Table 1.

Clinical characteristics and prevalence of symptoms as reported on the ECD-SS

CharacteristicN*%*
Age, y 56.1 (median) 18-77 (range) 
Sex   
 Male 28 56 
 Female 21 42 
 Unknown 1 2 
Race   
 White 46 92 
 African American 1 2 
 Asian 2 4 
 Unknown 1 2 
Self-reported disease locations   
 Bone 36 72 
 Skin 8 16 
 Brain 23 46 
 Lungs 8 16 
 Heart 14 28 
 Kidneys 23 46 
 Eyes 16 32 
 Spine 9 18 
Treatment at time of completing ECD-SS   
 Targeted therapy† 27 54 
 Conventional therapy‡ 9 18 
 Targeted and conventional therapy 1 2 
 No current treatment 9 18 
 Unknown 4 8 
Neurologic or psychological symptoms   
 Memory problems (forgetfulness, repeating questions or statements) 26 52 
 Depression or sadness 25 50 
 Stress/anxiety 25 50 
 Trouble with balance or walking 25 50 
 Short-tempered 21 42 
 Discouragement 19 38 
 Weakness of the arms or legs 18 36 
 Mood swings 17 34 
 Trouble with dexterity/coordination 17 34 
 Difficulty concentrating or paying attention 17 34 
 Numbness or tingling in hands or feet 15 30 
 Ringing in the ears (tinnitus) 14 28 
 Speech difficulties 13 26 
 Choking (while eating or drinking) 11 22 
 Difficulty swallowing 11 22 
 Dizziness 11 22 
 Head rush or light headedness or spinning sensation (vertigo) 10 20 
 Headache 8 16 
 Inappropriate crying 3 6 
 Inappropriate behavior 3 6 
 Personality changes 2 4 
 Inappropriate laughter 1 2 
Constitutional or other symptoms   
 Fatigue or sleepiness 36 72 
 Decreased sexual interest 16 32 
 Frequent or excessive urination 15 30 
 Insomnia or difficulty sleeping 14 28 
 Sudden urge to urinate 13 26 
 Night sweats 12 24 
 Inability to sleep due to pain 11 22 
 Itchy skin 11 22 
 Rash or skin problems 11 22 
 Frequent napping 10 20 
 Swelling of the arms or legs (edema) 10 20 
 Inability to drive 8 16 
 Hot flashes 7 14 
 Inability to sleep lying down 7 14 
 Problems tasting food 4 8 
 Changes in smell 3 6 
 Pounding or racing heart (palpitations) 3 6 
 Other problem that was not listed or I do not have any symptoms. 3 6 
 Fever 2 4 
 Hyperhidrosis (excessive sweating) 2 4 
 Urinary incontinence 2 4 
 Urinary tract pain 1 2 
Gastrointestinal symptoms   
 Dry mouth 15 30 
 Diarrhea 13 26 
 Abdominal pain 10 20 
 Decreased appetite 7 14 
 Nausea 7 14 
 Dental problems 3 6 
 Ulcers or other stomach problems 1 2 
 Vomiting 0 0 
Pain   
 Aching bones or joints 28 56 
 Pain 18 36 
 Aching muscles 14 28 
Visual symptoms   
 Blurred vision 11 22 
 Changes in vision 6 12 
 Double vision 5 10 
Respiratory symptoms   
 Cough 9 18 
 Shortness of breath (in general) 7 14 
 Trouble breathing at night 3 6 
 Trouble breathing/shortness of breath (in general) 1 2 
 Hypoxia (air hunger from low oxygen) 1 2 
Most common in patients on no treatment (N = 9)   
 Stress/anxiety 8 89 
 Fatigue or sleepiness 7 78 
 Memory problems 7 78 
 Depression or sadness 6 67 
 Aching bones or joints 6 67 
Most common in patients on conventional therapy (N = 9)   
 Short-tempered 5 56 
 Difficulty concentrating or paying attention 5 56 
 Aching bones or joints 5 56 
 Pain 5 56 
 Fatigue or sleepiness 5 56 
Most common in patients on targeted therapy (N = 27)   
 Fatigue or sleepiness 19 70 
 Depression or sadness 13 48 
 Trouble with balance or walking 13 48 
 Memory problems 13 48 
 Aching bones or joints 13 48 
CharacteristicN*%*
Age, y 56.1 (median) 18-77 (range) 
Sex   
 Male 28 56 
 Female 21 42 
 Unknown 1 2 
