Erdheim Chester Disease: Anyone have this?

Posted by kellymac2011 @kellymac2011, Jan 25 2:16pm

My fiancé was diagnosed with Erdheim Chester Disease. Anyone else have this awful disease?

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

Hi @kellymac2011, welcome. I'm tagging @ecdhope to bring them into this discussion too.

Is this a new diagnosis for your financé?

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About ten months ago

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Hello, I was diagnosed in 2017 with ECD at Mayo. Are you a member of any groups on Facebook? We have a chat group on Facebook on Thursday afternoons if you are interested. Also, the ECD Global Alliance is an excellent support and resource.

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@ecdhope

Hello, I was diagnosed in 2017 with ECD at Mayo. Are you a member of any groups on Facebook? We have a chat group on Facebook on Thursday afternoons if you are interested. Also, the ECD Global Alliance is an excellent support and resource.

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Can you talk a bit more about ECD and you? What tissues or organs are involved in your case and what symptoms are you managing?

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@colleenyoung

Can you talk a bit more about ECD and you? What tissues or organs are involved in your case and what symptoms are you managing?

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ECD is a very rare blood cancer. It affects people differently. It started in my kidneys. I had a pseudotumor around my heart. It is inactive in my left eye-choroid part of the eye that does not appear on any scans only diagnosed by an experienced opthamologist. I was on zelboraf for about a year and then was unable to tolerate the med. After 6 months of being off the med, it came back in my long bones. I am on cotellic now and the disease is inactive. I experience a lot of fatigue and pain mostly when I get tired. I manage my symptoms with exercise and trying to eat right. I also take frequent rest breaks. I am open to anyone that wants to chat.

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@ecdhope

ECD is a very rare blood cancer. It affects people differently. It started in my kidneys. I had a pseudotumor around my heart. It is inactive in my left eye-choroid part of the eye that does not appear on any scans only diagnosed by an experienced opthamologist. I was on zelboraf for about a year and then was unable to tolerate the med. After 6 months of being off the med, it came back in my long bones. I am on cotellic now and the disease is inactive. I experience a lot of fatigue and pain mostly when I get tired. I manage my symptoms with exercise and trying to eat right. I also take frequent rest breaks. I am open to anyone that wants to chat.

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Thank you @ecdhope. I'm confident that @kellymac2011 will be grateful for your willingness to chat. Erdheim Chester Disease is new for her and her financé.

What advice or top tip would you share with someone who has only recently been diagnosed with ECD?

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@ecdhope

Hello, I was diagnosed in 2017 with ECD at Mayo. Are you a member of any groups on Facebook? We have a chat group on Facebook on Thursday afternoons if you are interested. Also, the ECD Global Alliance is an excellent support and resource.

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Hi I don’t have Facebook.

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Thank you so much for sharing. My fiancé too is on Cotellic for ten months. Pet scan every three months. Mostly affecting his long bones his legs are always so swollen and sore.

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