- \n
- \n
- \n
- Cardiac monitoring.<\/strong> For patients with cardiac involvement, an additional cardiac and\/or aortic evaluation should be performed every three months until the ECD is stabilized with treatment. This is often performed with an ultrasound of the heart, called an echocardiogram, or in some cases an MRI of the heart. At this point, studies are often extended to every six months, or longer later in treatment. A periodic electrocardiogram is also required for patients treated with BRAF inhibitors.<\/li>\n
- CNS monitoring.<\/strong> If CNS involvement is found or suspected, MRI evaluation of the brain with specific studies on the cerebellum \u00a0should be repeated every three months until progression is stabilized with treatment.\u00a0At that point, studies are often reduced to once every six to twelve months.<\/li>\n
- Scans that might be considered for some patients.<\/strong> PET\/CT scans monitor the activity and extent of disease and response to therapy.\u00a0 As advised by a physician, these tests might be considered every 3 to 6 months until the disease is stabilized.<\/li>\n
- Pituitary\/hormone monitoring.<\/strong> An evaluation of the pituitary function is suggested for some patients.\u00a0A treating physician will consider whether hormone levels, including testosterone, ADH, thyroid hormones, insulin, ACTH, and PTH testing by an endocrinologist (hormone specialist) is needed. The pituitary can also be examined with MRI scans.<\/li>\n
- Skin monitoring.<\/strong> For patients on BRAF- and\/or MEK- inhibitors, a skin exam should be performed every three months after starting therapy, extending to every 6-12 months once the disease is stabilized.<\/li>\n
- Eye monitoring.<\/strong>For patients on MEK inhibitors, a dedicated retinal dilated exam is recommended within 4-6 weeks of starting treatment and then can be followed up every 3-6 months or as clinically indicated.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n
Physical Therapy, Occupational Therapy, Speech Therapy<\/h3>\n
In addition, ECD patients need early initiation of physical therapy services.\u00a0 Depending upon\u00a0the patient\u2019s\u00a0symptoms<\/u><\/a>, this may include physical therapy, occupational therapy, and\/or speech\/swallowing therapy.\u00a0 Patients and doctors report this is an important part of treatment management that should not be overlooked.<\/p>\n
Psychological Considerations<\/h3>\n
Finally, any patient experiencing psychological or psychosocial issues should discuss this with their doctor. Struggling with worry, anxiety, sadness, and even depression is common for ECD patients, and\u00a0treatments<\/u><\/a>\u00a0can help.\u00a0 Patients are encouraged to continue with social interactions and leisure activities they enjoy.\u00a0 Seeking counseling and getting involved with the ECDGA through offered programs have also been found to help patients.<\/p>\n
Survivorship Needs<\/h3>\n
- \n
- \n
- \n
- Fatigue <\/strong>is a significant issue for patients with ECD, often due to the disease itself and treatment side effects. Although few interventions have been validated to improve this problem, several approaches are recommended:<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n
- \n
- \n
- \n
- \n
- \n
- Exercise<\/strong>: Clinicians should strongly recommend exercise (aerobic, resistance, or a combination) whenever possible.<\/li>\n
- Cognitive Behavioral Therapy (CBT)<\/strong>: Clinicians should recommend CBT, with or without hypnosis.<\/li>\n
- Mindfulness-Based Programs<\/strong>: Clinicians should recommend mindfulness-based programs to reduce fatigue and cancer-related stress.<\/li>\n
- Tai Chi or Qigong<\/strong>: Several studies have shown positive results in reducing fatigue in cancer patients.<\/li>\n
- Pharmaceutical Intervention<\/strong>: Psychostimulants have not shown benefits for fatigue in cancer patients. Antidepressant treatment can be used for patients with depressive\u00a0symptoms<\/u><\/a>, though it will not improve fatigue itself.<\/li>\n<\/ul>\n<\/li>\n
