Barbara Skonicki: Coping with the Ups and Downs of CLL

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Barbara Skonicki was in her early 40s, a busy soccer mom of four, when abnormal blood work led to a chronic lymphocytic leukemia (CLL) diagnosis. Barbara went through three-and-a-half years of "watch and wait," several rounds of CLL treatment and eventually a transplant, which, unfortunately, was not a cure. Now doing well on an oral therapy, Barbara shares her story and how she deals with the physical—and emotional—ups and downs of life with CLL. 

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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 yo

Hello and welcome to Patient Power. I'm Andrew Schorr. Barbara Skonicki lives near Tampa, Florida. She was in her early 40s and a busy soccer mom of four when an abnormal blood test result gave her the shock of her life—a diagnosis of CLL, chronic lymphocytic leukemia.

Barbara Skonicki:

It just kind of took me off guard. I just was in for a routine physical. I felt a little tired. That’s why I went for my physical. And I guess my blood work came back, and it showed elevated white cells. My doctor didn’t really tell me. He just sent me, I needed to see a blood specialist. So I went to this blood specialist not really knowing that oncology was attached to that. And I felt a little out of place, and I think that’s when I realized I might have cancer. So, you know, it just takes you back a little. I get a little emotional even thinking about it.

But, of course, after I saw the hematologist, he was very, very nice. He told me that I think this is what you have, CLL, but I don’t want you to go home and Google it until we know for sure. And, of course, there’s a weekend involved in that, you know. So I didn’t Google it. I was good. I waited, but, you know, you go through that whole “why me” situation. But I think my doctor handled it really well and explained to me the stage 0 and the watch and wait, it could be for years. And I took that wholeheartedly that it was going to be a long time before I needed treatment.

Andrew Schorr:

For three-and-a-half years, Barbara went through a period of watch and wait where she had no treatment. We asked Barbara how she dealt with her emotions during a time that for many is watch and worry.

Barbara Skonicki:

I didn’t really tell a lot of people about it. My husband and I knew about it for probably the first year, year-and-a-half. We didn’t tell the kids, because I didn’t feel it was something to stress anybody about. And I think that might have helped me a little, because nobody was asking me constantly how I was feeling. And I went on my daily routine. I was a soccer mom. I have four children. Three of them all played competitive soccer at the time. Our oldest son was looking at colleges. I didn’t want to be the reason he didn’t leave Florida.

Andrew Schorr:

I asked Barbara what it was like being diagnosed with a condition in her early 40s that usually affects people in their 70s or even older.

Barbara Skonicki:

It kind of sets you back a little. You’re not sure why. Also I was the first person in my family to ever have cancer. Nobody’s had to deal with that. So no one real close to me in my bloodline especially had had cancer, so that kind of took me back a little too. But I have a pretty positive attitude. That’s how I was raised. I was raised up in the Midwest, and it’s take what you’re dealt—deal with it. So I kind of did in a positive way. I wasn’t going to be negative.

Andrew Schorr:

Barbara’s had several rounds of treatment, including a transplant. Sometimes transplant can be curative, but, unfortunately, for Barbara it has not worked out that way. I asked Barbara how she has dealt with the disappointment.

Barbara Skonicki:

That’s still kind of setting in that that didn’t work out. I had a transplant just over three years ago. And it came back after two years, it came back into my bone marrow. And I was okay with that. It could sit in my bone marrow as long as long as, you know, my blood work seemed fine. It looked like a normal person in my blood work, so I was content with that and stayed positive that it was going stay there for a while. Unfortunately, it didn’t. It showed up about a month ago, and my spleen started affecting. So that was just kind of a shock out of nowhere to me. I was just starting to really get back into shape. I was exercising. I was going to the Y. It just kind of took me back.

Andrew Schorr:

Now Barbara’s on a new oral therapy for CLL. I asked her how it’s working how, has it made a difference?

Barbara Skonicki:

I just started three weeks ago the imbrutinib (Imbruvica), and I noticed change right away in my spleen, because my spleen was giving me like severe pain in my left side. Within three days, that was definitely gone. The lymph node on the side of my neck, that’s been gone, you know, within two weeks that was completely gone. Any my energy, I haven’t known what energy is in five years, so that I’m really excited about. That’s a big one.

Andrew Schorr:

After all Barbara’s been through, all the ups and downs, the different treatments, the disappointments, and the hopes, I asked Barbara how she now sees the future.

Barbara Skonicki:

I’m going to stay positive attitude this is going to work. If I have to even do another transplant, I’ll do it. But I’m really hoping this medication is the answer.

Andrew Schorr:

Thanks to Barbara for sharing her story. I know it can help others who are going through the ups and downs of CLL. And for Barbara we hope from now on it’s only up. Be sure to be signed up for alerts on our website, so you’ll know whenever we post something new. I’m Andrew Schorr. 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 yo

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Page last updated on March 18, 2015