Table 4 In-depth interview participant quotes on experience with treatment changes

Has not made a treatment change

I’ve been to blood cancer conferences and people talk about taking a medication holiday, where you’re coming off the medicine for a period of time, and the doctors say, yeah, you can take a holiday from the medicine as long as your numbers are good and everything. And I’m like, you know what, I’m not touching it. I’m gonna take the maintenance and just keep taking it until – I’m afraid to even take that medication holiday because I’m just like, maybe if I stop taking it for a while, then the multiple myeloma is just gonna come back. It’s just gonna rear its ugly head so I’d rather – to take that pill, it really doesn’t affect me that much to take a pill. I don’t have a problem swallowing pills. So, as long as the doctor told me to do it, I trust him. I’ve seen good results. I’m still here. So, I’m not gonna mess with anything. —Black female, age 55, diagnosed in 2015

Actively discussing prospective treatment change

Well, we are discussing it now because my numbers are starting to move upward. So we’ve been discussing when, you know, at what level we would wait to change and then what we would change to. So we have been discussing that, but because it’s so well tolerated up until now and working, we haven’t had any reason – to me, I felt no reason in discussing changing treatment. But now we are because we know my numbers are increasing, and eventually I’m going to have to. So, we like to look down the road. —White female, age 57, diagnosed in 2011

Has made a treatment change

Treatment stopped working

When the treatment doesn’t work is when I have to – they change it, but the oncologist knows damn well it’s not working, so they’d better change to try something else. There’s no cure for this damn disease, but there are treatments, and there’s new treatments coming up all the time, so, thank God I can move to a different treatment when the current one stops working. …So, the current treatment, where we’ve reduced the dosage and reduced the frequency from weekly to biweekly – so far, knock wood, that has been working, and I’m hoping it’s gonna continue working. …You keep on moving to other treatments until you run out of options, and then, thank God the FDA’s approving drugs in the meantime to give a go. —White male, age 69, diagnosed in 2012

Treatment change due to side effects

If [side effects are] too dominating in my life, I just stop the meds for a while and I tell my doctor. …Once, I asked to stop for a year and they said no. …That was rather dramatic. They said six months, and we proceeded to do that, and after three months, my marker doubled, and I went back on the meds. After three months of being off them, yeah. I don’t want to be stupid about this. So I went right back on. …I usually just ask to stop. I’m not a fan of switching meds when the ones that I’m taking are doing what I want, but I’m a fan of stopping them to let my body recover and then keep going with the same ones. It’s kind of a practical choice rather than starting something new. —Female, no race specified, age 74, diagnosed in 2003

I think the protocol when she first started me on it is just 25 mg, so that’s what we went on, and it was kind of a newer medicine, so we just went with 25. And then after some clean PET scans over a couple of years we reduced it to 15, and it was causing some stomach problems, and then at 15, it was fine. And then after probably two more PET scans that were good, she's like, let's try 10. But then we upped it back to 15 last year, just because there’s a couple of things from the PET scan that are very minor, but she just wants to make sure. So we're back at 15 now. …Actually, I think it was my suggestion. Only initially, from 25 to 15, was because I was having stomach problems, and she was like, okay, well, here’s what we can try. So it was actually me initiating it, because of the side effects. And then when we went to 10, I was kind of initiating it, too, and she agreed. And then going back to 15 was kind of her suggestion last year. —White female, age 52, diagnosed in 2005

Change in mode of administration

I mentioned initially, my first treatment was two oral drugs and a subcutaneous injection. The subcutaneous injection, I used to get rashes at the site of the injection and that subcutaneous was twice a week. It was not particularly painful but it actually became difficult for them to find sites to inject with my going back in there so frequently. So, there was an oral version of this drug that works the same way as the subcutaneous one, and so I asked him can we switch to this one. If it’s oral, I’m not going to get an injection site reaction, it’s more convenient for me because I’m not going to the clinic for a sub-cu shot, and so we did. We actually switched from the subcutaneous to the oral drug that works by the same mechanism. —White male, age 62, diagnosed in 2014