Neuroendocrine tumor

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What is neuroendocrine tumor?

A neuroendocrine tumor is a type of tumor that affects cells of the neuroendocrine system, the system that makes and regulates hormones. These are rare tumors that most often originate in the gastrointestinal tract and lungs, but may also occur in other locations such as the pancreas and thyroid.

Common symptoms reported by people with neuroendocrine tumor

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with neuroendocrine tumor

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Sandostatin)
Type
Prescription Drug
How many have tried
4
Tried for
neuroendocrine tumor (4)
Treatment name(s)

(Somatuline Depot)
Type
Prescription Drug
How many have tried
3
Tried for
neuroendocrine tumor (3)
Treatment name(s)
Type
Surgery
How many have tried
3
Tried for
neuroendocrine tumor (3)
Treatment name(s)
Type
Prescription Drug
How many have tried
2
Tried for
neuroendocrine tumor (2)
Treatment name(s)

(Voltaren Gel)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Afinitor)
Type
Prescription Drug
How many have tried
2
Tried for
neuroendocrine tumor (2)
Treatment name(s)

(Temodar)
Type
Prescription Drug
How many have tried
2
Tried for
neuroendocrine tumor (2)
Treatment name(s)

(Xeloda)
Type
Prescription Drug
How many have tried
1
Tried for
neuroendocrine tumor (1)
Treatment name(s)

(Imodium)
Type
Over the Counter Drug
How many have tried
1
Tried for
diarrhea (1)
Treatment name(s)
Type
Surgery
How many have tried
1
Tried for
neuroendocrine tumor (1)

Data from patients with neuroendocrine tumor, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with neuroendocrine tumor

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Sandostatin)
Perceived effectiveness
for neuroendocrine tumor (3 evaluations)
Side effects
Total evaluations
3
Tried for
neuroendocrine tumor (4)
Treatment name(s)

(Somatuline Depot)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
neuroendocrine tumor (3)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
neuroendocrine tumor (3)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
neuroendocrine tumor (2)
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (2)
Treatment name(s)

(Afinitor)
Perceived effectiveness
for neuroendocrine tumor (7 evaluations)
Side effects
exhaustion fatigue 4 more
Total evaluations
7
Tried for
neuroendocrine tumor (2)
Treatment name(s)

(Temodar)
Perceived effectiveness
for neuroendocrine tumor (3 evaluations)
Side effects
sleepiness
Total evaluations
3
Tried for
neuroendocrine tumor (2)
Treatment name(s)

(Xeloda)
Perceived effectiveness
for neuroendocrine tumor (3 evaluations)
Side effects
diarrhea hand foot mouth disease 2 more
Total evaluations
3
Tried for
neuroendocrine tumor (1)
Treatment name(s)

(Imodium)
Perceived effectiveness
for diarrhea (1 evaluation)
Side effects
increased urination
Total evaluations
1
Tried for
diarrhea (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
neuroendocrine tumor (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with neuroendocrine tumor, who reported starting treatments within the last 5 years.
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Who has neuroendocrine tumor on PatientsLikeMe?


Age
Age Proportion # of patients
<20 1
20s 10
30s 31
40s 86
50s 130
60s 123
70+ 57
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 3
20-29 years 8
30-39 years 13
40-49 years 14
50-59 years 18
60-69 years 12
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 115
Female 333

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 100
Not Diagnosed 7

These charts show data from neuroendocrine tumor patients who have completed their condition history
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