Published on February 20, 2020
- If you have been diagnosed with chronic lymphocytic leukemia (CLL) or another rare disease, consult a specialist for help.
In this segment from our "Facing CLL Together" Town Meeting in Arlington, Texas, chronic lymphocytic leukemia patient and advocate Lee Swanson shares the story of how an unsatisfying first visit with his initial oncologist motivated him to seek help from a CLL specialist instead.
Dr. Nicole Lamanna, a CLL expert from Columbia University Medical Center, agrees with Lee and shares her own thoughts on why it’s critical for patients who have been diagnosed with CLL or one of the other subtypes of leukemia to consult with someone who specializes in the disease. Watch now to learn more.
This program is sponsored by AbbVie Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power and Patient Power is solely responsible for program content.
Transcript | Seeking a CLL Specialist
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
In 2007, I went to my primary care doctor for a physical; and we were looking for cholesterol, and we found CLL.
Yeah. And he sent me to a hematologist/oncologist, and I my first question was, what is this? What are you talking about? I’ve never heard of this. And I was asking global questions, and he was saying come back in four months, and we’ll do another blood test, it’s treatable, it’s not curable, so just come back later. And I was asking you just said cancer and the next sentence is supposed to be this is how long you’ve got. So, am I going to live or am I going to die, and if so when, and if not, why not? And he said come back in four months we’ll do another blood test. So, I went where you always go for medical advice, Google.
Dr. Google. Yeah.
And found several articles that kept mentioning a Dr. Kipps at UC San Diego, which is five miles from my house. And he was in so many of these articles about the research that he was doing and being quoted about things as well. He’s never going see me; he’s way too busy. I called, and they said how’s next Wednesday, and so, I fired the other guy, I didn’t have to give him severance, I got to Dr. Kipps and have never looked back. I did FCR in 2008 about a year after my diagnosis and was in remission until 2014, and did the MURANO Trial venetoclax (Venclexta) and rituximab (Rituxan) in early 2015, and came out of that MRD-negative, and have been without any medication at all for about two-and-a-half years now.
Let me ask you this; between the time you saw the first hematologist/oncologist, and you saw Dr. Kipps, something inside you was seeding doubt. You clearly were feeling uncomfortable about what this oncologist, what is—for example, I think we’ve all had physicians they’ve been dismissive, they have broad-brushed, or they have swept over our questions. What was the inside of you that said that this will not stand?
I got the impression he didn’t have time for me.
Can I say one thing? I think we, being the specialist, we see this a lot, so the patients come to us as second opinions, third opinions…
A lot, yeah.
And I think the reason being, I think there are very fine oncologists in the community, I mean I don’t want to go to—but you’re an unusual individual, CLL’s not so common, it’s a leukemia, if we put all the leukemias together this is one, but if you put all of them, AML, there are several subtypes of leukemia you guys really represent like 4 to 5 percent incidence of cancer in the U.S. So, compared to what most of the oncologists are seeing their butter, the solid tumors, lung, colon, breasts, so on and so forth. So, when they get a CLL patient, and their counts are fine, they’re going 5, 10, 15 count they don’t have time for this.
And we do feel that we hear this all the time, and so we echo the sentiment that you guys need to have some time to talk about your concerns and the issues, because it’s brand new to you, they’re like you don’t need treatment you’re fine. So, it’s part of that sense, and that’s wrong, and that’s why we’re trying to educate community docs, that’s why we think you guys need to be with specialists because we do spend that time in council, and I’ll spend a whole hour discussing CLL, and you meet my nurse and nurse practitioner, I mean it’s a whole new support group that we need because we realize that the first year or two after diagnosis that mentally it plays a head game with patients, physically.
So, you know, it’s very important, but we hear that a lot, and I think that’s the biggest reason why patients do leave their primary, some of their initial encounters, so it’s really important.
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