Race   
 White 46 92 
 African American 1 2 
 Asian 2 4 
 Unknown 1 2 
Self-reported disease locations   
 Bone 36 72 
 Skin 8 16 
 Brain 23 46 
 Lungs 8 16 
 Heart 14 28 
 Kidneys 23 46 
 Eyes 16 32 
 Spine 9 18 
Treatment at time of completing ECD-SS   
 Targeted therapy† 27 54 
 Conventional therapy‡ 9 18 
 Targeted and conventional therapy 1 2 
 No current treatment 9 18 
 Unknown 4 8 
Neurologic or psychological symptoms   
 Memory problems (forgetfulness, repeating questions or statements) 26 52 
 Depression or sadness 25 50 
 Stress/anxiety 25 50 
 Trouble with balance or walking 25 50 
 Short-tempered 21 42 
 Discouragement 19 38 
 Weakness of the arms or legs 18 36 
 Mood swings 17 34 
 Trouble with dexterity/coordination 17 34 
 Difficulty concentrating or paying attention 17 34 
 Numbness or tingling in hands or feet 15 30 
 Ringing in the ears (tinnitus) 14 28 
 Speech difficulties 13 26 
 Choking (while eating or drinking) 11 22 
 Difficulty swallowing 11 22 
 Dizziness 11 22 
 Head rush or light headedness or spinning sensation (vertigo) 10 20 
 Headache 8 16 
 Inappropriate crying 3 6 
 Inappropriate behavior 3 6 
 Personality changes 2 4 
 Inappropriate laughter 1 2 
Constitutional or other symptoms   
 Fatigue or sleepiness 36 72 
 Decreased sexual interest 16 32 
 Frequent or excessive urination 15 30 
 Insomnia or difficulty sleeping 14 28 
 Sudden urge to urinate 13 26 
 Night sweats 12 24 
 Inability to sleep due to pain 11 22 
 Itchy skin 11 22 
 Rash or skin problems 11 22 
 Frequent napping 10 20 
 Swelling of the arms or legs (edema) 10 20 
 Inability to drive 8 16 
 Hot flashes 7 14 
 Inability to sleep lying down 7 14 
 Problems tasting food 4 8 
 Changes in smell 3 6 
 Pounding or racing heart (palpitations) 3 6 
 Other problem that was not listed or I do not have any symptoms. 3 6 
 Fever 2 4 
 Hyperhidrosis (excessive sweating) 2 4 
 Urinary incontinence 2 4 
 Urinary tract pain 1 2 
Gastrointestinal symptoms   
 Dry mouth 15 30 
 Diarrhea 13 26 
 Abdominal pain 10 20 
 Decreased appetite 7 14 
 Nausea 7 14 
 Dental problems 3 6 
 Ulcers or other stomach problems 1 2 
 Vomiting 0 0 
Pain   
 Aching bones or joints 28 56 
 Pain 18 36 
 Aching muscles 14 28 
Visual symptoms   
 Blurred vision 11 22 
 Changes in vision 6 12 
 Double vision 5 10 
Respiratory symptoms   
 Cough 9 18 
 Shortness of breath (in general) 7 14 
 Trouble breathing at night 3 6 
 Trouble breathing/shortness of breath (in general) 1 2 
 Hypoxia (air hunger from low oxygen) 1 2 
Most common in patients on no treatment (N = 9)   
 Stress/anxiety 8 89 
 Fatigue or sleepiness 7 78 
 Memory problems 7 78 
 Depression or sadness 6 67 
 Aching bones or joints 6 67 
Most common in patients on conventional therapy (N = 9)   
 Short-tempered 5 56 
 Difficulty concentrating or paying attention 5 56 
 Aching bones or joints 5 56 
 Pain 5 56 
 Fatigue or sleepiness 5 56 
Most common in patients on targeted therapy (N = 27)   
 Fatigue or sleepiness 19 70 
 Depression or sadness 13 48 
 Trouble with balance or walking 13 48 
 Memory problems 13 48 
 Aching bones or joints 13 48 
*

Columns 2 and 3 represent number and percent of patients, respectively, except as noted in row 1.

†

Vemurafenib, dabrafenib, cobimetinib, trametinib, or dual BRAF/MEK therapy.

‡

Corticosteroids, interferon, anakinra, tocilizumab, methotrexate.

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