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Adult Langerhans cell Histiocytosis and CMML
Blood Cancers & Disorders | Last Active: Mar 16, 2022 | Replies (22)Comment receiving replies
Hello @cblowers1. I'd like to start by inviting @javajude, who recently talked about their son going in for treatment for CMML. I'd like to also invite back to Connect, @teammeadows, @jzier, and @tbone45 who did mention they had CMML as well.
I had an opportunity to sit down with Dr. Go of Mayo Clinic Rochester to discuss Erdheim-Chester disease and the histiocytosis working group here, https://connect.mayoclinic.org/page/hematology/newsfeed-post/erdheim-chester-disease-ecd-what-is-it-and-what-are-the-signs-and-symptoms/. Included in that blog is the Mayo Clinic Histiocytosis Working Group Consensus Statement for the Diagnosis and Evaluation of Adult Patients With Histiocytic Neoplasms: Erdheim-Chester Disease, Langerhans Cell Histiocytosis, and Rosai-Dorfman Disease, https://www.mayoclinicproceedings.org/article/S0025-6196(19)30273-3/fulltext that does contain a lot of information on the histiocytosis diseases and may be of some interest to you.
@cblowers1, you mentioned the hydrea has helped manage the symptoms outside of occasional flare ups. Has this allowed you to return to a more 'normal' routine and activity? How do you tolerate the drug?
Replies to "Hello @cblowers1. I'd like to start by inviting @javajude, who recently talked about their son going..."
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At my annual clinic visit last summer I met with Dr. Go at Mayo, Rochester, and we had a good discussion concerning possible treatments for the Langerhans cell Histiocytosis. My LCH was diagnosed at Mayo in 2016. My CMML had just been diagnosed. I am receiving most of my care at Dana Farber Cancer Institute in Boston because it is closer to my home, however, I still visit Mayo Clinic annually and Dr Go said that he planned to discuss my case with the histiocyte disorders task force.
I have been taking hydroxyurea capsules since mid September and have experienced minimal side effects. My doctor recommended taking it at bedtime, since nausea is often experienced and he thought that I might sleep through that. I have not noticed that problem. I wake up in the night with a headache about 2-3 times a week. These headaches are not severe and if they are not gone by the time I get up in the morning, they are gone by 11 or so in the morning. I had not had headaches in several years, so I blame it on the Hydrea, although it could be from the blood diseases.