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My Story as a “Young” Person With CLL

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Published on August 18, 2021

CLL Research Provides Hope for My Future

Follow along as CLL patient advocate Sonia Dolinger explains what it was like to be diagnosed at 39. From navigating a cancer diagnosis with young children to going through treatment at a CLL research center, Sonia shares her experience.

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Transcript | My Story as a “Young” Person With CLL

Andrew Schorr: Hello. It's Andrew Schorr once again in California with Patient Power, and joining me from Annapolis, Maryland is Sonia Dolinger, and we are blood brother and sister because we both have chronic lymphocytic leukemia. But as you know, most people are diagnosed in their 60s, 70s, 80s. Not me. I was diagnosed at 45, and, Sonia, you were diagnosed at what age?

Sonia Dolinger: I was diagnosed at 39.

Andrew Schorr: 39. And you had three kids?

Sonia Dolinger: Yeah. I had three children. At the time, they were 12, 11, and 5 years old.

Andrew Schorr: Wow.

Sonia Dolinger: So three young kids. Yeah.

Andrew Schorr: So, swollen lymph nodes, and what else was going on for you that you knew something was wrong?

Sonia Dolinger: So I had been feeling unwell for a few months. Of course, when you're a young mom, oh, that's normal to be tired, but I was really tired to the point where I knew something was off. Labs showed that my white blood cell count was elevated, and we had done a CT scan of my head and neck and knew that I had nodes that were swollen in the cervical area. So that's what we knew, and my primary care doctor was kind of going on a hunt trying to figure it out and put it together, and was primarily looking at viruses to see what was wrong, and of course I suspected CLL.

Andrew Schorr: Right. Well, of course the typical CLL patient is not your age or the age I was diagnosed with. My doctor had no familiarity with somebody younger with CLL. But for our audience that may include people like that, let's talk about your journey a little bit. So first of all, the shock. So you find out it is CLL. It is a cancer. You've got little kids. You've got a husband. My understanding is you were starting a nursing program with the ambition of being a cancer nurse because you'd helped your mother, and you wanted to be devoted to that, and then all of that is kind of turned upside down. How did you cope with that?

Sonia Dolinger: Yeah, that was a tough, tough time. Of course, at the time, we didn't have the medicines that we have now, so then I was made aware that the average life expectancy was somewhere around seven years. And so that was tough. That's a tough pill to swallow. And of course the first thing you do is count, okay, how many years does that make me, and how old will my kids be? So the hardest part was having my children, and imagining them going on without me, and what did that look like. And so I just thought, no, I've got to find a way to do better. It just wasn't acceptable to me. But it was very difficult. Difficult.

Andrew Schorr: Well, you did do better because you connected with others, you were directed to a specialist, first at Georgetown, a noted CLL specialist, and ultimately to a big CLL center at Ohio State. And I understand you entered a clinical trial, obinutuzumab (Gazyva) and venetoclax (Venclexta) and ibrutinib (Imbruvica). And 16 months of that, is that right?

Sonia Dolinger: That's correct. Yes.

Andrew Schorr: Okay. And first of all, it's not easy, right? I understand the ibrutinib, you had a lot of different side effects, but that was two and a half years ago you finished that. No treatment since then. So how are you doing?

Sonia Dolinger: Yeah, I'm happy to say I'm doing a lot better. I feel much better now than both before diagnosis and during treatment. So I've kind of continued to get stronger since, and it's great that I don't need to be on medicine and I feel good. I have energy back and I just started a new business, so I feel like I'm getting back to the world of the living and it's good.

Andrew Schorr: Well, let's mention some of the things you've done along the way. First of all, you worked for the Leukemia & Lymphoma Society with their Pennies for Patients program with little kids, and that's great, and also you continue to volunteer with the LLS. There's another organization I want to mention that you're very devoted to that helped you in Columbus called Hope Hollow. So my understanding is this is a couple that really has provided free lodging, like for you going through treatment and other cancer patients. What a blessing that must have been.

Sonia Dolinger: That's a great word for it. They are a blessing. So when I went to begin this trial, one of my biggest concerns was how am I going to be receiving treatment eight hours away from my home? But at the time, this was the only location offering this triple combo that I was seeking. So the social worker at OSU referred me to Hope Hollow, and Steve and Jane are the founders of the organization, and they do provide lodging for patients seeking treatment in Columbus. They really have done just a wonderful job taking care of patients and giving them that home-away-from-home experience. I can't say enough good things about them. They're really just wonderful people.

Andrew Schorr: Well, we'll be sure to connect with them, and that's really a through-line here, is you connected with knowledge, specialists, leading research. Hope Hollow as far as support there, and you've also worked with the LLS, where I'm sure you've had connections. What would you say to a younger person, although it probably applies to anyone, as far as the importance of making these connections so you can get what's right for you?

Sonia Dolinger: Absolutely. I think it's paramount. I think the best thing a patient can do is to educate themselves about CLL. It's very nuanced. I think it's different from other cancers in that way, because as you're diagnosed, you've got blood throughout your whole body, so you need to understand how this can affect you and then also get in touch with a specialist so that you can relax and know that you're in the best hands possible. Things have changed so much over the years for us and I'm so grateful for that. So also good advice is to not read a journal article from 20 years ago. But, yeah, a new patient should really just take the time to educate themselves, put themselves in the best hands possible, and know that everything will be okay, that we have a lot of great options now.

Andrew Schorr: I think so too. So Sonia, that's the $64,000 question for you, personally. So now we're seven years down the road, got two kids in college, you got a 12-year-old girl, and you have a new business you mentioned in food services. How do you view the future for you now when it was so uncertain when you were diagnosed and when you were probably terrified like all of us?

Sonia Dolinger: Yeah, absolutely. So I feel like my future is bright. I don't allow CLL to hinder any of my choices. I go forward and just one foot in front of the other, but I feel like we're really lucky to live in this time where research has provided so many options for us.

Andrew Schorr: Okay. That gives a lot of hope to other people diagnosed today. And Sonia Dolinger, I want to thank you so much for being with us and I wish you great success in your new business. Thank you for the volunteering you're doing, and thank you for being in a clinical trial, because the trial you're in may pay off and have new approved therapies for a lot of people.

Sonia Dolinger: Absolutely. Well, thank you.

Andrew Schorr: Okay, Andrew Schorr with Sonia in Annapolis. I'm in California. We're all together in this in the CLL community. Remember, knowledge can be the best medicine of all.

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