“Somewhere, something incredible is waiting to be known.” – Carl Sagan
Wow! How things have changed for us dealing with Myeloma. For newly diagnosed patients, while we, who have been before you, are sorry for what you are facing now, we are really happy and sometimes envious of all the bloggers, The Myeloma Beacon, great websites, and now a new research tool that you have available to you in your time of distress and need for information.
There is a new website called Maven Semantic
(Hat tip, Pat Killingsworth, Living with Multiple Myeloma)
They are touting themselves as the largest healthcare database in the world. So visit their website, type in Multiple Myeloma and sort through all the facilities, physician bios, research facilities and begin your journey into finding the best place and medical team to address your disease.
Unless you are in serious medical compromise, such as kidney failure. Your local doctor should begin you on an oral chemo regimen which hopefully will begin to dent the MM, while working to manage your pain. If you are in this situation, take a deep breath, you have time to sort through information for your next action… what treatment choice you will make and who you will ask to work with you on that path. Don’t go to similar facilities for consultation, apples to apples is of no use to you. Go to consultations where the doctors have widely differing approaches to the treatment of Myeloma. It will help you sort out your goals, your plan. There is managing the disease with novel therapy drugs. There is Stem Cell Transplant (SCT). There is one SCT frontline therapy (with a 2nd transplant if it reoccurs or you don’t get into complete remission) and two SCTs (tandem) frontline therapy. There are alternative therapies (especially if you are a smolderer). The option to do nothing (unless a smoldering MM) is universally not advised. There are more options if you relapse or don’t have good results from the above choices, but 80% are low-risk MM presentations and respond to the above protocols before having to move onto even more invasive options.
My advice to you is, that while its “nice” to treat close to home, and sometimes it seems like a complete necessity, it is not always the best choice. Don’t be clouded by the big name facilities and their overall reputation. Look for the researchers. The ones who live and breathe Multiple Myeloma exclusively. The “treating physicians” are only reading their papers anyway, which is old before they even see it. Go to the guys who are scraping the petri dishes. I don’t mean to dismiss treating physicians, but in the case of a disease classed as rare and orphan, you simply should not be going to anyone who isn’t completely focused on this disease and they are few, but growing.
Really try to be open to the opportunities you have to finding the right team who can meet your goals, once you sort out what they are. And remember my mantra…
“Just state the WHAT and the HOW will work itself out.”
