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Last Update: August 28, 2002

Diary of Simon's Stem Cell Transplant

FAQs: Frequently Asked Questions about Simon's Stem Cell Transplant

Chronicle of a Surgery posted July 13, 2002

Below is Simon's treatment plan, which started on December 29, 2001. We have changed course from the original plan and study protocol (COG A3979) in March 2002 because Simon's tumors did not show significant shrinkage on the initial treatment. His treatment since April has been both more effective and generally less disruptive to our lifestyles.

The University of Michigan Cancer Center Treatment Plan for Simon

Treatment Component Starting Date
Cycle A1 Chemotherapy December 29, 2001
Cycle A2 Chemotherapy January 21, 2002
Stem cell collection February 4, 2002
Cycle A3 Chemotherapy February 11, 2002
Cycle A4 Chemotherapy March 7, 2002
Cycle B1 Chemotherapy April 1, 2002
Cycle B2 Chemotherapy April 22, 2002
Cycle B3 Chemotherapy May 12, 2002
Cycle B4 Chemotherapy June 3, 2002
Click here for a full account of Simon's surgery
July 3, 2002
Cycle B5 Chemotherapy July 15, 2002
High-dose Chemotherapy and stem cell transplant August 19, 2002
MIBG Therapy October, 2002
Monoclonal Antibody Therapy ?
13-Retinoic Acid Therapy (6 months) ?
Completion of treatment ?

Chemotherapy. One cycle of chemotherapy lasts 21 days and starts with the infusion of cancer-fighting drugs. Within a week following the infusion, Simon's blood cell counts decrease to a level where he is unable to fight infections on his own and where he is weak and irritable. If he develops an infection during that time, he needs to go back to the hospital for IV antibiotics and blood transfusions. At around day 12 of a cycle his blood counts start to go back up and he starts to feel better. During the last week of each cycle he is likely to be able to return to a normal daily routine, including daycare, travel, etc.

Cycles A started with the infusion of cancer-fighting drugs over a 48-72 hour period. Simon was hospitalized for the infusions and given the drugs Doxorubicin, Cyclophosphamide (Cytoxan), Vincristine, Cisplatin, and Etoposide.

Cycles B consist of  5 half-day infusions outpatient at the Cancer Center over the course of a week. The drugs Simon is receiving are Topotecan (a newer chemo drug, possibly "up and coming" as an "up front" chemo treatment for neuroblastoma) and Cytoxan which he has already had during cycles A. These drugs have low toxicity and Simon tolerates them relatively well. We hope his cancer cells, however, have a very LOW tolerance for this chemo cocktail!

During surgery Simon's two major tumor masses were successfully removed.

High-dose chemotherapy and stem cell transplant. The high-dose chemotherapy necessary to destroy Simonís neuroblastoma cells also destroys his bone-marrow, or stem cells. Stem cells create new blood cells, such as red blood cells, white blood cells, and platelets. During the stem cell transplantation healthy stem cells are infused into Simonís veins. It is likely to take 3 to 6 weeks for the transplant to catch on. During that time Simon will be extremely immuno-compromised and has to stay in the hospital.

Stem cell collection. Simon will receive an autologous stem cell transplant, which means that he will be given his own stem cells that were harvested several months before his bone marrow is destroyed by chemotherapy. For this to happen, he was hooked up to a machine that collected stem cells from his blood. This is possible because at any given time 1% of the stem cells travel in the blood stream to the cavities inside the bones where new, healthy blood cells are produced. 

The stem cells harvested from Simon in February are being stored at Children's Hospital in Los Angeles. Dr. Yanik, the pediatric bone marrow transplant specialist at the University of Michigan hospitals, reported that they were successfully purged and that an amazing number of cells were lost in the purging process: of 64 million stem cells sent, 1-2 million remain, frozen and testing negative for neuroblastoma. This quantity is sufficient for the procedure, and we have an additional, unpurged sample in storage at UM. Although Simon is now officially "off-study", he will still be able to receive his purged cells back.

MIBG therapy involves injecting a radioactive isotope attached to the chemical agent MIBG, which goes directly to neuroblastoma cells. The radiation is thought to zap the neuroblastoma cells directly. Simon's bone marrow and MIBG doctor, Gregory Yanik, was featured in a recent BBC News Online article called "Therapy shrinks advanced tumours". The article gives a good sense of how MIBG therapy is used to treat neuroblastoma.

Monoclonal antibody therapy to "mop up" remaining cancer cells. We have more to learn about this promising-sounding approach to cancer treatment. We would travel to New York's Sloan Kettering Memorial Hospital for Simon to receive it. For now, here's a helpful link.

13-Cis-Retinoic Acid Therapy. 13-cis-retinoic acid is a drug closely related to vitamin A and has been shown to help stop the multiplication of remaining neuroblastoma cells. Simon will have to be on this drug for 6 months.

Additional remedies and supplements

In April 2002, after consultation with Dr. Molly McMullen of Community Supported Anthroposophical Medicine, we put Simon on a regimen of homeopathic remedies to stimulate his body functions (Colchion, Formica, Phosphor, and Mercury) plus the cancer remedy Iscador. Simon receives the Iscador as a subcutaneous injection every other day. The others are administered as drops and powders daily. For more on Iscador, see the National Cancer Institute PDQ on Mistletoe Therapy.

In April 2002 we also started to give Simon Ambrotrose, a dietary supplement that is thought to benefit cancer patients. Ambrotose contains glyconutrients (saccharides or sugars) that are not readily found in our diets but are thought to be helpful in regulating the immune system and enabling the body to fight off cancer. At the beginning it was a challenge to get Simon to take the white powder. In the meantime we've developed a delivery method that is working well: We dissolve the Ambrotose in grape juice, put the suspension in two 10 ml syringes, and squirt it in his mouth.

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