First name : Serena

Home: Milan, Italy

Type GIST: Carney Triad

Diagnosed: November 2005, age 24

1st Surgery: 10 June 2003 age 21 Surrenectomia (pheochromocytoma)
Surgeon: Dr. Ezio Lattuada - Policlinico di Milano
No Oncologist

2nd  surgery 15 september 2005 age 23 Paraganglioma
Surgeon: Professor Gian Carlo Roviaro -  Policlinico di Milano

3rd surgery 15 december 2005 age 24,   Partial gastrectomy and duodenum for triple GIST
Surgeon: Professor Gian Carlo Roviaro - Policlinico di Milano
Oncologist: Dr Silvia Stacchiotti Istituto dei tumori di Milano

Name:   Katie

Home:   Missouri, USA

GIST Type:  Carney Triad (possibly)

Diagnosed: November 2005, age 28

Mutation status: wild type

First surgery:  Barnes Jewish Hospital (Feburary 2006)
Surgeon:   Dr. Christopher Cronin (partial gastrectomy)
Oncologists:   Dr. Albert Van Amburg (November 2005 - January 2006), Dr. Benjamin Tan (January 2006 - August 2006,                Dr. Leonard White (October 2006 - Present)

Main Oncologist:  Dr. Jeffrey Morgan (February 2006 - Present)
When I have surgery again it will be with Dr. Monica Bertagnolli.

First name : Nora

Home: Tennessee, USA

GIST: initial site Stomach 

Diagnosed March 2001, age 24

1st Surgery Ohio State Arthur James Cancer Center
surgeon: Dr. Michael Walker
1st oncologist: Dr. Manisha Shaw

2nd oncologist, Dr. Suzanne George, Dana Farber, Boston
2nd surgery Feburary 2003.   Dr. Monica Bertagnolli, Brigham and Women's Hospital , Boston, MA

3rd oncologist,  Dr. Matthew McCarty, Fort Loudon Medical center, Thompson Oncology group.  Tennessee.  - 2006 til the present.

First name: Jill

Home: Missouri, USA

Type GIST: Carney Triad
Initial site:Stomach GIST (also found chrondroma in lung, not removed)

Diagnosed: 2006, age 34

Mutation status: testing underway

First name: Stephanie

Home: New Jersey, USA

Type GIST: pediatric GIST, Primary location: stomach, 14 cm

Diagnosed: age 9

Mutation status: wild type

First surgery and diagnosis: Cancer Institute of NJ / Robert Wood Johnson University Hospital
Oncologist: Dr. Peter Cole
Surgeons: Dr. Byrd & Dr. Price

Second surgery: 8/2003 to remove 5 small tumors from stomach and abdominal wall
Memorial Sloan Kettering Cancer Center
Oncologist: Dr. Paul Meyers
Surgeon: Dr. Michael LaQuaglia at Memorial Sloan Kettering

Continuing care at MSKCC since 8/2003.

Also consulted with Dr. Janeway at Dana Farber in 2006.

First name: Kara 

Home: North Carolina, USA

Type GIST: Carney Triad

Diagnosed: February 2004, age 11

Initial diagnosis:  Pitt Memorial Hospital, Greenville, NC;
Dr. Stranjord, oncologist

Initial surgery: 2-13-04 to 4-2-04 at CHOP, Philadelphia
Oncologists: Dr. Susan Rheingold / Dr. Char Whitmer;
Surgeon: Dr. Peter Mettei (GIST removed, unable to remove paraganglioma)
Referred to UNC by Dr. Rheingold for paraganglioma surgery needs

Subsequent surgeries: 4-19-04 to present at UNC Children's Hospital, Chapel Hill, NC
 Oncologist: Dr. Julie Blatt
 Surgeon: Dr. Daniel von Allmen (all surgeries since initial one)

Name: Malorie

Home: Staten Island, NY

Type GIST: Carney Triad

Diagnosed: 2001, age 12

First name: Claudia

Home: Milan, Italy

Type of GIST: Pediatric

Mutation Type: none, Wild Type

Mitotic rate: greater than 5/50 HPF

Diagnosed: 1995, age 10

First surgery: 1995 at the age of 10-1/2, 6 cm mass removed from stomach.  First diagnosed as Leiomyoma.

Second Surgery: in 2000 at the age of 16, 8 cm mass in stomach, partial gastrectomy.
Diagnosed as GIST.
Both surgeries at Ospedale Nuovo San Gerardo, Monza, no oncologist.

