Table 3 Example patient expressions

Fatigue and/or tiredness

(05-02-M-74) … all of the sudden I started getting more lethargic and, and more tired, more fatigued.

(01-05-F-55) I felt that I was very tired all the time.

(01-04-M-50) … when I was first diagnosed I’d get really fatigued during the day. Come home, take a three-four hour nap and, uh, never felt any different. Still fatigued …

(01-14-F-67) I was just tired.… But every day around three o’clock I laid down and went to bed and I couldn’t sit up very long.… my body just felt very uncomfortable.

Shortness of breath

(01-02-M-73) I can’t, sometimes, ah, I feel like I can’t even catch my breath. It’s, it’s getting worse. It’s not getting better at all.…

N/A

Pain below the ribs on the left side and/or stomach pain and/or abdominal pain

(03-09-F-29) I used to have a lot of spleen pain before I was on treatment.… … it’s upper left … right under where my boob is … all the way to the left. Like on the side.

(01-17-M-70) … it is definitely on the, uh, left side of the ribcage.… It’s continual.… But it’s not chronic in that the only time I’d really know I have it is if I press on it or I tighten my belt too tight. It’s not that it’s a throbbing continual pain.

(01-17-M-70) … it is definitely on the, uh, left side of the ribcage.… It’s continual.… But it’s not chronic in that the only time I’d really know I have it is if I press on it or I tighten my belt too tight. It’s not that it’s a throbbing continual pain.

Enlarged spleen

(03-01-M-66) A: Uh, yes.… The spleen pain was very – I knew when that

pain – I call it abdominal pain because my spleen was so big. It was bigger than a football and, and it went from one side of my body to the other. So whenever it hurt it would hurt in my entire abdomen area, but it was … definitely caused by the spleen. I, I could tell.

(01-16-F-59) I have, uh, an enlarged spleen, which I can feel.… Well I don’t feel it here when I’m sitting up, but when I lie down

(01-01-F-58) I felt that my spleen might be enlarged, but of course I’m not sure. I couldn’t – I don’t know … So when the spleen becomes enlarged sometimes it feels uncomfortable or you get some sort of pain down there

Uncomfortable abdomen and/or abdominal discomfort and/or bloating and/or feeling full

(05-01-F-69) Back in December of 2007 … I had been experiencing since the previous October a lot of pain on my left side … feeling very full all the time, very, very kind of bloated and uncomfortable.

(01-04-M-50-P) I get an almost a nausea feeling from it. Uh, and other than that it means you feel full.

Full quickly and/or filling up quickly and/or eating less

(05-01-F-69) … feeling very full all the time …

03-09-F-29) I had been noticing, up to that point, I’d been eating less.…I was having a really hard time eating … regular sized meals …

(01-04-M-50-P) I do have that too.… the feeling of fullness is I would eat – like right now I would eat maybe a quarter of the portion I’m normally used to eating and it just – I can’t eat no more. I’m just full.

Night sweats and/or general sweats

(05-03-M-79) I was having terrible night sweats.… They were very, very bad sweats.… It’s almost like I was waddling on water and as soon as I went to bed, they started. And then they’d go on all night.… Every night.

(01-01-F-58-P) Well I wake up and I just feel like a flush of warmth like, um, kind of like hot flashes

(01-14-F-67) …I just can sometimes just sit there and have company and have 10 napkins besides me and just keep, um, just keep trying to wipe away the sweat.

Bone pain

(03-07-F-64) I would get a lot of long bone pain … particularly when I was lying on my couch.… I’ve only had it in my legs. I’ve never had it substantially in my arms, but … I still will get that in my legs.

(01-01-F-58) I have bone pain.…

(01-01-F-58) … every time I lie down it hurts for a little while. Um, when I get up it hurts for a little while and if I am say driving for a long time it hurts.

Muscle pain and/or muscle cramps

(03-09-F-29) … within the first year a few more symptoms kind of started showing up, like … more bone pain, joint pain and muscle pain.

N/A

Itching

(01-02-M-73-P) ...it was the worse thing you ever want to see. I mean, I was slapping myself, it was so bad.… I didn’t want to scratch it because I was leaving … red blotches, so I was slapping myself.

(01-01-F-58) I had no rash, nothing coming up on my body, but just a very severe itching, particularly after showers.

(01-01-F-58) … in 2013, last year, uh, I had been feeling very severe itching,

Dizziness

(01-05-F-55) … a little dizzy.

(01-04-M-50) … weight loss and dizziness.… Uh, it’s like, uh, getting on like one of them kids’ toys and getting spun around and then standing up and you just – it’s – sometimes it’s difficult to stand up. Usually I got to lean up against something for about 10 s for it to go away.

