Treatment Plan

The treatment proposed for Stage IV, High Risk Neuroblastoma by Dr. Rapkin  is called Protocol ANBL00P1 This protocol is made up of five components. You can click on any of the underlined words for a hyperlink to more detailed information.

Chemotherapy: An induction round (completed on 3/29/2005) and four subsequent rounds of chemotherapy. Ideally each round of chemotherapy will start 21 days from the first day of the previous treatment. His second round is scheduled to begin on April 15th. This type of cancer cannot be treated with chemotherapy alone, so the purpose of the chemo is to shrink the tumor to make it operable and to clean Trenton's bone marrow.

Surgery: The surgery (Trenton may have 2 surgeries) is to remove all or as much as possible of the primary tumor. Dr. Rapkin has said that the tumor has generally shrunk as much as it is going to after the 3rd chemotherapy treatment and he usually prefers that the tumor be removed then, however sometimes the surgeon would rather wait and see if any additional benefit will be derived from waiting until after the fourth treatment. That will be a decision made between the surgeon and the oncologist at that time.

Bone Marrow Harvest and two Bone Marrow Transplants:

	The type of transplant that Trenton will receive is called an autologous transplant, it uses the patient's own stem cells. Certain diseases do not affect the bone marrow, so the cells are healthy and can be used for the transplant. We really appreciate all the people who have so generally offered to be tested to be a donor for Trenton but we have been told that will not be necessary. The harvest will take place as soon as the doctor deems Trenton's bone marrow free from cancer and the transplants will take place after he has had his surgery and completed his chemotherapy. The transplants will be back to back.  He will have to be in the hospital for a month with each one with one week home in between.
	Radiation:  The radiation will take place after all the above-mentioned treatments have been completed.
	Isotretinoin: This is a biologic treatment to mature any cells remaining in the body to prevent a relapse in the future.
	G-tube/PEG (percutaneous endoscopic gastrostomy): This is the feeding tube. Click the underlined hyperlink for more detailed information.
	PICC Line (Peripherally Inserted Central Catheter):  A thin flexible tube that is inserted into a vein, usually in the bend of your arm. The PICC is then threaded so that the tip lies in one of the large veins in the chest.

In addition to these treatments Trenton is going to the clinic regularly (about twice per week and has a home health care nurse that comes out to his house twice a week to make sure he is doing ok and to see if he needs anything. She will draw labs when there as well.  At the clinic they can give his hemoglobin, potassium, antibiotics and anything else they deem he needs through his port (external catheter).

Bumps in the Road

ROTAVIRUS: -   is a common cause of diarrhea and gastroenteritis in children. Rotaviruses (there are 9 different, but related, types) can be passed from person to person by contact with infected stools, and tends to run rampant in places like day-care centers with a lot of susceptible kids, as well as going through families -- and adults who are not immune can get rotavirus, and sometimes need IV fluids themselves. It usually takes 1 to 3 days after exposure to become infected.

Although symptoms vary from person to person, most commonly a person infected with rotavirus begins with frequent vomiting -- sometimes as often as every 5-10 minutes, or every time she tries to eat or drink something (even water) -- and a fever (typically up to 102-103 F). Diarrhea begins about a day later, and can also be as often as every 5-10 minutes. The diarrhea stools are usually watery and can smell foul, but blood is usually not seen in rotavirus diarrhea. The vomiting usually subsides before the diarrhea; once the vomiting resolves, some patients can manage to drink enough fluids to keep themselves hydrated despite all the fluid they are losing in their stools. However, severe vomiting and diarrhea can dehydrate you to the point where you need IV fluids, and once a patient is on IV fluids I usually keep them on the IV until they are drinking well and can keep up with stool losses. During the "season" it's not uncommon to have many children hospitalized with dehydration; I recently admitted 8 children with rotavirus gastroenteritis and dehydration to the hospital in two days.

NOCARDIA Bacterial Infection:   Chronic bacterial infection that usually originates in the lungs and tends to spread to other organ systems -- most commonly the brain and the skin. It may also involve the kidneys, the joints, the heart, the eyes, and the bones.

Nocardia is found in soil around the world. It can be contracted by inhaling contaminated dust or via contamination of a wound with soil containing nocardia.  While individuals with normal immune systems can acquire this infection, the main risk factors for nocardiosis are a weakened immune system or chronic lung disease. People on chronic steroid therapy, those with cancer, organ or bone marrow transplants, ARE AT RISK!

This page will be updated as new information is available. It will also be updated when specific treatments are actually scheduled.