Supplemental File 4. Patient Quotes
Theme Newly Diagnosed Multiple Myeloma (NDMM) Relapsed-Refractory Multiple Myeloma (RRMM)
MM Symptoms
“I literally was screaming in pain, I was on my own in the house at the time and my family were really worried about me but I was literally, I couldn’t walk, I was almost paralyzed, this came on so suddenly.” TE NDMM, UK
“Fatigue. I was very, very tired. Sometimes, I sit in my armchair for 5–10 minutes and have a short nap, and then I feel better. But I am always very tired, all day long. I can no longer work around the house as I used to, do what I used to do – it’s fatigue, physical, and I can no longer do much.”
TIE NDMM, France
“…what I am most concerned about is the pain; I can’t stand the pain.”
TE NDMM, France
“It feels as if there are ants running over my hands and feet, and under my arms. You can take cold baths and that sort of thing, but the feeling doesn't disappear... It particularly bothers you at night when you wake up
“The top three symptoms, is the bone pain in the upper back because I’ve got this, I’ve been set into this kyphosis position and as I’ve shrunk 5 ½ inches as well I lost in height, my sort of rib cage is down onto my you know … it’s all shrunk down you know, and my back so the bone pain would be top I would say and the uncomfortableness of it as well.” RRMM, UK
“I found the restless leg and arm piece really hard because it made me really tired because I wasn’t sleeping and then that affected my quality of life. So probably say that but of course when I’m really ill, that affected my ability to look after my children so that’s almost worse.” RRMM, UK
“Since my disease was diagnosed late, I was experiencing terrible pain. I had difficulty getting up from a lying down position, and that’s about it. What bothered me the most at first was the pain… And because of the late treatment, my spine has been much damaged and I have lost 10 cm in height. This is a terrible pain that I experienced in the bones.” RRMM, France
“I'm currently struggling with the lack of drive, so that basically everything I do I have to force myself to do. I mean if I don't get going in the morning, or in the
and can't sleep properly. During the daytime, it takes away your desire to do things.” TIE NDMM, Germany
“The ‘fatigue?’ Well, even when I think I've slept well, and then when I get up in the morning, I notice that I'm ‘still feeling exhausted’ and I could continue sleeping. I ‘force myself to stay awake’ and to have as much of the day as possible.” Germany, TIE, NDMM
afternoon, I probably won't do anything until the evening. So I have to motivate myself bright and early in the morning... There are some days where I can’t manage anything. And then I simply have to let things go.” RRMM, Germany
“I still have ‘fatigue syndrome,’ by which I mean a ‘lack of drive,’ and I have a hard time getting going.” Germany, RRMM
Impacts of MM
“I’ve had to stop working, I have had to have more help around the house, more help with childcare, I have had to pause my university studies, my post grad studies.” TE NDMM, UK
“It affects me greatly because it’s stopping me walking you know, distances and stopping me driving long distances, I can only drive a short area down the road for example so local shop, that’s all I can drive at the moment so it’s… I can’t lift heavy things in the house so I ask for help.”
TE NDMM, UK
“I don’t do any physical activities anymore. I work a bit; I take care of children that I pick up after school, cook them lunch and bring them back.
It’s somehow a way of having some sort of physical activity as it’s a 10- min walk and I do this 4 times a day. But this summer, I didn’t go out much. I did last year, in the evening but not this year. I don’t have enough energy for that.” TIE NDMM, France
“Yes, I frequently have to stand people up. It's not that great. It happens quite frequently that I have to cancel something on short notice. I simply can't do it because I'm feeling too sick.” TIE NDMM, Germany
“If you compare it to what I was doing before I was diagnosed, there’s quite a difference. If you just put that to one side and look at the sort of daily tasks you know, I set my daily tasks these days to take account of the bone pain, fatigue so I will take things a bit easy and within that framework, I accomplish most of the things I want to do most days.” RRMM, UK
“In the early days when I was sort of new out of treatment or on treatment it prevented me going out as much because I’d be tired or I wouldn’t feel well or the taste in your mouth means you don’t want to sort of eat or drink so that … you stop looking forward to going out so much because you knew you wouldn’t enjoy it.” RRMM, UK
“Vertigo, and this is also very difficult to handle because it’s a daily occurrence.
