Janet O’Brien: My Advice for CLL Patients with Richter’s Transformation

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Topics include: Patient Stories

Janet O’Brien ran a hematology lab and saw hundreds of blood tests. One day, while calibrating a machine with her own blood, Janet saw that her lymphocytes were elevated, and she suspected CLL. At the CLL Live 2015 conference in Niagara Falls, Canada, Janet joined Andrew to tell her story and the proactive steps she took to get an accurate diagnosis. Janet shares her advice for others and how her treatment approach went from “watch and wait” to “fast and furious” after learning that she had Richter’s transformation.

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Transcript

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:

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?  

Janet O'Brien:

That my lymphocytes were elevated like you would see in CLL. 

Andrew Schorr:

You had had a DPT booster shot, and so one of the advisors there said, oh, it must be the DPT. 

Janet O'Brien:

Yes.  I told myself that because I knew that that could cause lymphocytes to go up. 

Andrew Schorr:

Okay.  So it was just the vaccine. 

Janet O'Brien:

Yeah, it's nothing to worry about, because I'm 40 years old, and 40-year-old people don't get CLL. 

Andrew Schorr:

Okay.  Right.  40-year-olds don't get CLL. More often it's a man, and she'd just had a vaccine. 

Janet O'Brien:

Yeah. 

Andrew Schorr:

No CLL, right? 

Janet O'Brien:

Right. 

Andrew Schorr:

Doctor says get retested in a few months.  What happened? 

Janet O'Brien:

My lymphocytes were higher.  

Andrew Schorr:

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?

Janet O'Brien:

Yes. 

Andrew Schorr:

And what did they say? 

Janet O'Brien:

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. 

Andrew Schorr:

Okay.  But then you talked to again one of the docs at the hospital. 

Janet O'Brien:

Our chief lab technologist. 

Andrew Schorr:

The chief lab technologist says but you're young…

Janet O'Brien:

Yeah.  Like, Janet, you're crazy. 

Andrew Schorr:

…can't be.  The machines are wrong. 

Janet O'Brien:

Yeah.  The flow cytometry is wrong.  Get it done again.  

Andrew Schorr:

Okay. 

Janet O'Brien:

They don't know what they're talking about. 

Andrew Schorr:

So get this:  Then she makes a call as a healthcare professional to a hematologist in another city. 

Janet O'Brien:

In Ottawa. 

Andrew Schorr:

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…

Janet O'Brien:

…CLL.  

Andrew Schorr:

And then you later showed everything to a pathologist and somebody you knew.  And the pathologist said…

Janet O'Brien:

…CLL.  Why can't—what more do I need to tell you?  

Andrew Schorr:

Okay.  It goes on from there.  She kept working.  No treatment.  You feel a lump over here. 

Janet O'Brien:

Yeah. 

Andrew Schorr:

Is it inflammatory breast cancer?  Could be.  Was it?  No.  

Janet O'Brien:

No. 

Andrew Schorr:

It turned out to be… 

Janet O'Brien:

…Richter's. 

Andrew Schorr:

Richter's transformation, not good.  Not good.  And so you had what treatment? 

Janet O'Brien:

R?CHOP, which is the standard treatment for Richter's. 

Andrew Schorr:

Okay.  Now, doesn't always work. 

Janet O'Brien:

Yeah. 

Andrew Schorr:

It's heavy, you know, heavy-duty treatment, and you went through this.  So you were first diagnosed in two thousand and…

Janet O'Brien:

…two with CLL. 

Andrew Schorr:

And then finally had the treatment two thousand and? 

Janet O'Brien:

…September 2009 until January 1st, 2010, I had the R-CHOP, six cycles. 

Andrew Schorr:

Okay.  And the good news is? 

Janet O'Brien:

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. 

Andrew Schorr:

Okay.  And you will have some other CLL treatment, if you need to get that. 

Janet O'Brien:

Yeah.  Right now, I'm still back to watch and wait.  

Andrew Schorr:

Okay.  And what's the story here?  So can younger people get CLL? 

Janet O'Brien:

Yes.  

Andrew Schorr:

Yes.  Are today's machines [are] usually right? 

Janet O'Brien:

Yes. 

Andrew Schorr:

Yes.  Okay.  Do you have to face up to it?  Yes.  Richter's transformation, complication of CLL for sure not good, but are there people who do well with the treatment? 

Janet O'Brien:

Yes. 

Andrew Schorr:

Yes.  

Janet O'Brien:

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. 

Andrew Schorr:

And you have. 

Janet O'Brien:

Yes.  I started treatment within a—three weeks of finding the lump. 

Andrew Schorr:

And it's worked out. 

Janet O'Brien:

Yes. 

Andrew Schorr:

Thank you, Janet.  Okay.  Janet O'Brien, I'm going to give you a hug. 

Janet O'Brien:

Thank you. 

Andrew Schorr:

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. 

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Page last updated on January 6, 2016