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The Life Raft Group - Ensuring that no one has to face GIST alone The Life Raft Group - Ensuring that no one has to face GIST alone
My name is Katie. I love to spend time with my son, Connor and husband, Marc.
My name is Katie. I love to spend time with my son, Connor and husband, Marc.
The Life Raft Group - Ensuring that no one has to face GIST alone
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Pediatric and Young Adult GIST Data

Pediatric GIST overview | Pediatric GIST Data | Pediatric GIST FAQs | Radiation Risks for Pediatric Patients | Pediatric GIST References/Links | Pediatric GIST-The New (or forgotten) Kid on the Block

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Reports - All under 30 | Carney's Triad | Pediatric GIST (under 18) | 18 to 24 years old | 25 to 30 years old

Life Raft Group Data

This table lists all of the Life Raft Group members under the age of 30. It is important to note that this group consists of several subgroups; under 18, Carney's Triad, 18 to 2 and 25 to 30. The natural course of the disease will vary between these subtypes and between individual patients.

 

Patient ID

Gender
Misdiagnosed Gist?
Original Cancer Diagnosis
Age at diagnosis
GIST Type
Mutation
Location of Primary Tumor at Diagnosis
Current age
Current Treatment
PG-131
F
FALSE
GIST
11.2
Carney's Triad
Wildtype
Stomach
14.1
None
PG-106
F
FALSE
GIST
12.6
Carney's Triad
Wildtype
Stomach
18.7
None
PG-115
F
FALSE
GIST
14.4
Carney's Triad
Wildtype
Stomach
17.1
None, Mets debulked
PG-125
F
TRUE
LMS
14.9
Carney's Triad
Wildtype
Stomach
30.0
Gleevec 800 mg (long-term)
PG-109
F
TRUE
GIST
15.9
Carney's Triad
Wildtype
Stomach
21.0
None
PG-133
F
FALSE
GIST
28.9
Carney's Triad
Wildtype
Stomach
30.2
Sutent 31.5 mg (Alternates 37.5 & 25)
PG-148
F
FALSE
GIST
30.4
Carney's Triad
Stomach
34.4
?
PG-136
F
FALSE
GIST
34.1
Carney's Triad
Wildtype
Stomach
34.5
None, has chondromas
PG-122
M
FALSE
GIST
17.9
Familial
Kit, exon 11
Small Bowel
19.3
None, NED
PG-120
F
TRUE
Other
7.7
GIST
Wildtype
Stomach
9.8
None, NED
PG-103
F
FALSE
GIST
8.2
GIST
Wildtype
Stomach
12.0
Sutent 25 mg  4/2 schedule
PG-124
F
FALSE
GIST
9.8
GIST
Stomach
11.4
None, NED
PG-137
M
FALSE
GIST
10.0
GIST
Unknown
10.5
None, NED
PG-110
F
FALSE
GIST
10.0
GIST
Wildtype
Stomach
15.4
Sutent 37.5 mg 4/2 schedule
PG-111
F
TRUE
LMS
10.4
GIST
Wildtype
Stomach
22.4
None NED
PG-127
F
FALSE
GIST
10.8
GIST
Stomach
15.7
None, 1 esophageal tumor remaining
PG-112
M
FALSE
GIST
12.3
GIST
Stomach
17.1
None, mets
PG-107
F
TRUE
LMS
12.4
GIST
Wildtype
Stomach
24.7
Gleevec
PG-121
F
TRUE
LMS
12.8
GIST
Stomach
31.6
None?
PG-104
F
FALSE
GIST
13.3
GIST
Stomach
17.7
None, NED
PG-114
M
FALSE
GIST
14.0
GIST
Stomach
16.5
Gleevec 600 mg, mets
PG-101
F
FALSE
GIST
15.3
GIST
Stomach
20.6
Sutent 12.5 mg
PG-132
M
FALSE
GIST
16.1
GIST
Wildtype
Stomach
16.5
Gleevec 500 mg
PG-135
M
FALSE
GIST
18.0
GIST
Wildtype
Stomach
19.6
None, NED
PG-117
F
TRUE
Other
19.2
GIST
Stomach
32.2
Gleevec 400 mg
PG-118
M
FALSE
GIST
19.3
GIST
Stomach
22.3
none, finished adjuvant Gleevec (1 yr)
PG-139
F
FALSE
GIST
19.5
GIST
Stomach
21.1
Neoadjuvant Gleevec 800 mg
PG-100
F
FALSE
GIST
19.6
GIST
Stomach
23.3
None
PG-138
F
TRUE
Other
19.9
GIST
Wildtype
Stomach
34.5
Sutent 31.5 mg (Alternates 37.5 & 25)
PG-108
F
TRUE
Other
20.3
GIST
Small Bowel
29.0
None, NED
PG-102
F
FALSE
GIST
20.6
GIST
Stomach
25.8
Deceased
PG-105
F
FALSE
GIST
21.0
GIST
Wildtype
Stomach
25.5
Sutent 50 mg 4/2 schedule
PG-130
F
FALSE
GIST
21.1
GIST
Stomach
21.8
Gleevec
PG-126
M
FALSE
GIST
21.8
GIST
Small Bowel
23.0
Gleevec 400 mg adjuvant
PG-149
F
FALSE
GIST
22.6
GIST
Stomach
31.5
Deceased
PG-116
M
FALSE
GIST
23.1
GIST
Liver
26.1
Deceased
PG-147
F
TRUE
LMS
23.7
GIST
Stomach
39.9
Deceased
PG-128
M
FALSE
GIST
23.9
GIST
Stomach
27.7
Gleevec + Rapamycin
PG-129
F
FALSE
GIST
24.6
GIST
Stomach
30.7
Gleevec + Rapamycin
PG-123
F
TRUE
Other
25.1
GIST
Wildtype
Stomach
42.3
None
PG-134
M
TRUE
Other
26.0
GIST
Small Bowel
35.2
Sutent 50 mg  
PG-150
F
FALSE
GIST
26.3
GIST
Small Bowel
30.0
Gleevec 800 mg  
PG-152
M
TRUE
Other
26.6
GIST
Large Bowel
28.4
Gleevec 800 mg (responding well)
PG-141
F
FALSE
GIST
26.7
GIST
Small Bowel
28.8
None, NED
PG-142
F
FALSE
GIST
27.1
GIST
Kit, exon 9
Small Bowel
28.3
Gleevec 600 mg adjuvant
PG-154
M
FALSE
GIST
27.6
GIST
Small Bowel
30.6
None, took adjuvant Gleevec for almost 3 years
PG-145
M
FALSE
GIST
27.7
GIST
Stomach
27.9
Sutent
PG-146
M
FALSE
GIST
28.2
GIST
Stomach
30.2
None
PG-155
M
FALSE
GIST
28.2
GIST
 
