My name is Adrienne and I am a 4yr survivor of high-risk ALL. I am currently working for a pediatric cancer advocacy organization Kids v Cancer, currently hoping to push through a bill called the Creating Hope Act of 2011, which provides market incentives for drug companies to develop new drugs for rare pediatric diseases (which includes ALL pediatric cancers!!).
We are trying to discuss two things when we meet with people about this legislation: 1) that there are not enough drugs to adequately treat any kind of pediatric cancer, despite the common misconception that pediatric cancers have been cured, and 2) the drugs that are available are not good enough- they leave many of the children that are lucky enough to survive with devastating late effects that continue to follow them for the rest of their lives.
The late effects vary by disease, length of treatment, protocol used, etc. As Low/Standard Risk ALL is considered the "most curable" of the pediatric cancers, can anyone tell me what late effects low/standard risk kids experience? As high-risk I have a number of issues that I will deal with for the rest of my life, but we are attempting to show that even the "best possible scenario" is still not good enough. Of course, there are a ton of immediate side effects to chemotherapy, but we are only looking for late effects or long term problems at this point.
Thank you so much for your help!! We are very confident about the Creating Hope Act, and we believe it truly has a shot at being passed!! It could mean a lot of changes for the pediatric cancer community, and we would greatly appreciate any information you can provide!!
FYI- this message will be cross-posted as I am trying to reach out to as many ALL survivors or their caregivers as possible!! Thanks again!