Notes from our 5/18/2007 appointment, at 12:30 pm
Dr. Delaney, one of the main oncologists here that will be watching Jovee closing during the high dose chemo and stem cell transplant, said that most kids that have reached this far suffer a loss of hearing, at least in some form. She was surprised that Jovee had not lost any, as results from the audiologist came in. Here are some further notes from Dr. Delaney:
Jovee has had a very good partial response (VGPR) to chemotherapy. There is one area that is questionable on her CT scan, but is inconclusive by MIBG. This is a good response. "She is where we'd like her to be for transplant."
The benefit of an autologous transplant is that the transplant has the best track record for cure. About 50% of patients achieve long term success. The risk is that about 5% of patients do not surve the toxicity of the transplant itself. About 50% do not achieve long term survival.
Jovee will get high dose chemotherapy in hopes that it will wipe away every vestige of the disease. She will then need her own stem cells to be infused so that she can make bone marrow.
She will get carboplatin, etoposide, and melphalan.
Possible side effects of chemotherapy include:
Low blood counts
Need for transfusions - (red cells and platelets)
Mucositis - (bad mouth sores. Jovee will receive pain medication as needed. Dr. Delaney suggests that Jovee gets used to the suction machine by plaing with it before she needs it.
Loss of Appetite - (Jovee will receive nutrition by TPN)
High risk of infection - (Jovee will receive prophylactic antibiotics, anti-viral, and anti-fungal medication
High fevers - (possibly reaching 104 degrees)
Veno-occlusive disease (VOD) - sometimes the liver reacts to the toxicity of the chemotherapy. Symptoms include janudice, weight gain from fluid retention and tenderness of the liver. We can't predict who will get VOD. Usually VOD is self-limiting and the body heals itself. Very rarely, VOD is sever and life threatening.
Lung problems, rarely
Blood pressure instability - (with the administration of etoposide)
Possible long term affects of chemotherapy:
Secondary malignancy - (etoposide carries a 1% risk of developing leukemia)
Infusion of stem cells - Jovee's cells are frozen in a preservative called DMSO. When DMSO thaws it is smelly. It is excreted through the lungs so Jovee's breath will smell. Rarely, a patient can have an allergic reaction to DMSO and blood pressure instability. The nurses will watch carefully for this.
Jovee is a fast healer. She was discharged 8 days after surgery when the expectations was that she'd be in PICU for many more days.
Jovee has a 90 on GFR, a kidney test that measures the way her kidneys function. This test tells us how her kidneys will clear the high dose chemotherapy of transplant. If she was less than 60 we would not proceed with transplant. Since she is between 60 and 100, we will modify the dose of chemo so that it is in the safe range for her.
Jovee will have a tough couple of weeks before her counts come in around Day 10 or 12. We expect her to be in the hospital for about a month after transplant. Ir oder to be discharged from teh hospital, Jovee will need to be engrafted, that is have her ANC about 500, be fever free, and tolerate a little G-tube feeds. Upon discharge she will be seen at the Seattle Cancer Care Alliance for follow up.
Then her care will be transferred back to Dr. Julie Park for radiation and CIS retinoic acid maintenance.