For those of you who knew Miette was going through chemotherapy but didn’t know much beyond that, here is the pediatric chemotherapy treatment plan laid out by Seattle Childrens Hospital. This is the Standard of Care that is used across the entire United States for pediatric Ewings Sarcoma. There is not a single health care facility that would deviate from this treatment plan (trust us, we called and called and called all over the country looking for even just one place). Long story short, we had no choice in the matter… unless we wanted to flee the country. Yes, that was a option we seriously considered.
Here are some of my own notes of looking up the treatment plan. This is the stuff that the plan didn’t tell us. This is the stuff that the doctors didn’t tell us. They know it, but they didn’t even get near this information with a 10 foot pole. I can see why. This is not all my notes and research by any means. I plan to post the letter we developed for our reasons explaining our decision to remove Miette from her treatment early which has more research.
1.5mg/m2 – single dose every 4 weeks
Not FDA approved for children except for Wilm’s tumor and leukemias
Several instances of coma has been reported in pediatric patients
37.5mg/m2 once per day for 2 days – given every 4 weeks (375 mg/m2 cumulative dose). Congestive Heart Failure (CHF) occurs in 20% of patients over the 500 mg/m2 cumulative dose. The higher the dose after 400 mg/m2, the sharper the rise in CHF. Miette received 375 mg/m2. At this point, she falls in the 3-5% range of having heart failure which could occur immediately or it could be delayed by years. While 3-5% doesn’t seem like much, attach that percentage to your child and fully understand that heart failure means death (or a heart transplant and be forever on immune suppressing anti-rejection drugs… and then more than likely have to have another transplant later on). This wasn’t explained to us at all. There is a reason this drug is nicknamed the Red Death.
1200mg/m2 – 1 hour infusion on first day – given every 4 weeks
Not FDA approved for children expect for malignant lymphomas, leukemias, retinoblastoma, and adenocarcinoma.
100mg/m2 – given over 1hr every 20 hrs, 5 times.
Not FDA approved for children at all. Only approved for adults for small cell lung cancer and testicular cancer. This study shows a repetitive high-dose use of etoposide poses a higher risk of therapy induced AML after treatment with doxorubicin and etoposide in pediatric solid tumors. Interesting. We weren’t told that either.
Ifosfamide 1800mg/m2 – given over 1hr every 20 hrs, 5 times.
Encephalopathy is also a well-known side effect and it develops in approximately 10-30% of patients exposed to it. Common symptoms of encephalopathy include confusion, disorientation, somnolence, hallucinations, psychosis, diplopia, asterixis, dysarthria, muscle spasticity,extrapyramidal symptoms, seizures and coma. (http://www.jpma.org.pk/full_article_text.php?article_id=2344).
While all of those side effects are still better than death from cancer, we were not given this list. This really comes into play when deciding how much ifosfamide a body needs to be exposed to. At some point the drug becomes ineffective either through the cancer being gone or the cancer not responding any longer to ifosfamide. This also plays a big part if your child is receiving these drugs because maybe the doctors don’t know what else to try. Your child might end up being treated with this drug for treatment that doesn’t have to do with cancer. So then you have to weigh the side effects against the health issue… it’s kind of hard to do if you don’t know ALL the side effects and the chances of those side effects. The doctors will not get detailed with the side effects. They just will not.
One might notice that 3 of the 5 drugs are not FDA approved for Miette or for the cancer she had (that’s called “off label” use). I only mention this because of the huge amount of negative press and bashing of natural “quack” treatments because they aren’t FDA approved and are considered “unsafe”. Really.
Calling that hypocritical is being nice.