Pat's Place: Beware Of "Myeloma Speak"
“You have multiple myeloma.” I would guess you didn't even know what multiple myeloma was when you heard those fateful words some time ago.
But chances are, if you are reading this column, you moved past that uninformed point some time ago.
As a newly diagnosed patient, you go from knowing nothing about your cancer to being an expert in a matter of months. Continue along the learning curve I just described, and your understanding may exponentially expand to the point where you begin to understand and even use “myeloma speak.”
The symptoms start with speaking in abbreviations: dex for dexamethasone or Rev/Vel/dex for Revlimid, Velcade, and dexamethasone. This rapidly progresses to using acronyms: Rev/Vel/dex becomes RVD. A stem cell transplant becomes SCT. The International Myeloma Foundation is now the IMF. The Leukemia & Lymphoma Society the LLS. You get the idea.
Now don't get me wrong. There is nothing wrong with this—actually, it is commendable.
The problem becomes when you start using so much “myeloma speak” that people can't follow what you're saying. Symptoms of this include glazed over eyes and rapidly shifting feet, followed by a quick exit by the ones who were formerly listening to you.
And it can get worse! Like most diseases, “myeloma speak” may become so serious that soon even other multiple myeloma patients and caregivers have trouble understanding what you are saying.
Although I try to write in an easy to understand and not-too-technical writing style, I fall into this category of using “myeloma speak” sometimes. Let me give you a recent example.
Last week I was speaking with my oncology nurse by phone, preparing for my regularly scheduled three month visit. I was asking her a number of questions about two new, experimental medications that are likely to receive FDA approval and become available within the next year.
I will follow my own advice and spare you the specific details. The bottom line—she had no idea what I was talking about!
I was surprised and a bit annoyed. How could an oncology nurse at a highly respected cancer center specializing in multiple myeloma not understand my questions?
I quickly backed-off, realizing that a nurse is dealing with the present—not drugs which may or may not be available sometime in the future.
When talking with others who might not know as much about myeloma, take the time to slow down and provide some background information if you think you need to. Use the simplest—not most complicated—possible way to explain your situation.
When communicating by letter or email, always remember to spell out the phrase you are tempted to abbreviate the first time you use it.
This becomes especially important when you are speaking with your doctor, only in reverse. Ask him or her to fully explain each medication, test, procedure and possible side-effects. If you don't know what an M-spike is, ask! Why is it important? What should you be watching for, and why?
Keeping the experience and background of your listener in mind is always important, but especially so when talking about an emotionally charged topic like cancer. Good teachers realize and practice this. Heck, most of us do—unless we are stricken with the serious and progressive disease we now know as “myeloma speak.”
Feel good and keep smiling! Pat
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I try not to get frustrated about the obscurity of the disease, but......I recently went to a dermatologist. The nurse (?) entered the exam room and and looked over the questionaire I filled out and said, "so, I see where you've had skin cancer before." "What?" I said. "It says here you've had melanoma". "No I haven't", I say. She's says, "well, under previous cancer you put "melanoma". "No I didn't", I say, "I wrote down multiple myeloma". "OH, WHAT'S THAT?" is her reply. I briefly said, "...a type of blood cancer". End of discussion. This gets really old sometimes, especially when it comes from a health care professional. I know, this is an oppportunity to educate, but it gets really frustrating. Also, I know there are THOUSANDS of other types of cancer that few people are aware of, which makes it even sadder. OK, I'm done with my rant!
Really, Lynda? Pretty sad. You don't live in Florida, do you? I've found the "awareness/education bar isn't set very high down here- Pat
Well with it being 1% of ALL cancers, I basically don't expect the person I'm talking to, in or out of the healthcare profession to know anything about MM!
And if I don't feel like educating them about it, I don't. I just run it through quickly, blood cancer, blah, blah, blah.
No biggie. We're living with it, they are not. Good for them!
I expect an oncology nurse, working with a myeloma doc to know. That said, you are so right not to let little things like this get you down. How does the expression go "Don't sweat the little stuff..."
Thanks for reading! Pat
Although it is 1% of all cancers, for white women, it is the 12th most common cause of cancer death, and 7th most common for African American women, per L&LS. I'm actually grateful to STILL be frustrated in dealing with this for OVER FIVE YEARS; much better than the alternative!!!
Good point--not that this is a debate or their are any right or wrong answers.
I believe there are more cases of myeloma diagnosed in the U.S. each year than any single type of leukemia.
Lucky us! Pat
All good points and I like your style Lynda, that's funny!
If she was a Research Nurse, I would expect her to be aware. But just a regular onc nurse, doing infusions and such, nope. As a LR Devotee, of course, they have research nurses. And they were the folks, along with the PA's or APN's that we could have these conversations with. They had weekly meetings there for the oncology nurses to bring them up to speed on the latest breakthroughs they were working on. But I don't think that's the norm, do you?
I guess I just make the basic assumption that few have heard of it or are keeping up with it, unless they are involved in the research end of it. It just is so fluid, changing everyday, and thank god.
And of course the LR nurses are not necessarily up to date on research breakthroughs outside of UAMS. But they do go to the Myeloma conferences to come up to speed on other research center's breakthroughs.
All these nurses/techs/docs need to do is read The Myeloma Beacon two or three times a week to stay up-to-date! Pat
Are they Myeloma Healthcare folks, exclusively? Why don't you ask them and get their perspective. Do a story on it Pat. I could get you in touch with a couple of nurses in Little Rock just to have a contrast of how they do it and why. What are the differences either in perspective or nurse type. We could work on it together if you like. Might be interesting.
Many onc doctors are not up to date on MM and I would hope they would, as healthcare professionals get the actual research papers or go to conferences and paper presentations, and not just read reports and blogs about research breakthroughs. Its great for us as patients and family members, but certainly not for healthcare providers who are specializing in treating this disease.
It just hasn't been my experience to expect them to "know" or "understand" what I know. Its much more personal for Dave and I than it is them. They get their doctors orders and administer them. They aren't treating us, they aren't pondering what the doctor is doing. They catch mistakes, hopefully, they are often over worked and they go home, feed their kids, help them with homework and maybe take care of their own loved one who is elderly or ill. They don't eat, sleep, live, breathe, Multiple Myeloma.
I guess I have the advantage of two experiences. When in Little Rock, this is quite different. When home at the local infusion center, is more what you have experienced. I walk in there KNOWING I know WAY MORE than they do, and they don't like me very much, and I don't really care. Just do their job. They like Dave a lot! haha So I just steer clear of the place unless I have to get involved, so Dave has a more pleasant experience.
Hi Lori-
You make a good point about how our RN's don't "eat, sleep, live, breathe, Multiple Myeloma" like we do. I'm OK with all of this.
Lynda was describing a session with a nurse in another specialty... But shouldn't she have at least heard of multiple myeloma? Guess I would like to drop all of this if you don't mind. Too easy to make generalizations—of which I am already guilty! Pat