Chronology

 

 


4/4/02
: I had an incisional biopsy of my tumor (details on biopsy surgery); the tumor is a Ewing's sarcoma/PNET (primitive neuroectodermal tumor). (Information about Ewing's sarcomas, path report)

4/12/02: My first appointment with an oncologist at Memorial Sloan-Kettering. (Details of visit.)

4/15/02: My first appointment at Columbia. (Details of visit.) I decided to go with my treatment at Columbia.

4/16/02: I had a bone scan. The doctor said everything looks all right. There is part of the pelvis that they suggested additional images of.

4/17/02: I had multiple CT scans and blood work. I have what is probably a hepatic cyst on the right lobe of my liver. The rest is fine.

4/18/02: I had an MRI of the tumor to measure its size. It is 5.7 x 5.7 x 9.1 cm -- larger then before. (It was 5.3 x 5.3 x 8.2 cm on 2/28/02.) I have a 13 cm pocket of fluid by the incision; this is what is causing the bulging.

4/19/02: I had a port-a-cath inserted; this will allow for more painless IVs, blood drawing, and nutrition.

4/22/02: Week 1. My first day of chemo; took 4 hours or so. I received vincristine, doxorubicin, and cyclophosphamide.

4/23/02: I received doxorubicin and saline. I had a urine analysis. I had x-rays done of the pelvis, hip, and leg to clear up the issues raised by the bone scan. Nothing interesting showed up in the urine analysis or x-rays.

4/24/02: I received doxorubicin and saline.

4/26/02: I start self-injecting neupogen to speed the recovery of white blood cells. I inject until 5/5/02.

5/1/02: Week 2. Office visit; labs; low WBC (0.8 when the range is 3.54-9.06). I had a MUGA scan (another baseline test) since one of my drugs is hard on the heart. I received vincristine. I had a chest x-ray and another urine analysis, both which came out fine. (MUGA report)

5/6/02: Week 3. I had a pain appointment. We'll try a new med for the foot pain when it occurs next.

5/8/02: Office visit; labs; WBC of 12. I received vincristine. I saw the neurosurgeon; the incision is 75% healed.

5/13/02 - 5/17/02: Week 4. Admission to the hospital for the second course of cycle 1. I received ifosfamide and etoposide for 5 days. I had a consult with PT, the neurosurgeon, and the orthopedist who will do the surgery if needed. The PT showed me how to use the crutches so that I can walk more correctly; the neurosurgeon said that things were going well, and the orthopedist said that he feels surgery will be necessary. My red blood counts were low, but not so low that they transfused me, as they had threatened. I got Protonix to help with the throat burning. I got an injection of Procrit to help with the anemia.

5/18/02: I start self-injecting neupogen until 5/28/02.

5/22/02: Week 5. Office visit; labs; WBC of 1.1, HGB/HCT of 9.2/26.1. (All these values are low.) I received vincristine. X-rays of the foot and ankle were taken due to the ankle swelling that I have; the results only show some bone loss. This might be due to lack of use.

5/24/02: I self-injected Procrit.

5/29/02: Week 6. Office visit; labs; WBC of 36.8, HGB/HCT of 9.8/28.8. I received vincristine.

6/1/02: My period started (lasted thru 6/7/02; very light). Could be part of the cause of the anemia. I self-injected Procrit.

6/3/02: Week 7. Second cycle begins; 3 days of chemo. Labs: WBC: 7.3; HGB/HCT 9.4/27.3; PLT 214. I received doxorubicin and cyclophosphamide.

6/4/02: I received doxorubicin. I vomited before receiving anything. Susan, my nurse, suggested that I take two Kytril in the time before chemo.

6/5/02: I received vincristine and doxorubicin.

6/7/02: I'm trying Compazine for my problems with nausea and vomiting. I start self-injecting neupogen until 6/16/02. I self-injected Procrit.

6/12/02: Week 8. Office visit and labs. WBC: 0.4, HGB/HCT: 7.9/22.5, PLT: 177

6/19/02: Week 9. Office visit and labs. WBC: 41.5, HGB/HCT: 9.2/28.3, PLT: 179

6/24/02-6/28/02: Week 10. Admission to the hospital for the 4th round of chemo. I received ifosfamide and etoposide for 5 days.

6/24/02: WBC: 6; HGB/HCT is 9.8/30.5; PLT 274.

6/26/02: WBC: 5; HGB/HCT is 9.2/29.0; PLT 320.

6/28/02: I got an injection of Procrit to help with the anemia.

