For many patients, pain and fatigue are a constant reminder of having Erdheim-Chester Disease. Pain and fatigue can occur in ECD patients regardless of the presence or absence of BRAF mutations. These symptoms may be seen in newly diagnosed patients as well as those that are considered to be in remission* from the disease.

Thanks to the dedication of the knowledgeable medical professionals, there are things that a patient can do to help with pain and fatigue.

Our newest ECD Care Center Network physician, Dr. Gaurav Goyal explains things that can help:

“Cancer related fatigue is a major challenge that we don’t have easy answers to. Exercise is indeed the single most important intervention that can help them. However, the best way to derive benefit is through structured programs targeting at least 150 minutes of exercise a week. Most of the popular gyms and medical facilities offer such programs specific to cancer patients. It can be difficult at times to do strenuous exercise if there are interfering symptoms. In that case, may discuss with your physician regarding alternative options (yoga, water exercises, etc.)”

Dr. Goyal also mentioned some other options that patients could discuss with their physicians:

• Concomitant use of other psychoactive medications that can cause/worsen fatigue- opioids, sleep medicine etc.
• Lack of good sleep- may discuss treatments for sleep and anxiety
• Pharmacologic options- may consider using stimulants like modafinil and methylphenidate
• Cognitive behavioral therapy and psychotherapy
• Mind-body interventions- mindfulness meditation, yoga, etc. There are numerous places in most cities that offer free of cost services for these methods.

*There is currently no cure for ECD. Remission is referenced when the disease is at a dormant/inactive state.

Below are links that contains more information regarding this topic:

https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-fatigue/art-20047709

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fatigue/what-is-cancer-related-fatigue.html

https://youtu.be/_A2KIbcb4tk : Dr. Roei Mazor talks about Daily Care for ECD Patients.

https://youtu.be/QcEVBl9bTpY : Patients and families Ask the Experts at the 2019 Patient and Family Gathering.

Other amazing and informative videos can be found on our YouTube channel. https://www.youtube.com/channel/UCYR3skRhqAFWC5PTOGv34JQ/featured

 

As a patient or caregiver, what have you found that helps you? Visit our ECD Facebook Group to discuss this further with other ECD patients and caregivers!

You can also email your responses to chesnee.green@erdheim-chester.org.