The pills and injections prevent us from having the life we would like to have in terms of moving about – because we’re always scared that we might fall. And then, there’s also mucosal dryness.” RRMM, France
“There have been cases where I have had to cancel a meeting with someone.
Simply because I didn't want to force myself to go. You bring sort of a bad mood with you. You know? Because you yourself aren’t feeling so well. Not in such a good mood. And then you say, No, don’t get mad, but today I really don't feel like
it. My good friends know this and they accept it. But otherwise it's a little bit difficult.” RRMM, Germany
Treatment Benefits
“I’ve got a young child I want 20, 30, 40 years, you know the longer I can get in remission the better, regardless of whether I’m on treatment or not, whether I’m on maintenance or not, I’ll do whatever I need to, to keep myself alive.” TE NDMM, UK
“I don’t know, that’s really hard to say because like day to day I’d say reducing the fatigue, but actually it’s more important to suppress the disease as soon as possible. So I’d probably say that, I probably think it’s probably better to deal with the fatigue and suppress the disease quicker.” TE NDMM, UK
“I think we’ve just said it; it’s pain relief. I’m not bothered by the disease;
I know of it and its implications, but what I am most bothered about is the pain. That’s the worst part. And I know a bit about the disease now, and I believe the days to come should be a bit more difficult and I am therefore a bit apprehensive of the future.” TE NDMM, France
“They talk about two to five years. They say you can get that when you do the therapy. But the question for me is whether you can tolerate the stuff and whether the quality of life matches it, so that you aren’t feeling worse because of the side effects of the therapy.” TIE NDMM, Germany
“Yes, I think the… I mean if we didn’t have the bone pains then the bone pain would be great if that wasn’t there. But I could kind of live with that if I could extend my life a bit if you know what I mean, that’s the kind of way I see it. I mean I’d live with my arm pain, I’d live with the neuropathy… I think I’d actually put up with all that just to extend and live like this and have a bit more time in my life.” RRMM, UK
“I literally don’t have a life at the moment, I really don’t, I can’t even go to the… I can’t walk around the supermarket, I can’t you know, I can’t do… I haven’t done anything for two years, it’s because my mobility … but yes, to have some kind of independence and social life at the end and be able to do stuff, I mean I just can’t do anything, I can’t… you know.” RRMM, UK
“Again, an effective treatment should make this terrible bone pain go away, or at least reduce it. It could reduce it initially and reduce it altogether then. It’s quite extraordinary when you no longer feel pain. Then you can start living a different life.” RRMM, France
“Well, for example, when I take dexamethasone – which I sometimes take. And then my bone pain pretty much disappears. And then I can do things without hindrance.
So that's certainly an improvement.” RRMM, Germany
“I'm also glad that I am burdening other people less. For example, when it comes to meals, I can prepare them by myself. I can do my own laundry.
That's all very important to me.” TE NDMM, Germany
Side Effects
“I think the peripheral neuropathy is a really big worry… you can be left with permanent damage and that then effectively you have it in your feet, you can’t walk in the same way or you can’t exercise, you can’t move around or you can’t… you’re limited in what you can do with your fingers and you’re then sort of in a position where you’ve got constant pain,” TE NDMM, UK
“Yes well... I check my temperature and I am careful of what I eat and I don’t go out much to avoid meeting people who may have germs or bacteria. I live in a very closed circle for now and I was told to be careful for the next month.” TE NDMM, France
“The greatest concern is perhaps the nausea, actually… that hinders me because food doesn't taste good anymore, and so you eat less. And then you feel even weaker. It's important to maintain your weight and not to continue losing weight. You have to consider your overall condition so that you can go through all this and be physically capable of withstanding this elaborate chemotherapy.” TIE NDMM, Germany
“During the period when I had the nausea, I had the feeling I wasn't living, I was simply existing and waiting.” TE NDMM, Germany
“It’s slow thinking or not being able to remember. I’ll be halfway through a conversation, somebody will say something to me and I’ll have forgotten what I was talking about. I can forget words, I know what the word is and I can feel the word in my head, I just can’t get it out. So, it’s really quite bad and that’s why they haven’t let me go back to work.” RRMM, UK
“I had nausea and vomiting in the early days after my transplant and I think just before it as well so yes, that’s not a nice part of it, if it’s short term I think it’s manageable, I think when it lasts for a long time, that’s really difficult.” RRMM, UK