6/29/02: ER trip for port infection.

6/30/02: I self-injected Neulasta, which is a one-dose that should replace the 10 doses of Neupogen.

7/4/02: Week 11. MRI of leg to see how the tumor is doing. It is 5.7 x 5.7 x 9.2 cm, just a bit larger then before. There's activity in the bone marrow that looks like the bone marrow working. (MRI report)

7/9/02: Meeting with Dr. Lee to discuss the surgery. I started an antibiotic again for the port.

7/10/02: Week 12. Office visit and labs. WBC: 13.4; HGB/HCT is 11.6/36.2; PLT 167. Full body PET scan; no mets found.

7/12/02: Meeting with Dr. Brennan to discuss the surgery.

7/13/02: I self-injected Procrit.

7/15/02: Visit to oncologist due to port infection. Blood culture was done; came back negative.

7/23/02: Resection surgery performed. (Details of surgery, surgical report, path report, final path report (mentions translocation))

7/25/02: Released from hospital.

8/2/02: Follow-up with Dr. Brennan to remove sutures and to discuss the path report. (Dad's notes on the doctor's appointment.)

8/7/02: Office visit with Keohan. The rest of the sutures were removed.

8/21/02: Consultation with Dr. Schiff.

8/23/02: Radiation therapy simulation.

8/28/02-9/1/02: 5th cycle of chemo; I received a high dose of ifosfamide (2.8mg/m^2/day) for 5 days. Radiation therapy starts. Admission to the hospital for the 5th round of chemo. I repeated some of my base-line scans; the chest CT showed 5 nodules in the lungs (CT report and x-ray of foot, CT report of abdomen and pelvis).

9/1/02: I got an injection of Procrit to help with the anemia.

9/2/02: Spotting started, continued for 11 days.

9/3/02: I start self-injecting Neupogen to speed the recovery of white blood cells. I inject until 9/10/02.

9/9/02: Appointment with the brace shop.

9/11/02: Office appointment. WBC: 32.8; HGB/HCT is 13.4/41.2; PLT 157.

9/16/02-9/20/02: 6th cycle of chemo. I received a high dose of ifosfamide (2.8mg/m^2/day) for 5 days.

9/20/02: I got an injection of Procrit to help with the anemia.

9/21/02: I start self-injecting Neupogen to speed the recovery of white blood cells. I inject until 10/1/02.

9/27/02: Blood labs. WBC: 7.2 HGB: 11.7

10/2/02: Appointment with the brace shop. Got biking brace.

10/2/02: Office visit with Keohan.  Chest CT scan. (CT report)

10/4/02: Period started.

10/7/02: Office visit with Keohan.

10/9/02-10/13/02: 7th cycle of chemo. A cycle of high-dose ifosfamide (2800mg/m^2) for 4 days and etoposide (100mg/m^2) for 3 days.

10/14/02: I start self-injecting Neupogen. I inject until 10/21/02.

10/18/02: Started antibiotic for cellulitis around port.

10/20/02: I self-injected Procrit.

10/21/02: Office visit with Keohan. WBC: 22.8 HGB/HCT: 11.9/35.6 PLT: 164

10/29/02: Period started.

11/6/02: Office visit with Keohan.

11/13/02-11/17/02: 8th cycle of chemo. A cycle of high-dose ifosfamide (2800mg/m^2) for 5 days and etoposide (100mg/m^2) for 3 days.

11/19/02: Period started.

11/19/02: I self-injected Procrit. I start self-injecting Neupogen.

11/25/02: Office visit with Keohan. Got a Procrit injection. WBC: 6.7 HGB/HCT: 11.4/34.0 PLT: 95

12/14/02: Chest, abdomen and pelvis CT scans. (CT report of chest, CT report of abdomen and pelvis).

12/18/02: Office visit with Keohan. I started an antibiotic again for the port. WBC: 3.3 HGB/HCT: 13.0/38.2 PLT: 219

12/20/02: Consult with Maki.

12/21/02: MRI of leg. (MRI report)

1/8/03: Office visit with Keohan to discuss leg swelling.

1/13/03: Appointment with White. Ultrasound of leg.

1/16/03: PFT, resting ECHO, EKG, chest x-ray. CT chest scan 53/3rd Ave.

1/20/03: Appointment with White. Blood work. Port flushing.

1/23/03: Dosing test for inhaled chemo.

1/28/03: Chemo: inhaled doxorubicin.

2/7/03: Removal of port due to it popping out.

2/17/03: Appointment with White. Blood work. PFT. chest x-ray.

