Nathan's Story: Receiving a Diagnosis of CLL



Harry P. Erba, M.D., Ph.D.: Let’s move on now and let’s get to why we—the four of us on the ends—do what we do every day. It’s for Nathan and Lisa. Why don’t you bring us through your story? How did you present? What did doctors do for you in terms of evaluating you? How was that?

Nathan Ferguson: I had a little bit of a different diagnosis journey. As Lisa had said earlier, we moved in early 2016. Looking back on it, I hadn’t been feeling very well. I was working in the ER [emergency department] during the night shift, so I was moving back and forth from days to nights, and I was feeling down from that. So there was general fatigue, but I blew it off as just getting older and working the night shift. And earlier in the year, I started to developing hives, and I’d never been allergic to anything in my life. I started trying to figure out what was going on with that. Lisa was hired for her job, so then the move was the focus. The hives started getting worse and worse. I could never really figure them out. Finally, I decided that when we get through this move, I need to go see my primary care doctor and see what’s going on. I also had had a touch of a lung issue.

We did the move and the physical portion of the move really destroyed me, more so such that I realized, something is going on. So I saw my PCM [primary care manager] about two weeks after that. I just thought I would go for an allergy referral. He gave me an albuterol inhaler for my lungs. He talked about doing an X-ray of my chest, and I said, “I don’t really think that will do it.” So he agreed to do a CT [computed tomography] scan of my lungs.

I got my allergy referral, set up that appointment. I went and had my CT scan done and I got a call the next day and he said, “Your spleen and a couple of your lymph nodes are looking a little enlarged, so we want to redo the scan with IV [intravenous] dye to get a better look at them.” I asked, “Well, what are they concerned with?” He said, “Well, let’s repeat this and give me a call a week after and we’ll figure it out.” At that point, he didn’t want to do any laboratory work. I quickly booked the CT scan because I was concerned, they called me back and asked about doing some laboratory work to make sure I was OK with the IV dye, and I asked them to do a CBC [complete blood count] on me as well. I went to the CT scan that day and had the IV dye. They drew my laboratory tests earlier. When they finished the CT scan, I asked the technician if he wouldn’t mind pulling up by CBC. So he pulled it up and my white cell count was 80,000 per µL, and as a nurse I knew that was beyond bad. I said thanks and I started heading down to see my primary care doctor, who was in the hospital.

As I was leaving he said, “Mr. Ferguson, they need you down in primary care.” I said, “Yes, I know.” I went down there. The provider I saw said, “We’ve booked you a quick visit to the oncologist today,” and that was the first step. I went and saw that doctor. She felt pretty sure that I had CLL [chronic lymphocytic leukemia]. She was a general oncologist. I hate to say nonchalant, but she said, “We’ll do some chemotherapy and you’ll be OK.” And of course, I was devastated. So that was off-putting a little bit. She handed me a script to go get a port in place and said I’d probably be doing chemotherapy in the next three months. I had a bone marrow biopsy the next day, and that started the first portion of my journey.

Harry P. Erba, M.D., Ph.D.: How long ago was that?

Nathan Ferguson: That was in May of 2016. As I said, I was pretty much devastated. I had lost about 14 pounds in three weeks. I’m a stress non-eater. I just had zero appetite, and the key to getting better was getting accurate knowledge and then moving on.

After about three weeks of figuring out that chemotherapy wasn’t really the route I wanted to go, I learned about the new novel therapies. I booked a second opinion in Louisville, Kentucky, at a cancer center there. I went up there, and I liked my doctor there and I told him, “Chemotherapy and ports,” and he said, “No, no, no, let’s get a few months of laboratory work and we’ll start going from there.”

I had found the CLL Society by then, and one of their big caveats is you need to have a CLL specialist in your corner so that you’re assured that you’re getting the best care. I went to my insurance and asked for the third opinion, which I got, and I’m fortunate that I have Dr. Flinn fairly close by for me. I drove down and saw Dr. Flinn and he pretty much agreed with the second doctor, that we’ll watch and see how it goes. And I’d say it was about August of 2016 that I saw Dr. Flinn for the first time. And the goal at that point was maybe to see him every year until something changed.

Mine progressed fairly quickly. I think it was probably due to the stress. I went from an 80,000 per µL white cell count, and I think by December-January, I was 180,000 per µL. And so, after I saw Dr. Flinn, I went back to the James Graham Brown Cancer Center. I saw him a few times and as my count was going up, my red cells were going down and my hemoglobin was going down, so I knew that I was going to need treatment fairly soon.

Transcript Edited for Clarity

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