“Regarding treatment-related symptoms, the most bothersome and that have the biggest impact on the daily life is diarrhea because we’re stuck inside the house and there are restrictions to go wherever we want because we’re always scared that… Well, you know. Even with medications to control it.” RRMM, France
“What bothers me the most is the neuropathy, the polyneuropathy. I've got it in my hands and my lower arms. It manifests itself in the way my hands are frequently numb. And it can happen in both hands, so I end up without feeling anything
“For the past four months, I've been undergoing chemotherapy. That means that many symptoms have been caused by side effects from medications. They cannot be solely traced to the illness, or it's difficult to distinguish them. During certain phases, depending on what medications I'm taking, I have an increase in muscle cramps. I've got polyneuropathy with a variety of symptoms.” TE NDMM, Germany
there. Also while I'm eating. For example, I frequently have to set down the silverware because I simply can't hold it anymore.” RRMM, Germany
Treatment Burden
“Being able to have treatments that don’t involve you necessarily having to go into hospital all the time for them, would be a real benefit, the amount of time I spend travelling to and from hospital and the amount of days I then spend at hospital and the amount of time it then takes in the hospital has a real impact.” TE NDMM, UK
“The only drawback of an SC administration was that I had to go to the hospital for the injections, and I live 35 km away from the hospital I went to initially – I live in the countryside. It’s just one constraint amongst others, but I don’t have any specific preferences. Triple therapy for me was an injection and drugs to take at home, so… But the main constraint was the trip to the hospital.” TE NDMM, France
“I’ve been on maintenance therapy for sort of 7 years and being able to do that via a tablet rather than having to go into hospital impacts my quality of life
massively. So I would definitely choose tablets over anything else because I know my quality of life is going to deteriorate once I start this new treatment because I’ll be in twice a week so... ” RRMM, UK
“My preference would be having the medication at home simply because it is easier to manage and it has less impact on you know, the day to day routine and activity. So that would be a strong, a strong preference. I think that in practice, in my experience the GP surgery isn’t an option at the moment so it’s either home or hospital which for me, is it’s an hour’s drive each way. So, I… it’s a pretty strong preference for home.” RRMM, UK
“For me, it's very important [location] because it means independence.”
TIE NDMM, Germany
“We had a discussion about that. And it turned out that it could take four or five or six hours. And above all, I don't have the best veins. And if they are all riddled with holes, that would be a problem. At an earlier
hospitalization I was jabbed all over the place, and I had bruises everywhere.” TIE NDMM, Germany
“It’s a bit burdensome in the long term as it’s supposed to be twice a week, and it requires going to the hospital twice a week, so it feels like we’re living with HCPs on a daily basis. It’s a bit burdensome.” RRMM, France
“I would want to have the treatment performed at the oncologist’s or at the clinic. I think that's better than at home. Because if something happens, you immediately have the right contact partners.” RRMM, Germany
Vignettes
“What side effects would be rather than just saying whether they were medium and life-threatening or what… which of those side effects would be life-threatening.” TIE NDMM, UK
“The problem is not the treatment itself, but more the modalities – the ambulatory visits, the injections – but there is nothing specific about the treatment in itself, from what I’m seeing on the screen.” TE NDMM, France
“I would want more information yes, because and that would be following a treatment schedule for one or two years, typically the injection will take less than 2 hours.” RRMM, UK
“I mean now for me personally, I’d want to know particularly about diabetes because of my experience and initial treatment. I’d want to know about thrombosis, DVTs, you know, what information there was on that.” RRMM, UK
“The issue is that further information is something we ask for over the course of the treatment we take. In my case, that’s how it goes. You are given a treatment,
“Let me put it like this. This is really very brief. And there's really no information in there at all, except that there would be 20 appointments.
But when it comes to the side effects, and what exactly is to be expected, that's not in there. Perhaps that will come in the next part? I don't know.”
TE NDMM, Germany
you take it, and then, adverse events start occurring and questions arise – how long it will last, what will I be able to do, etc. It comes over time. I never ask too many questions at first when I start taking a treatment.” RRMM, France
“Side effects are usually caused by chemotherapy, I know that. But there are many ways to suppress the side effects. I would appreciate it if they would describe what you can do to get these side effects under control.” RRMM, Germany
DVT deep vein thrombosis, GP general practitioner, HCP health care provider, SC subcutaneous, TE transplant eligible, TIE transplant ineligible, UK United Kingdom