36.9
None
PG-143
F
FALSE
GIST
28.5
GIST
Abdomen
31.0
None, NED
PG-153
F
FALSE
GIST
28.8
GIST
Small Bowel
33.1
none, had mets, now NED
PG-144
F
FALSE
GIST
28.9
GIST
Stomach
28.9
None, NED
PG-140
M
FALSE
GIST
29.1
GIST
Kit
Small Bowel
31.7
Deceased
PG-156
F
FALSE
GIST
29.7
GIST
Stomach
35.4
Sutent 37.5 mg 4/2 schedule
PG-151
F
GIST
GIST
Stomach
Deceased
PG-157
M
Deceased
All LRG patient members under age 30

 

 

This pediatric portion of the website is dedicated to the memory of Jonathan Montague

1. Gastrointestinal Stromal Tumors in Children and Young Adults.
A Clinicopathologic, Molecular, and Genomic Study of 15 Cases and Review of the Literature. J Pediatr Hematol Oncol  Volume 27, Number 4, April 2005. Sonam Prakash, MD, Lisa Sarran, MS, Nicholas Socci, PhD, Ronald P. DeMatteo, MD, Jonathan Eisenstat, MD, Alba M. Greco, MD,
Robert G. Maki, MD, PhD,{ Leonard H. Wexler, MD,k Michael P. LaQuaglia, MD, Peter Besmer, PhD, and Cristina R. Antonescu, MD

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