Bruise easily

05-01-F-69) Well very easily bruising of course because of the lower platelet count.… if I get a cut or, you know, something like that it bleeds for quite a while.… I always, you know, of course have the bruising if I bump into anything.…

N/A

Balance

(01-09-F-73) The balance is when I get up and I tend to sometimes go to my left and hopefully there’s something there to grab on to. I’m actually considering a cane that – I feel I’m at that point where I should have something to … rely on.… You know, and I’ve learned to get up slowly and …

N/A

Brain fog

(03-09-F-29) It wasn’t that bad around the time that I was first diagnosed, then even … the first year or so … I didn’t really have it that bad. And I don’t know how much of it is because of the disease or it’s the Jakafi.… I don’t know which one … causes that. Or if it’s just the lack of sleep that I get.… Or … the fatigue …

N/A

Frequent urination

(01-09-F-73) It’s just … I have to go to the bathroom and when I have to go I better move quickly. Yeah … and it’s more so now because my bladder is being squished more … which I hate. I wear … the little panty liners when I came when I’m home. If I go out I wear a very thick one. And I’ve been looking at … those stupid diapers for adults, which I’m not looking forward to but … just to be on the safe side. ‘Cause if I have to go it’s going. It’s not gonna stop.

N/A

Hot flashes

(05-01-F-69) I’ve had somewhat of the … night sweats.… I think the only thing I experience at night has more to do with hot flashes than actual night sweats.

N/A

Muscle weakness

(01-09-F-73) … the legs not wanting to function.… And muscle weakness. I have no muscle whatsoever in my body.… Just no strength.

N/A

Peripheral neuropathy and/or numbness

(05-01-F-69) I do have some … peripheral neuropathy in my … lower legs … in my shin area and my feet.

N/A

Weight loss

(05-03-M-79) I went to my family doctor because I had lost a lot of weight.… I could barely stand up.… I found out the reason was that my blood count was so low … Of course I lost so much weight, I lost about 40 pounds in a month

(01-11-M-69) I just remember that I just started losing weight for no, no apparent reason.… I was losing weight and I didn’t really need to.

Appetite loss

N/A

(01-01-F-58) I used to eat, uh, more food in, in a meal and I used to have more meals and now I, I often, uh, skip a meal often and, uh, I, uh, I don’t have the appetite, uh, that I used to have.

Cold

N/A

(01-03-M-59) I notice I get a cold every year, uh, but I don’t know if that’s just [State] in general, you know. When I came back – I never got a cold when I was in [Country]. I got the flu, but not a cold every year.

Joint pain

(03-09-F-29) I would say within the first year a few more symptoms … started showing up, like … joint pain …

(01-11-M-69) I usually experience some type of joint pain.…

Rashes

N/A

(01-03-M-59) So, uh, besides that I get rashes.

Achiness

(05-05-M-85) I was hurting, aching. … they took me to the doctor to find out why I was weak and lightheaded – and aching.…

N/A

Back pain

(01-02-M-73) In my back. I have severe back pains since all this has come out, too … I’ve always had back pain but not, nothing like this here.… it would come and go but this one here has come and it stays. It doesn’t leave me. It’s constant.

N/A

Burning sensation

(05-01-F-69) … felt like you had kind of hot blood running through your … body, especially through your upper torso to where it was a burning sensation.…

N/A

Fevers and/or chills

(04-03-M-73) Once in a while when I have to go to bed early I need a couple Tylenols I get a fever or a chill, variable between those two extremes. That’s not very common … maybe once every two weeks or so, when I overexert.

N/A

Gout

(05-04-F-76) … it came on with the myelofibrosis … at one point they started me on the RUX2, and then they said, oh, we forgot to give you the gout medicine, so.… Then they gave me one, and that didn’t hold it, so they gave me a second one. So I was taking it twice a day. I’m only taking it once a day now.…

N/A

Hand pain

(03-07-F-64) It’s only in my hands. The first time it happened was before I was diagnosed with myelofibrosis … I was in my kitchen up north, walking across the room and got intense pain in the joint, the inner joint, the palm side of one finger, intense, 10. And I looked at it, and it was purple, like I called it a splinter hemorrhage which it’s not correct. It was like a star.… it was like a very specific black and blue point …

N/A

Headaches

(01-09-F-73) Terrible headaches.

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Inflammation in arm

(01-09-F-73) It was a lot of fluid in my elbow and it’s, it’s come down here and I’m not quite sure what’s going on there.… it’s very red and sore.… It’s swollen …

N/A

Nausea

(05-04-F-76-P) I just don’t want to eat. It, it makes me feel sick to my stomach.… Makes me feel like I might vomit.

(05-04-F-76-P) Oh, lots.… every time I pull the food out.… And start – and start eating it. Usually I can get a couple bites before it hits.

N/A