That is a sucky situation regarding insurance.....wow, we can't discuss politics here so I won't talk about my opinion on your healthcare system.... I will say that you could look into compassionate access for your dad. I know that the makers of temozolomide have a compassionate use program and will supply the drug for free to people who do not have insurance....i do not know if they do the same for the under insured. Also, look into clinical trials as a clinical trial will provide free drugs and monitoring for your dad. You need to look into trials sooner, rather than later though because a lot of trials have inegibility criteria and some prior treatment etc may make the patient ineligible.....they also generally like patients who are not too far gone when they enter the trial. Also, keep in mind that it's a trial......a blind trial, which means your dad may not get the trialled drug. If he doesn't get the drug he will get the current gold standard of treatment..... Another possible line if treatment could be cyberknife or gamma knife....which is a form of surgery where they use high targeted radiation (like a laser) to debulk the tumours. It's more effective on small tumours, so it's often ideal for the smaller lesions you get with brain mets (as opposed to the larger mass you usually see with primary brain cancer. Again, I don't know about insurance issues, but in Australia we can access it through our healthcare system, which means the government pays for it as it's a legitimate treatment.....so, insurance should cover it. Finally, take this one step at a time. You guys are fighting brain mets....that is a huge deal, you just can't afford to worry about anything that may or may not happen. Look into compassionate programs, seek out patient care programs. Look in to hospice care, tap into any resource that you can. Much love to you guys xxxx
I'm so sorry to hear about your dad's issues. I can relate to the financial burden that these medical disasters put on families. My wife's grandfather had Alzheimer's and had to be put into a nursing home. Medicare doesn't cover everything, and when he passed, they went after the estate for what was owed. The family went into the house shortly before he passed, took everything of value, either monetary or sentimental, and left the state to claim the house. Not to get political, but I think everyone can agree that when it comes to how the state handles end-of-life issues, we have a pretty fucked up system. As for your father, I will second the sentiment to make sure you spend as much time with him now as you can. My father died of a brain tumor back in 1991 (I can't believe it has been that long!). He was a fighter and ended up beating the odds, living for nearly 2 years after his doctors told him he had 3-6 months. The worst part, though were the last 6 months of his life, when he started loosing his mental capacity. My dad "died" before his body actually shut down. The last memory I have of him was going to visit him in the nursing home (by that point he had little to no motor control). My mom took me in to his room, and, in a slurred voice, he asked her, "Who is this?" Mom had to explain to him that, "This is your son, Ed.", but I don't think it registered with him. For me, that was when he died, not when his heart finally stopped beating several weeks later. I was fortunate, though, that my dad made an effort to spend more time with us kids while he was still relatively healthy. I'll always remember those trips to the playground near my aunt's house where he was staying during his chemo/radiation (growing up in rural KS, the nearest treatment hospital was 90 miles away). At the time, I was more interested in playing with my cousin (I was only 12 at the time), but those moments have came to mean more for me as the years have passed. I wish you and your family the best of luck, but be prepared for some hard times ahead. My thoughts are with you.
Thanks for the kind words. You're message strikes home a bit more then most for a couple of reasons. First off, before we went into the hospital, we feared it was Alzheimers or some other thing that was slowly going to be deteriorating his brain. But now we find out it is Cancer that may do this in weeks or months instead of years to come. So I can not tell you how afraid I am of exactly what you wrote here. Worst part is my name is Ed as well.
