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In Memory

Smsunfl Nathan


Patient Information

Age: 17

Sex: Male

Diagnosed: 3/3/05

Location: Maine

Diagnosis: Hypothroidism and Stage IV Desmoplastic small round blue cell tumor

Hospital Barbara Bush Children's Hospital

First Pediatric Oncologist - Virginia Hamilton, M.D.
Second Pediatric Oncologist - Eric Larsen, M.D.
Pediatric Oncology Surgeon - Baird Mallory, M.D.

Other members of the MCC Pediatric Oncology Team

Pediatric Oncologist Ashley Speckhart, MD
Pediatric Oncologist Anne R. Rossi, MD
Pediatric Pain and Palliative Care SpecialistCraig A. Hurwitz, MD

Hospital University of Pittsburgh Medical Center Shadyside

Adult Oncology Surgeon - David L. Bartlett, M.D.

Clinic

Maine Children's Cancer Program
Dana Farber Cancer Institute/Jimmy Fund Clinic
Karen Albritton, MD
Stem Cell Transplant Program
Jennifer Clark, MD
Leslie Lehmen, MD

No evidence of disease: 1/17/06

Relapse 9/25/06 - New spots found sandwiched between dome of liver and right diaphragm

4/17/07 - 4cm tumor located behind the prostate identified.

2/11/08 - Passed away

Caringbridge Journal

Back

Treatment

  • First Line High Dose Chemotherapy:
HD-VAC = Adriamycin (Doxorubicin);Cytoxan (Cyclophosphamide); Vincristine
Mesna
Ifosfamide, Etoposide
  • Second Line Chemotherapy
Irinotecan, Temozolomide (Temodar)
  • Third Line Chemotherapy
Cytoxan (Cyclophosphamide) ; Topetecan
  • Clinical Trial
OSI-930
  • Off Trial Chemotherapy - First
Sunitinib (Sutent)
  • Off Trial Chemotherapy - Second
Sorafenib (Nexavar)
  • Surgery
Biopsy lympth nodes/bone marrow
Central line (3)
Bi-lateral bone marrow biopsy
Surgical Debulking - 75% tumors removed
Cytoreduction Surgery - all visible tumors removed
Intraperitoneal Hyperthermic Chemoperfusion
Mytomycin C
Surgery to remove twenty 2cm lesions on dome of liver. Removed 90% of right diaphragm, replaced with synthetic
  • Autologous Stem Cell Rescue
Stem cells apheresised (harvested)

No radiation as of August 2006

  • Complication

1st blood clot in lungs 2005 orginate from hepatic artery 2nd Partial hepatic blood clot in liver in 2007

Medication

Levothyroxine Daily - 88ml for Hypothyroidism
Sarcoma and Thyroid Disorders

Time Line

Date Test Treatment Chemicals Result
3/05 Baseline CT , Chest Xray Surgery, Biopsy, Cathetar 0 Central line placed, bone marrow and lympth nodes clear
3/9/05 0 Chemotherapy Cycle 1 -HD-VAC

Diuretic for ascitis

Doxorubicin, Cytoxan, Vincristine + Mesna Diuretic works
3/13/05 CT Blood thinner Heparin ICU 3 Embolisms in lungs. Clots origniated in hepatic artery
3/30/05 0 Chemotherapy Cycle 2 Ifosfamide, Etoposide 0
4/21/05 CT 0 0 20% decrease in tumor size
4/22/05 0 Chemotherapy Cycle 3 HD-VAC Doxorubicin, Cytoxan, Vincristine

