Options?.... talk to your insurance company.

I left off the last post with where we were at in December and trying to decide what our options were to treat the mutation of the CML cells.  There are not many.  This mutation is rare, and most of the targeted chemo drugs on the market do not address or affect the enzyme in this mutation.  There is one drug that is on the market for a few years.  This drug has some serious side effects.  We have been told in 15-20% of patients taking this drug, there have been cardiac, bleeding, and liver issues.

The second option for treatment is Bone marrow transplant.  This could be a potential cure, but also comes with its own complications.  This is also only a 60% success rate according to some well known websites (success rate can be considered cure, as well as survival).  Our doctors assure us that CML is the easiest cancer to treat with a bone marrow transplant and although they have not discussed cure rates with us, lead us to believe that success is higher with CML than other cancers.

So we have been headed down the path of transplant.  Honestly, we are on the path that the doctors send us without really knowing where we are going and/or if it is the right path.  We are trying to do our research and look into options.  The one major issue with dealing with a major health problem is that the amount of control you have over decisions is much smaller than you realize.....for many many reasons.

Of course, we are at the mercy of the doctors we see.  A transplant doctor knows transplants.  He (we have only seen male doctors at this point) might not have as much knowledge about other treatments or medications available.  And we have no idea if the doctor we are visiting is any good.  The medical community is very protective of its doctors.  It is hard to figure out what makes a good doctor and if the doctor we are seeing is one of those good doctors.

One major reason is insurance.  As we start down this path, we are told to check out MD Anderson.  Of course.  They are a major cancer research and treatment center.... one of the best in the nation.  But our insurance doesn't cover MD Anderson.   None of the insurance that we can get cover it.  MD Anderson only accepts insurance policies offered by employers, and we purchase our own insurance plans.  Insurance and cost limit us drastically to the doctors we see, the medical centers we can look into.  Some might argue that his health is worth any price.  But is it?  It is a question no one likes to answer, but in a situation like this, it needs to be addressed somewhat.  We have three girls at different ages, including college.  This affects them and their future as well.  Do we want to completely bankrupt our family and put us into debt for this?  If we knew that by doing so, we would cure the cancer and save my husbands life, maybe.  But we don't.  We have no idea if going to a renowned cancer center gives us any advantage.  There are no guarantees in any of this.  So we walk around all the landlines, we take the path that has been laid out for us, and we hope that by keeping our eyes and hearts open we make the correct decisions.