I know I haven’t been posting anything related to myeloma lately…and that has been bothering me a lot. And so I’ve been trying really hard to concentrate.
I began writing this post about ten days ago, but I just haven’t been able to finish it.
So today I decided to write a different sort of post: a post about why I can’t write a post.
It reminds me of the time when I signed up for an American Sign Language course. I was fresh out of college, so that’s QUITE a few years ago…Anyway, I loved my ASL course and was an eager student. Our first assignment was to go shopping in a supermarket and “pretend” to be deaf. The idea was that it would be helpful if we understood how it feels be to be deaf in a “hearing” world…
Even though the assignment was interesting, and it made sense, I didn’t know what to do, to be honest. I only knew a few signs at that stage and couldn’t help thinking: what if I run into a deaf person? How can I explain that this is an ASL assignment?
In the end, I just couldn’t do it. And so I wrote a paper about how I felt at not having been able to carry out the teacher’s assignment. (For the record, I got an A+.)
So here goes. Another “non-paper.” A non-post on a post that I haven’t been able to complete (yet).
A recent Mayo Clinic study published in “Blood” deals with one of the hottest new issues in the smoldering myeloma field, namely: are some of us smolderers really at the early myeloma stage? Should some of us be considered for (conventional) treatment?
The abstract is available for free here: http://goo.gl/QY244V
As you can see, the abstract mentions the Spanish PETHEMA smoldering myeloma-chemotherapy study. Well, I’d like to direct your attention to the language used to describe the PETHEMA study: “A report from the PETHEMA-GEM group described both fewer myeloma related events and better overall survival among patients with high-risk SMM patients who were treated with lenalidomide and dexamethasone.”
OVERALL SURVIVAL. What is it? In clinical trials, it’s used to see how well a treatment works…Crudely put: how many patients survive, how many don’t…
But what about the patients’ QUALITY OF LIFE? There are only three mentions of “quality of life” in the Mayo study: the first is where the authors discuss the side effects registered during the PETHEMA trial. Not surprisingly, there were many more side effects in the treatment group than in the control one. The upshot is that 30% of the patients in the treatment group withdrew from the study due to toxicity or choice, compared to only 4.8% in the control group. 17 patients compared to just 3. The Mayo authors immediately add: “A potential impact in quality of life needs to be excluded.” And that is their first mention of quality of life. Uhm.
Now, I read the full PETHEMA study. And I can assure you that the PETHEMA authors state clearly that they didn’t look at the quality of life of their study participants, as though quality of life were irrelevant…
Have we reached the point where “overall survival” is more important than “quality of life”?
Well, today I’m going to leave it at that. It’s just too frustrating to read this stuff… Too upsetting. Words words words…blablabla.
I have another reason for setting aside this study for the time being: I’m going to have blood tests done on Tuesday, I don’t want to be upset by anything in the meantime. I want to be happy and calm…
But here’s my final consideration: a study that doesn’t address the quality of life of patients has no credibility whatsoever, in my opinion. And it shouldn’t be allowed. It shouldn’t be bloody allowed.
What do YOU think?