Castleman disease: "I want to tell everyone to listen to your body and how you feel!"

Hello TamaraGajic, thank you for agreeing to share your story with us here on Carenity.

First of all, could you tell us a bit about yourself?

I'm 39 years old, I was born and raised in Berlin, I have Croatian roots because my parents are from there. At the age of 17 I started training as a nurse and I love working in this profession. At the moment I am working in a dialysis unit.

Last year, in October, I married my boyfriend, with whom I had a long distance relationship for 3 years, and now, thank God, we are living together in Berlin. We don't have children yet, but we would like to.

I was raised religious and live a Christian life, so my church and church work are my biggest hobbies. I enjoy singing in the choir, helping with children's musicals as well as singing in nursing homes. I am a very social person and I like to explore the nature on my electric bike.

You have Castleman disease. Could you tell us more about it?

If I'm being honest, I can't say much about this disease. What I do know is that I get exhausted very quickly and I often feel out of control in my daily life. I frequently have low-grade fever, so as a result I'm not always in control of my emotions. 

You mentioned that you were first diagnosed with unicentric Castleman disease. How long did it take to get the diagnosis and what was your journey to get there?

Hmmmm... Where do I start? Being a leader at the time, which was 2015, I was often overwhelmed with work. At some point, I noticed that I often felt burnt out and tired. On top of that, I often felt like I had a flu-like infection. In the morning, I had a high temperature and sore limbs. Also, I noticed that I would frequently drop things out of my hands so I decided to see a neurologist first. He thought I had developed mild depression and prescribed an antidepressant. But I wasn't sure if it was really depression, so I went back to my family doctor. The blood test showed elevated CRP (C-reactive protein). In the meantime, I was off sick for a longer period of time and changed jobs because I wanted to calm down a bit. So I ignored the problem until I felt worse and worse.

In early 2016, I went to an internist who examined me thoroughly but found nothing, so I was sent to the hospital. At the hospital, they didn't care much about me. A mass was found in my abdomen, but no further attention was paid to it. I was sent away with the line, "you're too young for all the possible diseases, you should exercise more and then you'll be fine," and I was referred to a rheumatologist because I had vague muscle pain. So I went to see a rheumatologist. The rheumatologist went to great lengths to find out what was wrong with me, so I was prescribed many medications.

I was then diagnosed with polymyalgia rheumatica (PMR), which is pretty atypical for my age. From 2017-2019 I was treated with RoActemra, which helped a little, but many symptoms remained. I was not happy with it and talked to every doctor I saw. Then, as I went to Charité (a hospital in Germany) in 2019, I got a second opinion from the rheumatologist, was then admitted as an inpatient, where they immediately tried to send me home, telling me to exercise for a year and everything would be better. This time I did not accept this denial of care and wanted the tumor clarified. A PET-CT scan was done, where a tumor was found and they then did a biopsy. The biopsy results weren't clear, so it was decided that the lymph node would be operated on. It was a very complicated operation and emotionally exhausting.

Finally, they did the biopsy on the lymph node in Würzburg and the diagnosis of Castleman disease was made. I then contacted the hematology department, who said it was unicentric CD, because only one lymph node had enlarged and the blood values were not that conspicuous. However, I wasn't much better physically and was disappointed because I had hoped it would get better after the surgery. At the end of 2020, I had another PET-CT scan to make sure the surgery went well. This time again, an active lymph node was detected in a different area, meaning it was multicentric CD. I had another surgery in February 2021. In short, it took 4 years to be diagnosed and it was an emotional and stressful journey for me.

What happened after your diagnosis?

Unfortunately, I wasn't satisfied with it. My blood levels were constantly being taken and, as I said, a new PET-CT scan was done, but I didn't feel like I was taken seriously about the fact that I still had partial, often severe, deficiencies. I would like to say that it is understandable that not much is known about this disease yet, but I would have liked to have had a better understanding of my situation.

Recently you saw a specialist who diagnosed you with multicentric Castleman disease. How do you feel about it?

I have to say that after I was first diagnosed, I didn't do much research and relied more on the doctors. After the second surgery didn't give me much more relief and they kept saying there was nothing more to be done, I tried to read up on the internet. I then came across the Carenity forum where I registered and read some really good articles about CD and I started to understand Castleman disease better. Then I met Dr. Hoffmann, or rather another patient pointed me in his direction, and I have to admit that talking to Dr. Hoffmann was a great relief to me, because I was not wrong in my suspicions, so I was more relieved than sad. He suggested that I talk to my doctor in Berlin and find a solution with her, which really helped.

What are your plans for the future?

If all goes well, I start infusion therapy (Sylvant) on May 26th* and I really hope it will help me.

*Editor's note: our interview was conducted in May.

Are you satisfied with your care (appointments, diagnosis, treatments, etc.) and the information you received about Castleman disease?

As I mentioned before, I think it's not easy for the doctors because the disease is so rare and more or less unknown. So I think the flow of information is pretty low. I'm even more grateful when there are doctors who are very knowledgeable or getting better, and you can get your voice heard, even if you have to go a long way to do so.

How are you doing now?

I have a lot to do between the fatigue and exhaustion, which is a very big challenge. Right now, thank God, I don't often have any fever, but I do have severe nausea and mild discomfort, as well as mild muscle pain.

Are you supported by your friends and family?

Thank God I have a lot of support. My husband has a lot of patience and understanding for my situation, as do my friends and family. My community also gives me strength and stands by me.

Do you have any advice to share to other members living with Castleman disease?

I would tell everyone to listen to your body and how it feels, because we know our bodies better than the doctors do. I can recommend the Carenity forum and the Castleman disease Facebook pages where you can share. Get well, God's blessing and lots of strength for the road, which is often not easy. Don't give up, we are stronger together!

Any final words?

I would like to thank you for the interest in me and also for the forum, because it gives me/us the opportunity to move forward, to read and to exchange. You're doing really good work. THANK YOU!

Many thanks to TamaraGajic for sharing her story with us on Carenity!

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