Patient Power Knowledge. Confidence. Hope. Janet O Brien: My Advice to CLL Patients with Richter s Transformation Janet O Brien CLL Patient Advocate 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. Andrew Schorr at the CLL Live conference in Niagara Falls, Ontario, and you hear a lot of stories. This is Janet O'Brien. For a number of years, Janet ran a hematology lab in Ontario at a hospital. She saw thousands of blood test results. One day you're calibrating the machines, and one of your co-workers pulls your blood, runs it through the machine, and the result came back what? That my lymphocytes were elevated like you would see in CLL. You had had a DPT booster shot, and so one of the advisors there said, oh, it must be the DPT. I told myself that because I knew that that could cause lymphocytes to go up. Okay. So it was just the vaccine. Yeah, it's nothing to worry about, because I'm 40 years old, and 40-year-old people don't get CLL. Okay. Right. 40-year-olds don't get CLL. More often it's a man, and she'd just had a vaccine. No CLL, right? Right.
Doctor says get retested in a few months. What happened? My lymphocytes were higher. So then you say what do you do? So she sends her own blood off to a lab to do flow cytometry. And then after a little bit you call up asking about, hey, what how did that a sample look, not saying that you were the patient? And what did they say? They said we'll fax you the results. They've already gone out. I don't know why you haven't received them on that patient. So I stood by the fax machine, and once it came out and I saw consistent with CLL I was so shocked. Okay. But then you talked to again one of the docs at the hospital. Our chief lab technologist. The chief lab technologist says but you're young Like, Janet, you're crazy. can't be. The machines are wrong. The flow cytometry is wrong. Get it done again. Okay. They don't know what they're talking about. So get this: Then she makes a call as a healthcare professional to a hematologist in another city. In Ottawa. In Ottawa, yeah, and say, well, if a patient had these kinds of results, what do you think it would be, and the doctor said
CLL. And then you later showed everything to a pathologist and somebody you knew. And the pathologist said CLL. Why can't what more do I need to tell you? Okay. It goes on from there. She kept working. No treatment. You feel a lump over here. Is it inflammatory breast cancer? Could be. Was it? No. No. It turned out to be Richter's. Richter's transformation, not good. Not good. And so you had what treatment? R-CHOP, which is the standard treatment for Richter's. Okay. Now, doesn't always work. It's heavy, you know, heavy-duty treatment, and you went through this. So you were first diagnosed in two thousand and two with CLL. And then finally had the treatment two thousand and? September 2009 until January 1st, 2010, I had the R-CHOP, six cycles. Okay. And the good news is?
It took away the Richter's and which I was one of 30 percent, so yay, and it put the CLL into temporary remission, which has only started to come back about two years ago. Okay. And you will have some other CLL treatment, if you need to get that. Right now, I'm still back to watch and wait. Okay. And what's the story here? So can younger people get CLL? Are today's machines [are] usually right? Okay. Do you have to face up to it? Richter's transformation, complication of CLL for sure not good, but are there people who do well with the treatment? And I formed a team called Team Richter's to encourage people to not look at the doom and gloom of this, that we can beat it, and I think attitude has a lot to do with it, whether you're going to make it or not. And if I could give anybody with CLL two important things out of this is make sure your doctor puts an LDH on every one of your blood counts, that it should be done every time you go, because that is a big red flag that something is going on. It might not be Richter's. It could be myelodysplasia. It could be another problem, but just make sure you're getting LDHs done on a regular basis and that when it is elevated something is done. And also if you ever have any bump or lump that appears suddenly and grows fast, run to your oncologist or hematologist because if this is Richter's, it needs treatment. You're not in watch and wait. Now you're in fast and furious and scared, so you have to get this treated really fast if you want to live. And you have. I started treatment within a three weeks of finding the lump. And it's worked out.
Thank you, Janet. Okay. Janet O'Brien, I'm going to give you a hug. Thank you. Thank you. She's so active also on the Internet, Bad to the Bone and the CLL Facebook groups and ACOR. Use these resources, folks, because there are people out there with all these different stories, and there may be one like you that can be inspiring to you. On location in Niagara Falls, I'm Andrew Schorr with Janet O'Brien reminding you, knowledge can be the best medicine of all. 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.