Now I really had my work cut out for me. While there didn't seem to be the need to make a decision immediately, there still was concern. Is it best to treat while you're still feeling relatively healthy, and likely, better able to handle the intensive treatment, or is it better to wait until symptoms appear?
What I discovered was, there is no simple answer. At least not one that everyone aggrees upon. Every doctor has his or her own idea as to what is the best course of action. Some doctors will tell you to wait and watch, others will want to try the less harmful monoclonal antibodies (sometimes combined with chemotherapy, and sometimes not), others will simply want to try high dose chemotherapy alone, and then others will want to go the transplant route.
What I discovered after reading many reports and talking, via email and in person, with doctors and researchers I believed to be the most knowledgeable on the subject, I discovered one common concensus 'aggressive disease - treat immediately, indolent disease - do nothing' (AKA wait and watch).
So now the next question becomes, how do you know if your leukemia or lymphoma is indolent or aggressive?
The answer - testing! Lots of testing. But that brings up even more questions. What tests? As it turns out there isn't one, or two or more standardized tests. Not all tests provide information pertinent to all leukemias and lymphomas, and the results, many times, can be interpreted differently for each lymphoma or leukemia designation?
This is where the US lags behind other nations in the world, including Canada, the UK, and even France. Because of our flawed health care system, these tests can be very expensive to run and many times require specialized knowledge to interpret. Since our health care system treats health care as a commodity rather then a social service, doctors (but not all) have a tendency to look at the bottom line rather then the patients well being. See my health care blog for more informatin on this subject.
So the result is either doctors don't know about such tests, because there isn't an incentive for them to research the information, or they simply won't prescribe them due to cost factors.
So what is patient to do? There isn't much a patient can do, except to do the research themselves and educate their doctors on the subject, and convince them of the necessity for the tests (remember I did say not all doctors always look to the bottom line), or pay lots of money to have those tests run, either in this country or travel overseas to have them performed.
I chose to make two trips to Europe, one to France and one to the UK. In general I have found doctors overseas are more knowledgeable, and forth coming with information then doctors in the US. While the trip to Europe were costly, those doctors charged very little or nothing to perform the tests.
My wife and I also combined the trips to take much needed vacations to two countries we had never been to before. The money spent was well worth it, in more ways then one.
What I discovered was, there is no simple answer. At least not one that everyone aggrees upon. Every doctor has his or her own idea as to what is the best course of action. Some doctors will tell you to wait and watch, others will want to try the less harmful monoclonal antibodies (sometimes combined with chemotherapy, and sometimes not), others will simply want to try high dose chemotherapy alone, and then others will want to go the transplant route.
What I discovered after reading many reports and talking, via email and in person, with doctors and researchers I believed to be the most knowledgeable on the subject, I discovered one common concensus 'aggressive disease - treat immediately, indolent disease - do nothing' (AKA wait and watch).
So now the next question becomes, how do you know if your leukemia or lymphoma is indolent or aggressive?
The answer - testing! Lots of testing. But that brings up even more questions. What tests? As it turns out there isn't one, or two or more standardized tests. Not all tests provide information pertinent to all leukemias and lymphomas, and the results, many times, can be interpreted differently for each lymphoma or leukemia designation?
This is where the US lags behind other nations in the world, including Canada, the UK, and even France. Because of our flawed health care system, these tests can be very expensive to run and many times require specialized knowledge to interpret. Since our health care system treats health care as a commodity rather then a social service, doctors (but not all) have a tendency to look at the bottom line rather then the patients well being. See my health care blog for more informatin on this subject.
So the result is either doctors don't know about such tests, because there isn't an incentive for them to research the information, or they simply won't prescribe them due to cost factors.
So what is patient to do? There isn't much a patient can do, except to do the research themselves and educate their doctors on the subject, and convince them of the necessity for the tests (remember I did say not all doctors always look to the bottom line), or pay lots of money to have those tests run, either in this country or travel overseas to have them performed.
I chose to make two trips to Europe, one to France and one to the UK. In general I have found doctors overseas are more knowledgeable, and forth coming with information then doctors in the US. While the trip to Europe were costly, those doctors charged very little or nothing to perform the tests.
My wife and I also combined the trips to take much needed vacations to two countries we had never been to before. The money spent was well worth it, in more ways then one.
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