Published on February 13, 2020
- There are many factors to consider when making treatment decisions.
- In addition to choosing a treatment that has a high success rate for your specific diagnosis, many people also must consider what will allow them to continue working.
- The side effects of a specific therapy are something that many patients research when making a treatment plan.
Multiple myeloma patient advocates Cindy Chmielewski, Alan Stephenson and Mike Burns discuss treatment decisions and what important factors they consider; including long-term success rates, side effects and the ability to manage treatments with their individual careers. Watch to learn more about decision-making from the patient perspective.
This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc., Celgene Corporation Janssen Pharmaceuticals and Takeda Oncology for their support. These organizations have no editorial control. Patient Power is solely responsible for program content.
Transcript | Starting the Treatment Decision-Making Process: Things to Consider
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If we had to make a treatment decision in the future and you were given two options, what kind of information would you like to know about each of those options before you make that decision?
I knew early on—one of the considerations I thought of after my stem cell transplant didn’t work was, I was still working at the time, and I was a teacher. And being a teacher, it was hard to take off from school to go to an infusion center to get my treatment. Or if I had to go several times a week, that just was not something possible. And I was trying to continue to teach.
So, one of things that I was considering back then was how the treatment was given. And one of the treatments that I chose was an oral treatment because that allowed me to continue to be employed. Eventually, I did retire. And that wasn’t as much of a concern, but back then, when I was still working and knew that it would be a conflict, that was something that came into my decision-making process. Anybody else?
I would have to say for me the side effects probably would be the least important. I think I can probably endure a lot at this point in my life if it’s just temporary. I do have three businesses, and that would come into play as far as how treatments would go. My primary business as a financial advisor—I can pretty much do that from anywhere. In fact, even when I was going through my stem cell transplants, I always had my laptop with me. But since then, in the last year or year-and-a-half or so, I’ve started two more businesses, and that would definitely come into play.
And the other thing is I’d want to know what the track record is, you know? Do we have a long-term track record?
So, you’re saying side effects for you would be least. But track record—are you talking more about the efficacy of the drug, how well it works compared to other drugs? What do you mean by track record?
I would want to know—I would be more willing to trust something that had a long-term track record of success than something new that we really just don’t know that much about. And that conversation actually came up with my doctor, because there are a lot of new drugs out on the market right now. And he did tell me. He said, “Some of myeloma specialists are kind of getting away from the older drugs that we know work and going to these newer drugs.” He said, “I like to combine the two.” And that’s basically what he did. For my consolidation round, instead of doing a lower-dosed VDT-PACE of bortezomib (Velcade), dex (Decadron) and thalidomide (Thalomid) [cisplatin (Platinol), doxorubicin (Doxil), cyclophosphamide (Cytoxan) and etoposide (Etopophos or Toposar)] like they had historically done—for my consolidation round, they put me on the daratumumab (Darzalex). And I did 16 weeks of that, one treatment a week for eight weeks and every other week for eight weeks, and then I went on my own maintenance.
I think we’re getting close to the point where it’s going to be important to understand a lot about the molecular basis of your particular form of multiple myeloma in order to be able to personalize the treatment. So, what particular mutations are driving your or my myeloma at this particular point? Because we know that changes over time, and what drugs are most effective for those mutations ? I don’t know if we’re exactly at this point yet, but I think we’re getting close to that. So, when I relapse again, that’s something that I’m going to be talking with my doctor about—exactly what mutations have I got and what are the best drugs against those mutations?
I do agree with that, and I know the Myeloma Institute where I was treated they do genetic studies on every patient. I’m sure they do that in other facilities also. And I definitely agree that that’s where they’re trying to go. And hopefully, they’ll be there soon.