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Linda Weiser: How I Became an Empowered Patient

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Published on June 19, 2014

Linda Weiser had just celebrated her 50th birthday when she learned she had chronic lymphocytic leukemia (CLL) following a routine blood test. After an initial period of shock and disbelief, Linda overcame her fear to thoroughly research the disease, learning all she could to become an empowered patient advocate. Linda shares her story through diagnosis and treatment and how she found the strength to battle a second cancer: basal cell carcinoma.

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Transcript | Linda Weiser: How I Became an Empowered Patient

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.

Hello and Welcome to Patient Power. I'm Andrew Schorr.   Linda Weiser, a Floridian, had just celebrated her 50th birthday. She had a routine blood test. When the results came back, they were not good. She was diagnosed with CLL, chronic lymphocytic leukemia.

Linda Weiser:

I was diagnosed in April of 2010.  It was just a routine blood test that came back, and my white cell count was elevated.  So from there I went and saw a local oncologist, and I was in the wait-and-watch phase for a while, and then I got sent over to Moffitt. February, I think, of 2012 is when I got sent over to see Dr. Pinilla.

The first oncologist I got, I was seeing, I went and saw him, had my appointment that first day.  We did some blood work, and I left his office, you know, kind of wondering why am I even here at the oncologist’s to start with.  So I took a trip up to see my cousins up north, and I came back that following week and had my follow-up appointment with him.

So I went in to see him, and he pretty much came to the table, he had a little CLL booklet in his hand, you know.  He pretty much just put it down on the table and said, “This is what you have, CLL.  You know, read through it, and I'll be back if you have any questions.”  And he proceeded to leave the room, and I could hear him go into other patients' rooms down the hall, you know, and start talking to them.  So, I mean, I was just in total shock.  I couldn't believe it.

So that was my—that was my experience with him, and needless to say I never went back to see him again. And through some people that I knew, I got a wonderful local oncologist and started going to him, and he explained my reports to me and went over everything and took time with me, and he was wonderful.  But that first one, his bedside manner, I couldn't believe it.

Andrew Schorr:

So I asked Linda what was her initial reaction to the diagnosis.

Linda Weiser:

I think I—I cried, you know.  I couldn't believe it.  I remember going back to work that day, and

I pulled my boyfriend back out on the back patio, you know, and I showed him that book that I had gotten, and I said, “Can you—I can't believe it.  They're saying that I have leukemia.”  So I was scared to death.

I didn't know anything about leukemia, had never been around it, didn't have any friends with leukemia, so it just shocked me to death.  And I know there were months—months after that that—I mean I cried.  A cried a lot and like I told Andrew, I would go home at night, I'd go up in my bedroom, and I had myself dying in 30 days.  Every little ache, every little pain, everything I felt, it was is that from the CLL, is that from the disease, you know.  I just didn't know if that was it or not.

But the more I read, the more we researched, the more  got online, the more I talked to people, you know, I learned about the disease and the ins and outs of it, and I learned that, you know, it's not a death sentence. People live many, many—many, many years with CLL, you know, with the right treatment.

I was coming over here to Moffitt, talking to Dr. Pinilla, and I was scared to death of chemotherapy. And he knew from the start that if there was any way to avoid chemotherapy, I didn't want chemotherapy if there was something else out there.  Unfortunately, at the time, all that was there really, he wrote down on a piece of paper, you know, FCR, circled that.  This is the gold standard, and this is—this is what's tried and proven for the treatment for my disease.

So as time went on, I was in that watch-and-wait phase. I was able to wait a little longer, you know, another couple years.  I would go over—come over to Moffitt, and I would beg off an extra month and a month and a month.  And I ended up in the hospital in September of 2012 with pneumonia for almost a week.  And at that time, I knew that treatment was just around the corner, that I had to make a decision.

So I came back over here to Moffitt, Dr. Pinilla about it, and at that point they had started the HiLOG trial over here, which was a high-dose steroid to start with, ofatumumab (Arzerra), which is a monoclonal antibody, and then later down the line I started with lenalidomide, which they also call Revlimid, which is the pill that I'm on today for maintenance.  I take that daily.  But Dr. Pinilla let me make that choice, you know, what I wanted to do.  He told me about the trial and everything.

Andrew Schorr:

Although Linda got very positive news from her participation in a clinical trial for CLL, then came another shock. She was being diagnosed with a second cancer. 

Linda Weiser:

Well, my parents were here last year.  We went out in the sun on the beach for a little while, and my nose started to turn pretty red. So my dad made me go make an appointment with a dermatologist so—because I'd never been to one before.  And having grown up in Florida, you know, I was a sun worshipper and out all the time.

So I went to the dermatologist’s.  They did a couple biopsies, and as it turned out I had a basal cell cancer on my nose, and then I have a place on my chest.  So at the time, I was in the trial here at Moffitt, and the protocol called out that I couldn't do any radiation while I was going through the treatment.  And I think I had pretty much decided I would rather go the radiation treatment versus the most surgery.  My local dermatologist pretty much looked me in the eye back home, and he told me, “You know,” he says, “If you were my wife, I wouldn't do the surgery, I'd do the radiation,” So and he has a very good reputation, does a great job.

Andrew Schorr:

So I asked Linda about enduring the emotional roller coaster facing two different cancers.

Linda Weiser:

Well, I didn't quite understand it.  I know that a lot of people are developing second cancers.  Again, I knew I had this last year.  I just wasn't able to do anything about it at the time.  You know, I guess what I tell everybody is time out, enough is enough.  You know, I mean, two cancers in a short period, you know, that's enough right now.  So I just hope—I hope that, you know, there isn't something else lurking around the corner, and I hope that I stay with this partial response and that the Revlimid does its job and keeps it at bay.

Andrew Schorr:

I want to thank Linda for joining us and sharing her story. Be sure to be signed up for alerts on our website, so we can let you know whenever we post something new. I’m Andrew Schorr. Thanks for watching. Remember, 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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