Carotid Sarcoidosis

[Klg328]

Hello, I have followed this site for many years, since dx in 2012 at age 55. My CLL is 13q, mutated. On WW. However, this year I began to have major heart problems out of the blue; it ended with me in heart failure and 3rd degree heart block; I now have a pacemaker/defib. My question is this: apparently, after the cardiac MRI, there was found what doctors believe to be cardiac sarcoidosis on the inferior wall of the septum. Has anyone else experienced anything like this? While the device they implanted has worked wonders, I am understandably concerned about the sarcoidosis and believe this is attributed to the CLL, as they could find no other causation. I see my hematologist week after next and will see what she says. Just wondered if anyone out there had anything similar to this?? Thank you in advance. Blessings to each and every one of you.

[lankisterguy Volunteer]

Hi Kig328,

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I am not medically trained and am unfamiliar with the terms you posted, but I was able to find 16 past discussions that included the term Sarcoidosis:

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healthunlocked.com/cllsuppo...

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I hope you can find some useful information there.

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I decided to explore:

Cardiac Sarcoidosis

ottawaheart.ca/heart-condit....

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What Is Cardiac Sarcoidosis?

Cardiac sarcoidosis is a rare disease in which clusters of white blood cells, called granulomas, form in the tissue of the heart. Any part of the heart can be affected, though these cell clusters most often form in the heart muscle where they can interfere with the heart’s electrical system (conduction defects) and cause irregular heartbeats (arrhythmias). Cardiac sarcoidosis can also result in heart failure.

The disease tends to affect younger people, generally between 25 and 45 years old.

Most people diagnosed with cardiac sarcoidosis also have granulomas in other organs of the body, most commonly in the lungs (pulmonary sarcoidosis).

Causes

The causes of cardiac sarcoidosis are not currently known. The disease may be triggered by an over-reaction of the immune system after exposure to an infectious agent (such as bacteria or viruses), chemical, or allergen. It is thought that this causes excessive inflammation and the clustering of white blood cells.

Cardiac sarcoidosis and other types of sarcoidosis may have a genetic component. People who have a parent or sibling with sarcoidosis are about five times more likely to contract sarcoidosis as people without an affected family member

Len

[Klg328 in reply to lankisterguy]

Thank you, Len. I'm sure I'll find out more as I go along. I appreciate your response. Take care.

[GMa27]

I have same markers and was dx at 52. Good markers to have. Had FCR treatment after 12 years on W&W. 2 year remission. I didn't want Ibrutinib due to possible AFib/ heart issues. My Dad had CLL for 30 years and never needed treatment. He did have heart issues ( another reason I was concerned with any meds with heart side effects). He had bypass surgery and stents- did well.

Sorry you have heart issues. Sounds like you have it under control. We may never know if it was the CLL that caused your condition.

Hopefully you have a long W&W. 💕

[Klg328 in reply to GMa27]

Thank you for your reply. This is all a journey for all of us. Ha. Important to not lose faith and keep smiling.