- Neurological Disability.<\/strong>A supportive care program is essential for patients with neurological disabilities related to histiocytosis. Occupational therapy and physical therapy are mandatory to improve the quality of life. A neurologist, in collaboration with the supportive care team, is essential to provide a personalized care plan depending on the patient\u2019s disability.\u00a0 Both issues must be discussed with ECD\u00a0specialists<\/u><\/a>\u00a0to distinguish between fatigue or disability related to the cancer itself and treatment intolerance or side effects. [These recommendations are derived from the ASCO report for cancer survivors.]<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,3_4″ _builder_version=”4.27.4″ _module_preset=”default” custom_padding=”0px||||false|false” global_colors_info=”{}”][et_pb_column type=”1_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/10\/Picture155.jpg” _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”3_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
More Information About Surviving with ECD<\/h3>\n
\u00a0See:<\/p>\n
National Comprehensive Cancer Network (NCCN) Survivorship Issues in Adult Patients With Histiocytic Neoplasms.<\/strong><\/a><\/p>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” locked=”off” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” locked=”off” global_colors_info=”{}”]<\/p>\n
Next><\/strong>\u00a0Self Care With ECD<\/a><\/p>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]Last Updated:<\/strong> 03\/17\/2026[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"
Need for Monitoring As a multisystemic disease, Erdheim-Chester Disease must be closely monitored, no matter what treatment a patient might be using. It is recommended that anyone with a\u00a0diagnosis\u00a0of ECD […]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"
Need for Monitoring<\/h3>\r\nAs a multisystemic disease, Erdheim-Chester Disease must be closely monitored, no matter what treatment a patient might be using. It is recommended that anyone with a diagnosis of ECD have the following tests performed periodically to monitor the disease and potential treatment side effects:\r\n
- \r\n \t
- Cardiac monitoring.<\/strong> For patients with cardiac involvement, an additional cardiac and\/or aortic evaluation should be performed every three months until the progression is stabilized with treatment. At this point, studies are often extended to every six months. A periodic electrocardiogram is also required for patients treated with BRAF inhibitors.<\/li>\r\n \t
- CNS monitoring.<\/strong> If CNS involvement is found or suspected, MRI evaluation of the brain with specific studies on the cerebellum should be repeated every three months until progression is stabilized with treatment. At that point, studies are often reduced to once every six to twelve months.<\/li>\r\n \t
- Scans that might be considered for some patients.<\/strong> PET\/CT scans monitor the activity and extent of disease and response to therapy. As advised by a physician, these tests might be considered every 3 to 6 months until the disease is stabilized.<\/li>\r\n \t
- Pituitary\/hormone monitoring.<\/strong> An evaluation of the pituitary function is suggested for some patients. A treating physician will consider whether hormone levels, including testosterone, ADH, thyroid hormones, insulin, ACTH, and PTH testing by an endocrinologist (hormone specialist) is needed.<\/li>\r\n \t
- Skin monitoring.<\/strong> For patients on BRAF- and\/or MEK- inhibitors, a skin exam should be performed every three months after starting therapy, extending to every six months once the disease is stabilized.<\/li>\r\n \t
- Eye monitoring.<\/strong> For patients on MEK inhibitors, a dedicated retinal dilated exam is recommended within 4-6 weeks of starting treatment and then can be followed up every 3-6 months or as clinically indicated.<\/li>\r\n<\/ul>\r\n
Physical (physio) Therapy<\/h3>\r\nIn addition, ECD patients need early initiation of physical (physio) therapy services. Depending upon the patient\u2019s symptoms, this may include physical therapy, occupational therapy, and\/or speech\/swallowing therapy. Patients and doctors report this is an important part of treatment management that should not be overlooked.\r\n
Psychological Considerations<\/h3>\r\nFinally, any patient experiencing psychological or psychosocial issues should discuss this with their doctor. This is not uncommon for ECD patients, and treatments can help. Patients are encouraged to continue with social interactions and leisure activities they enjoy. Seeking counseling and getting involved with the ECDGA through offered programs have also been found to help patients.\r\n
Survivorship Needs<\/h3>\r\n
- \r\n \t