Transferred to Istituto Nazionale dei Tumori, Milan, for follow-up since January 2001.  Current oncologist: Dr. Silvia Stacchiotti belonging to Dr. Paolo Casali’s team.

Went to Yale New Haven Hospital (Connecticut) for testing because of anemia when she was 15 and a FNA biopsy incorrectly diagnosed her as having Leiomysarcoma.
Soon after, we got in touch with Dr. George Demetri (at Dana Farber) who suggested a core biopsy.  There were five tumors in her stomach and one was bleeding steadily. This time the diagnosis of GIST was made.

Dr. Suzanne George (Dana Farber) prescribed Gleevec which she took for two weeks but had far too many transfusions from bleeding tumor.

First surgery: A partial gastrectomy was done in June 2002 with clear margins at Yale New Haven Hospital.

She had a recurrence in her stomach in April 2005 and we took her to MSKCC in New York.  She saw an adult oncologist, Dr. Keohan, who gave her 2 cycles of Sutent, but Ashley still had growth in her tumors.

We transferred care to oncologist Dr. Kenneth Miller at Yale, who is now handling her case. 

Second surgery: Ashley had complete gastrectomy in May 2006 and her current CT looks good.  Since she has an apparent 2 cm. chondroma in her lung, she was diagnosed with Carney Triad. 

Name: Sile

Home: New Jersey, USA

Type of GIST:  Carney Triad with pulmonary chrondroma

Diagnosed: 2004, age 14

Mutation type: wild type

1st surgery, 2/3 partial gastrectomy, 2004, at Robertwood Johnson Hospital , New Jersey, Surgeon: Dr.Price.

2nd surgery at MSKCC, surgeon, Dr. LaQuaglia.

She is seeing Dr.Sorrell regularly at Cancer Institute of New Jersey.
She was on Gleevec 800mg -100mg on 2005, stopped due to severe side effects. She was on Sutent 25mg for 3 cycles 2006, stopped due to side effects.

Chondroma indicating Carney triad developed while taking Sutent, no treatment for now.

First name:  Spencer

Home: California, USA

Diagnosed: October 2006,  Age 16

Type GIST: pediatric (gastric tumor, 9.5 cm, in gastric antrum near pylorus valve)

Mutation status: wild type (no mutation)

Initial surgery:  Rady Children's Hospital, San Diego, CA,  October 26, 2006. 
Surgeon: Dr. Mary Hilfiker performed total tumor excision with partial stomach resection
Discharged November 4, 2006 with Gleevec 500 mg per day and Zofran (for nausea).
Oncologist:  Dr. Eric Anderson,  Rady Childrens Hospital, San Diego
 
2nd opinion by Oncologist  Dr. Chow, City Of Hope Hospital, Duarte, California Feb 2007. 
No evidence of disease on PET/CT prior to 2nd opinion at City of Hope.  Adjusted Gleevec dose to 400 mg/day, to continue for one year.  Will follow Spencer with our local onc.

Name:  Rachel

Home:  United Kingdom

GIST type: pediatric GIST

Diagnosed: Dec. 2001, age 15
with gastric tumors and lung nodule

Mutation status: wild type (no mutation)

Biopsy Dec. 2001 confirmed diagnosis of GIST, but tumors had probably been growing for several years at this point.
Surgeries:  none -- originally considered inoperable, affecting entire stomach.

Treatment  with imatinib (Gleevec) begun Jan. 2002 at 400 mg/day.  No change in tumor size, but bleeding from tumors required surgery in October 2002 to stop bleeding.
2002 PET scan showed metastases to liver, lung, and pelvis.
Imatinib increased during 2003 to 500, 600, and then 800 mg/day.
October 2004: surgery required to stop bleeding from tumors, and discontinued Gleevec.
Numerous lung nodules were treated with Itraconazole and presumed to be aspergillis fungal infection.

Treatment with sunitinib (Sutent) begun December 2005 at 50 mg/day.  Severe side effects caused series of dose reductions, finally down to 12.5 mg/day.
CT scan in Feb. 2007 showed stable disease, but increase again in lung nodules. Currently on 12.5mg/day Sutent.

Current physicians:  Dr. Ian Judson at Royal Marsden, plus local physician Dr. Ramesh Bulusu.  The new medical team and new surgeon raised the option of surgery (complete gastrectomy) but for the time being, due to all the complications and other organs that may be involved, Rachel has decided against this.