2/18/03: Chemo: inhaled doxorubicin.

2/26/03: PFT. Chest x-ray.

3/10/03: Appointment with White. Chest CT report. Blood work. PFT.

3/13/03: Appointment with Keohan.

3/18/03: Appointment with Maki.

3/20/03: Appointment with von Mehren.

3/27/03: Appointment with White. PFT.

3/31/03: Appointment with Dr. Lantis for scheduling of port surgery.

4/3/03: Appointment with von Mehren. EKG, blood, brain MRI, hip x-ray.

4/4/03: Appointment with opthmologist.

4/9/03: Period began.

4/15/03: Port installation surgery. chest CT report, echo report (ejection fraction is 60%).

4/17/03: Appointment with Dr Keohan to check for possible pneumonia. chest x-ray, blood work.

4/24/03: First cycle of ET-743 + Doxil. EKG.

4/26/03: CT report of abdomen and pelvis.

5/3/03: Period began.

5/15/03: 2nd cycle of ET-743 + Doxil.

6/2/03: CT report of chest, CT report of abdomen and pelvis.

6/6/03: Appointment with Keohan.

6/9/03: First cycle of irinotecan and temozolomide.

7/7/03: 2nd cycle of irinotecan and temozolomide. chest x-ray report

7/27/03: CT report of chest CT report of abdomen and pelvis

7/29/03: Appointment with Dr. K.

7/30/03: Paged Keohan in late evening; temp was 100.9.

8/1/03: 1st cycle of gemcitabine and docetaxel.

8/8/03: 2nd cycle of gemcitabine and docetaxel.

8/9/03: Entered hospital thru the ER due to head aches and vomiting; Keohan told us to go in.

8/12/03: Craniotomy.

8/14/03: Chest tube put in.

8/22/03: Chest tube came out.

8/25/03-8/30/03: First cycle of topotecan and Cytoxan.

8/31/03: Injection of Neulasta.

9/2/03: Appointment with Dr Sherr and Dr Isaacson to discuss radiation to chest and brain.

9/3/03: Simulation for whole brain radiation.

9/4/03: First whole brain radiation. WBC: 0.2 HGB: 9. Injection of Procrit.

9/5/03: Simulation for lung radiation.  No whole brain radiation due to lowered WBCs.

9/9/03: Two units of blood and 6 units of platelets transfused. WBC: 1.8; HGB: 6.8; PLT: 18

9/10/03: WBC: 5.0; HGB: 10.4; PLT: 22

9/11/03: WBC: 6.3; HGB: 10.9; PLT: 32; injection of Procrit.

9/12/03: Increased Decadron to 4 times a day, 4mg.

9/16/03: Lung radiation began.

9/17/03: WBC: 13.4; HGB: 11.0; PLT: 206

9/18/03: Increased Keppra to 750 mg/twice a day.

9/19/03: Injection of Procrit.

9/24/03: WBC: 8.5; HGB: 11.6; PLT: 358. 

9/25/03: Decrease Decadron to 3 times a day, 4mg.

9/26/03: Last day of brain radiation.

9/27/03: Injection of Procrit.

10/1/03: Decrease Decadron to 2 times a day, 4mg.

10/5/03: Decrease Decadron to 4mg a day with breakfast.

10/14/03: Brain MRI, chest and abdomen CT, Cancer Center, 1st floor.  Decrease Decadron to every other day (for 7 days, then stop).

10/16/03: Appointment with Keohan; WBC: 7.3; HGB: 12.7; PLT: 114.

10/19/03:  Last Decadron taken.

10/27/03: Appointment with Sherr, simulator appointment, planning CT.

11/3/03-11/21/03:  Radiation of upper abdomen.

11/30/03:  Vomiting multiple times a day. Weight (home): 167

12/1/03:  Vomiting multiple times.  Moved to 5 patches. Started Avian and Decadron for vomiting.  Brain MRI, CR scans.

12/4/03:  Keohan appointment; not good results for scans. Informal results. Procrit injection.

12/9/03:  Entered hospice care.

12/12/03:  Mom's scale: 166 lbs.

Blood work values

A few people have asked for the normal ranges for the blood work values that I report. According to the results, they are:

bulletWBC (white blood count): 3.54-9.06
bulletRBC (red blood count): 4.00-5.20
bulletHGB (hemoglobin): 12.0-15.8
bulletHCT: 35.4-44.4
bulletPLT (platelets): 165-415

[Home]

Copyright 2003 The Shriver Family: Last modified: 01/06/04.