- Fatigue<\/strong> is a significant issue for patients with ECD, often due to the disease itself and treatment side effects. Although few interventions have been validated to improve this problem, several approaches are recommended:\r\n
- \r\n \t
- Exercise<\/strong>: Clinicians should strongly recommend exercise (aerobic, resistance, or a combination) whenever possible.<\/li>\r\n \t
- Cognitive Behavioral Therapy (CBT)<\/strong>: Clinicians should recommend CBT, with or without hypnosis.<\/li>\r\n \t
- Mindfulness-Based Programs<\/strong>: Clinicians should recommend mindfulness-based programs to reduce fatigue and cancer-related stress.<\/li>\r\n \t
- Tai Chi or Qigong<\/strong>: Several studies have shown positive results in reducing fatigue in cancer patients.<\/li>\r\n \t
- Pharmaceutical Intervention<\/strong>: Psychostimulants have not shown benefits for fatigue in cancer patients. Antidepressant treatment can be used for patients with depressive symptoms, though it will not improve fatigue itself.<\/li>\r\n<\/ul>\r\n<\/li>\r\n \t
- Neurological Disability.<\/strong> A supportive care program is essential for patients with neurological disabilities related to histiocytosis. Occupational therapy and physical therapy are mandatory to improve the quality of life. A neurologist, in collaboration with the supportive care team, is essential to provide a personalized care plan depending on the patient's disability. Both issues must be discussed with ECD specialists to distinguish between fatigue or disability related to the cancer itself and treatment intolerance or side effects. [These recommendations are derived from the ASCO report for cancer survivors.]<\/li>\r\n<\/ul>\r\n
More Information About Surviving with ECD<\/h3>\r\n See:\r\n\r\nNational Comprehensive Cancer Network (NCCN) Survivorship Issues in Adult Patients With Histiocytic Neoplasms.<\/strong><\/a>\r\n\r\n
![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/10\/Picture155.jpg\")
<\/a>","_et_gb_content_width":"","cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-38","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/38","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=38"}],"version-history":[{"count":3,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/38\/revisions"}],"predecessor-version":[{"id":162536,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/38\/revisions\/162536"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=38"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}} - Cognitive Behavioral Therapy (CBT)<\/strong>: Clinicians should recommend CBT, with or without hypnosis.<\/li>\r\n \t
- Exercise<\/strong>: Clinicians should strongly recommend exercise (aerobic, resistance, or a combination) whenever possible.<\/li>\r\n \t
- CNS monitoring.<\/strong> If CNS involvement is found or suspected, MRI evaluation of the brain with specific studies on the cerebellum should be repeated every three months until progression is stabilized with treatment. At that point, studies are often reduced to once every six to twelve months.<\/li>\r\n \t
- Cognitive Behavioral Therapy (CBT)<\/strong>: Clinicians should recommend CBT, with or without hypnosis.<\/li>\n
- Exercise<\/strong>: Clinicians should strongly recommend exercise (aerobic, resistance, or a combination) whenever possible.<\/li>\n
- \n
- \n
- Fatigue <\/strong>is a significant issue for patients with ECD, often due to the disease itself and treatment side effects. Although few interventions have been validated to improve this problem, several approaches are recommended:<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n
- CNS monitoring.<\/strong> If CNS involvement is found or suspected, MRI evaluation of the brain with specific studies on the cerebellum \u00a0should be repeated every three months until progression is stabilized with treatment.\u00a0At that point, studies are often reduced to once every six to twelve months.<\/li>\n
- Cardiac monitoring.<\/strong> For patients with cardiac involvement, an additional cardiac and\/or aortic evaluation should be performed every three months until the ECD is stabilized with treatment. This is often performed with an ultrasound of the heart, called an echocardiogram, or in some cases an MRI of the heart. At this point, studies are often extended to every six months, or longer later in treatment. A periodic electrocardiogram is also required for patients treated with BRAF inhibitors.<\/li>\n