Tuesday, November 3, 2009

Clinic Visit

Sammy went to the clinic for his check up today. He also had his mask made for the radiation treatment. He had to let them put hot plastic over his face so they could mold it to his features. It will be used to pin him down for the actual radiation. Good news...they will use the least amount possible so effects should be minimal. Here are the questions I had typed up for the doctors. The outline of the answers Brian was given are in bold.

Questions – Samuel Zweig November 3, 2009

1. MRD – are the results back? Yes, he has traces of leukemia but it is not a sign of anything for T-Call ALL. Nothing to worry about…he is in full remission.
2. Blood counts including ANC? Excellent – not neutropenic.

3. Can Sam eat at restaurant and eat cake on Friday? Yes.
4. School: When do kids generally begin to go back? He can go back in January and even December if we are comfortable.
5. Can my mother come to visit? See list of ailments attached: Yes.
6. Are we doing radiation? Why is he in need if no cells found initially in spinal fluid? Must be done to prevent relapse in this type of leukemia.
7. Testicles….another place ALL comes back so are they being targeted? Sterile outcome? Too young to become sterile…he will be checked periodically.
8. Should we expect lethargy and no eating again? No way to say when but may intermittently…expect it. Also radiation has late effects (lethargy).
9. PEG Asparaginase or E.coli Asparaginase? Can he have EMLA cream on leg for intramuscular option if selected for that? Sam was randomized for the E.coli Asparaginase ….20 weeks of large needles into his leg muscle…can’t wait! EMLA cream won’t really help!!!!
10. One of these meds caused the pain in his back, legs, chest and stomach…hard to identify which one…any advice to help him though it? It may or may not happen again, no way to predict but it becomes less likely.
11. Dexamethasone - potential side effects are endless and:

"Now that we have demonstrated that dexamethasone is so disruptive of sleep and causes profound fatigue in children with ALL, we will study ways to reduce these troublesome side effects, while still allowing the patients to get full benefit of the treatment," said Ching-Hon Pui, M.D., chair of the St. Jude Department of Oncology and the paper's senior author. "This would help us continue to improve the already high quality of care we provide to children with ALL."
This study was with large doses…lots of children do well on it (hope Sam is one of them)!

12. Is Dexrazoxane being given to reduce the heart problems that some survivors develop years after being treated with doxorubicin? ( as per the Dana Farber Study)
“The use of Doxorubicin in children with ALL makes it a highly curable disease, but because the chemotherapy kills heart muscle cells as a side effect, survivors can experience an improperly beating left ventricle, congestive heart failure, or arrhythmias that can cause sudden death. One study estimated that, even 25 years after they were treated, their risk of dying from heart disease is more than eight times normal.”

Lowest dose of Docorubicin will be given which has not proved to cause problems. The problem is Sam’s roadmap does not include the Dexrazoxane so I need to chase that up.

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