Mesna

0
5/12/05 0 Chemotherapy Cycle 4 Ifosfamide, Etoposide 0
5/18/05 0 Central Line Infection Antibiotics Klebsiella, bacterial infection
6/2/06 CT 0 0 Significant tumor shrinkage, primary tumor 50%
6/8/05 0 Chemotherapy Cycle 5 HD-VAC Doxorubicin, Cytoxan, Vincristine + Mesna 0
6/29/05 0 Chemotherapy Cycle 6 Ifosfamide, Etoposide 0
7/19/05 CT 0 0 More shrinkage, disappearance of number tumors
7/27/05 0 Debulking Surgery 0 75% of tumors removed, unable to remove hundreds of tumors on diaphram, one near large bowel, or spleen
8/9/05 CT 0 0 Possible new spots in lung and liver
8/9/05 0 Chemotherapy Cycle 7 HD-VAC Doxorubicin, Cytoxan, Vincristine + Mesna 0
8/9/05 CT 0 0 Oddity about appendix
8/9/05 Biopsy 0 0 Cancer cells still alive
8/31/05 0 Chemotherapy Cycle 8 Ifosfamide, Etoposide 0
9/20/05 0 Chemotherapy Cycle 9 Doxorubicin, Cytoxan, Vincristine + Mesna 0
10/21/05 Baseline CT Surgery-Intraabdominal Hyerthermic chemoperfusion Mitomycin C Removed all visible tumor and spleen
11/05/05 0 Central Line Infection Antibiotics Low grade
11/10/05 CT 0 0 Spots on lung
11/14/05 0 Removed Central line 0 0
11/16/05 0 New Central line put in 0 0
11/17/05 0 Chemotherapy 1 Temodar and Irinotecan 0
12/13/05 0 Chemo 2 Temodar and Irinotecan 0
1/6/06 Blood test - elevated eosinophile 0 0 Unusually high eosinophile levels
1/17/06 CT 0 0 No evidence of disease
1/17/06 0 Chemo 3 Temodar and Irinotecan 0
2/14/06 0 Chemo 4 Temodar and Irinotecan 0
3/31/06 0 Chemo 5 Temodar and Irinotecan 0
4/11/06 CT - Chest/pelvis/abdomen 0 0 No evidence of disease
4/24/06 0 Chemo 6 Temodar and Irinotecan 0
5/22/06 0 Chemo 7 Temodar and Irinotecan 0
6/06 0 0 0 0
7/12/06 CT 0 0 no evidence of disease
7/14/06 PET 0 0 No evidence of disease
7/31/06 0 0 0 0
8/2/06 0 Day Surgery 0 Remove cental line
9/25/06 CT 0 0 Relapse. 2 spots of concern found on the right between top of liver and diaphragm.
10/24/06 CT 0 0 Full body scan. Two spots about 1 cm can now be clearly seen
10/27/06 0 0 0 Consultation at Dana Farber Jimmy Fund Clinic. More chemo, possible stem cell and/or radiation.
11/6/06 Ultrasound 0 0 0
11/8/06 0 Surgery 0 Central line
11/9/06 PET scan 0 0 2-3 spots about 1cm each lit up. No other cancer seen.
11/13/06 0 Chemo 1 Cytoxan and Topetecan 0
12/04/06 0 Chemo 2 Cytoxan and Topetecan 0
12/18/06 0 0 Bi-lateral bone marrow biopsy Bone marrow clear of disease.
12/21/06 CT to check response of 2 rounds of chemo 0 0 Nodules between liver and diaphragm unchanged. No new growth.
1/4/07 0 0 0 Consultation at Dana Farber about Stem Cell Rescue
1/15/07 0 Chemotherapy - Cycle 1 Ifosfamide, Etoposide 0
1/30/07 0 Stem Cell Harvest at Boston Childrens Hospital 0 Got enough in 2 days
2/5/07 PET 0 0 Cancer unchanged, no new spots
2/6/07 0 Chemotherapy - Cycle 2 Ifosfamide, Etoposide 0
2/11/07 0 Low blood count 0 Blood transfusion (2 units)
2/26/07 0 Chemotherapy Temodar and Irinotecan 0
3/5/07 CT 0 0 Cancer unchanged, suspicious spot on lower lobe of liver
3/6/07 MRI 0 0 Found partial hepatic blood clot. Spot is benign, fluid filled cyst.
3/22/07 Chest x-ray 0 0 Baseline for surgery
3/28/07 0 Surgery to remove cancer on dome of liver 0 Removed all visible signs of tumor. About 20 quarter sized tumors on right diaphragm. Removed 90% of right diaphragm and for margins a slice of the liver.

The tumors had been pressing down on the dome of liver and had not penetrated the liver membrane.

4/12/07 0 Chemotherapy Cytoxan and Topetecan 0
4/27/07 CT 0 0 Area of concern in pelvic area. Diaphragm clear.
4/30/07 Ultrasound 0 0 Liver looks clear.
5/4/07 MRI 0 0 Confirm mass in pelvis, unclear what it is
5/7/07 PET 0 0 Lighting up in pelvic area, confirmed disease
5/17/07 Endoscopic Ultrasound 0 0 Confirmed 4cm mass behind prostate
6/07 0 Chemotherapy Irinotecan, Temodar Small spot of disease between liver and diaphragm. Decided to not do surgery.
7/07 0 Chemotherapy Irinotecan, Temodar 0
8/20/07 0 Clinical Trial 0SI-930 0
9/07 PET Clinical Trial 0SI-930 Scans of tumors not as bright as one taken in August
10/31/07 CT Clinical Trial 0SI-930 Stopped clinical trial. New growth along right pleural lining of lung.
11/07 0 Chemotherapy - Sutent 0 0
12/22/07 CT 0 Stopped sutent as he was having intestinal spasms CT showed little change from last one. Hospitalized for four days.
12/07 0 Chemotherapy changed from Sutent to Sorafibnib 0 0
1/8/08 0 0 0 Hospitalized with fluid in lung, breathlessness, and lower back pain on right side
1/24/08 CT Disease has grown and spred rapidly since last scan, now covering right lung, diaphragm, chest wall, liver . . like frosting.
1/25/08 0 0 0 Home on hospice
2/11/08 0 0 0 Passed away


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