Just diagnosed with Castleman's Disease: Anyone else?

Posted by jeanette527 @jeanette527, Dec 22, 2018

I have just been diagnosed with Castleman's disease which as I understand is somewhat rare. Has anyone had any experience with this condition?

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Hi @jeanette527,

Castleman disease is indeed a rare disorder that involves an overgrowth of cells in your body's lymph nodes. Here’s some information from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/castleman-disease/symptoms-causes/syc-20370735

I’d encourage you to view these older discussions where @rudyn01 @darci73 @ginachick2383 @slocke have talked about Castleman disease:
– hyaline vascular multicentric castlemans disease https://connect.mayoclinic.org/discussion/hyaline-vascular-multicentric-castlemans-disease/
–Benign reactive lymphoid hyperplasia https://connect.mayoclinic.org/discussion/benign-reactive-lymphoid-hyperplasia/

Could you share a bit more, @jeanette527? Did you have any symptoms such as enlarged lymph nodes that led to the diagnosis? Has your doctor outlined any next steps for managing this condition?

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I have just now been diagnosed and the doctor feels infusions of of Situximab is the treatment to work with. I will see him again next month as they called to say he wants to draw more blood and to talk to me. So I should know more then.

In 2016 I had a chest X-ray as part of a physical. Nodes and masses were found in both lungs and was advised to consider them malignant. After scans and a needle biopsie in the largest mass cancer was not found. I then had a nodule removed from the left lung and after about 9 weeks of pathology test, the diagnosis was Multifocal Pulonary Nodular Lymphid, Hyperplasia. The mass and nodules have stayed stable but my sed rate for inflammation has remained between 96-104 except when I was on prednisone for 4 months it dropped down to the 50's then. The normal range should be 0-20. Last year my test results were sent to the Mayo Clinic for further pathology and they were in agreement with the original diagnosis.
Because the inflammation has not changed, my pulmonologist has referred me to an hematologist for further testing. After many blood test, he said the test results were Classic Castleman's disease.
Throughout all of this I have been asymptomatic. I am 74 so I don't know if the tiredness I get is aging or disease! For the most part I am fine except for a lot of stiffness which usually goes away when I move about.
I did have an enlarged lymph node for a while but it seemed to have gotten smaller. The last cat scan does show a slight enlargement.

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Thank you. I joined the CDCN and welcomed all the information.
I will have my third visit with the doctor next week. I has discussed treatment with Siltiximab. I feel good and have not symptoms. Just blood tests that are classic.

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@darci73

Hello! I’m sorry that you are having to go through a rare disease diagnosis with your son. My name is Mileva Repasky and I am the Director of Patient Engagement within the Castleman Disease Collaborative Network. My daughter was also diagnosed with a different subtype of Castleman disease when she was 18 months old. The unknowns can be scary. I want to let you know that you are not alone. There is an amazing organization working to find a cure for this disease and we have a global registry of patients, loved ones and doctors. Please join the CDCN community.

It stands for Castleman Disease Collaborative Network. In addition to registering as a patient/loved one I would love to connect with you guys and offer some additional information and resources to help.

If you send me a personal message I can get you some information and hopefully get you guys connected to the right people who can help!

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@jeanette527

I have just now been diagnosed and the doctor feels infusions of of Situximab is the treatment to work with. I will see him again next month as they called to say he wants to draw more blood and to talk to me. So I should know more then.

In 2016 I had a chest X-ray as part of a physical. Nodes and masses were found in both lungs and was advised to consider them malignant. After scans and a needle biopsie in the largest mass cancer was not found. I then had a nodule removed from the left lung and after about 9 weeks of pathology test, the diagnosis was Multifocal Pulonary Nodular Lymphid, Hyperplasia. The mass and nodules have stayed stable but my sed rate for inflammation has remained between 96-104 except when I was on prednisone for 4 months it dropped down to the 50's then. The normal range should be 0-20. Last year my test results were sent to the Mayo Clinic for further pathology and they were in agreement with the original diagnosis.
Because the inflammation has not changed, my pulmonologist has referred me to an hematologist for further testing. After many blood test, he said the test results were Classic Castleman's disease.
Throughout all of this I have been asymptomatic. I am 74 so I don't know if the tiredness I get is aging or disease! For the most part I am fine except for a lot of stiffness which usually goes away when I move about.
I did have an enlarged lymph node for a while but it seemed to have gotten smaller. The last cat scan does show a slight enlargement.

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@jeanette527

I am glad that you connected with our organization the CDCN. We hate to see new patients diagnosed with this disease and I know how scary all the unknowns can be, but being apart of our organization and connecting with other patients, loved ones, volunteers, staff, doctors and researchers can be very helpful. I am happy to hear that you have remained asymptomatic and that your hematologist is taking steps to get you proper treatment. If you would like i could email you our patient toolkit and provide you with some useful resources.

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@cdwarrior17

@jeanette527

I am glad that you connected with our organization the CDCN. We hate to see new patients diagnosed with this disease and I know how scary all the unknowns can be, but being apart of our organization and connecting with other patients, loved ones, volunteers, staff, doctors and researchers can be very helpful. I am happy to hear that you have remained asymptomatic and that your hematologist is taking steps to get you proper treatment. If you would like i could email you our patient toolkit and provide you with some useful resources.

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Thank you. Information and the tool kit would be welcome.

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I had infusions every three weeks of Siltuximab from January to November. Inflammation is now zero, lab test are great, and the masses and node in my lungs are way reduced. I won't see the doctor until April for more lab work.

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