center (#15), in Buffalo, New York. This has exposed me to some of the best minds in the treatment and research of cancer.

I am on the Medical Advisory Board of the CLL Society and I am a clinical writer on their team. I try to teach and write in easy to understand terms and to offer helpful suggestions not only for coping with CLL but for other medical conditions that may be present with CLL.