Most of you probably know that I have been working on several new books about multiple myeloma.?
My third book, New Myeloma Therapies from a Patient?s Perspective, will be published and available by the end of this month.? Researching this book reminded me about how difficult it can be to understand ?myeloma research speak.?? It wouldn?t be as tough if researchers were consistent in how they phrased and labeled things.? But often?well let?s just say they don?t do us ?novices? any favors!
?Let me start by sharing the example of thalidomide and Revlimid.
The trade name for thalidomide is Thalomid. The trade name for lenalidomide is Revlimid. For some reason, you will rarely see Thalomid used in myeloma related writing, either formal or informal.
Instead, thalidomide is almost always used.
Yet Revlimid is just the opposite. True, a research study will most likely use lenalidomide. But many oncologists and medical writers use Revlimid.? Revlimid is certainly the name used in doctors offices and at myeloma support groups. Even clinical studies refer to the oft used combination of lenalidomide, bortezomib and dexamethasone as RVD, short for Revlimid, Velcade and dexamethasone, not lenalidomide, bortezomib and Decadron.?
See!? And what about Decadron.? Almost never used.? Dexamethasone is.? Here?s a better example.? Ever heard of pamidronate disodium?? How about zoledronic acid?? No?? If I would have written Aredia instead of pamidronate disodium,, bet a few of our more experienced myeloma patients know what that is.? And if I used Zometa instead of zoledronic acid, most of you would recognize that name, right?? Right!?
For the record, both pamidronate disodium (trade name, Aredia) and zoledronic acid (trade name, Zometa) are bisphosphonates, designed to help strengthen and repair bone damage that can be caused by runaway myeloma cell growth in our bone marrow?
This can all be a bit confusing.? ?But like a lot of things in the medical field, custom often trumps efficiency and common sense.? I think the explanation for a lack of consistency here is simple:? Researchers and myeloma experts aren?t always the best writers?and even if they were they often don?t take the time to focus on using correct grammar, punctuation and sentence structure when writing their research papers. They interchange names based on the names they use when speaking to colleagues.?
To be fair, researchers have more important things to think about?like curing our multiple myeloma!?
Still, it can make it difficult to follow along when a trade name is most often used in your doctor?s office or by bloggers like me.? I do find that most patients use trade names (Revlimid, Zometa, Velcade, Cytoxan) most of the time?with dexamethasone (Decadron) and thalidomide (Thalomid) being the most common exceptions.? But king of the exceptions has got to be melphalan.? I didn?t know it?s trade name is Alkeran, did you?? Heck, I?ve never even heard of Alkeran!
See!? Even we do it.? And don?t even get me started on acronyms!? Do we really need so many ways to describe an autologous stem cell transplant?? Auto SCT, SCT, ASCT, BMT???
No wonder newly diagnosed patients and caregivers have trouble following along!? I hope that you have already guessed that today?s column is a bit ?tongue and cheek.?? In the grand scheme of things, not really much here that needs fixing.?
But next time you see a ?newbie?s? eyes glazing over, you might have some insight into why.? All of this technical stuff is hard enough to follow without interchanging two (or more!) names for the same thing.
Have a great week, everyone!? And if you find yourself getting frustrated by all of this, try and remember to feel good and keep smiling!? Pat
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