Stephanie - Interview 59

Age at interview: 18

Age at diagnosis: 15

Brief Outline: Wegener's granulomatosis is rare among young people and can affect many organs in the body, it can also be life threatening. Stephanie was invited to take part in a trial on improving the treatment of Wegener's granulomatosis and after discussing it with her mum, she agreed to take part.

Background: Stephanie aged 18, of mixed ethnic origin; Greek-English, is a student, and lives with her parents and sibling at home. At the age of 15 Stephanie was diagnosed with Wegener's granulomatosis that causes inflammation of the small and medium blood vessels.

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Stephanie aged 18, of mixed ethnic origin; Greek-English, is a student, and lives with her parents and sibling at home. At the age of 15 Stephanie was diagnosed with Wegener’s granulomatosis that causes inflammation of the small and medium blood vessels. Wegeners granulomatosis is rare among young people and can affect many organs in the body, it can also be life threatening.

Stephanie was very poorly in hospital when she was invited to take part in the trial. It was quite overwhelming at the time to take in all the information, but after discussing it with her mum she agreed to take part. She says she wanted to take part because the trial offered the chance to take a drug that had fewer side effects than the usual or standard treatment and could be taken at home as a tablet, unlike the usual treatment that involves regularly attending the hospital for treatment. Although she received plenty of information she felt she received lots of the wrong information. Stephanie wanted to know the ‘pure facts’ about the side effects she may experience, and did experience, as a result of taking the trial drug.

Stephanie feels that clinical trials in young people are important and says that young people are ‘perfect candidates’ because they are more likely to ‘bounce back’. She says taking part may encourage you to take part in future trials, because you have had the experience and understand what it is like. However, she says that it is important that young people asks questions especially if there is something that you don’t understand about a trial or the treatment.

 

Once Stephanie had made the decision to take part she just wanted to get on with the treatment and didn't want to discuss it anymore.

Did you say you discussed it with your mum at the hospital? Could you come home and discuss it?

 

I wasn’t allowed home at that point. I was there for a month and a half in [hospital] and I’d been at the hospital near me for like three weeks. So I’d been home only like three, two times. So I wasn’t, I wasn’t allowed to come home and like kind of fully discuss it. But we talked a lot in the hospital. And my mum was allowed to like take me out and we’d go kind of like to eat and talk it over. But I think once I’d kind of, I kind of agreed to it quite quickly, I was swayed very quickly, and then I was just like, “Yes” and I didn’t want to talk about it anymore. I tend to not talk about any of it at all. I kind of just get on with it and its part of my, my life and my day-to-day routine. And I think that’s how it is for most people with a long-term diseases is that, you know, if you relapse you relapse and it happens and there’s nothing you can do about it. So I mean if you dwell over it too much it does get quite tedious.

 

A trial may give you the chance to try a new treatment. Seeing how the health of a close family member had improved after taking part in a trial reassured Stephanie it was worth giving it a go.

What were the key reasons, do you think, you wanted to go and take part in the trial rather than have the standard?

 

Because I know from experience, like my mum has MS and she was on a trial for ages and ages and it really worked. And so sometimes it does seem safer going with the kind of more commonly used option. But it kind of, that also kind of made me think, “Well, they come out with new drugs all the time. And, you know, they’re not going to be offering it to me if it doesn’t do anything. It’s not like a placebo.”

 

I felt like, yes, I did feel like that if I could help someone and someone could have, you know, a much easier road to recovery because of something that I did, it made me feel a bit better about it and that my suffering, being sick was worth it for someone else.

 

It is helpful for Stephanie to think some good for others may come out of her own illness, and that better drugs may become available.

I felt like, yes, I did feel like that if I could help someone and someone could have, you know, a much easier road to recovery because of something that I did, it made me feel a bit better about it and that my suffering, being sick was worth it for someone else.

I don’t really know. Not particularly with clinical trials but, because I didn’t even, I didn’t even notice I was on a clinical trial, to be honest. It made no difference to me. Getting better is getting better, whatever you take. So, but I’m just happy that it could help other people maybe in the future and get a bit more funding for a drug that’s worked really well for me. So hopefully it will work well for other people and kind of reduce the suffering that some, some of the other drugs might produce. And if it can kind of ease the pain of an already painful situation, then that’s worth it for me.
 

Payment for taking part in the trial was not the first thing on Stephanie's mind, she wanted to get better. She would have been insulted to have been offered money.

It kind of, I don’t think it would have mattered to me at the time. Because you’re so sick and you don’t really think about anything like that. You just kind of want to be better and you’re in hospital and, you know, you, you’re so vulnerable there. You know, money just, things like money and anything that mattered to you when, when you were healthy just seem so insignificant. So I think, I don’t know, for some reason I feel like I would have been quite insulted at the thought that I needed some sort of payment to be better. Like I wouldn’t want to do that anyway. But, I don’t know, I could do with the money now.

 

Even though Stephanie experienced quite a few side effects from the trial drug, she was pleased to have taken part.

And how long did the side effects last?

 

The side effects lasted, well, I was, I was sick and nauseous [door] throughout the whole thing. But the kind of bruising and the cutting kind of went down after about maybe two months of eighteen months.

 

And are you pleased to have taken part?

 

Yes, I am. I feel like, I feel like I’ve had a much easier road to, a road to recovery than I could have had, done. And I think that even though the side effects were bad, they weren’t as bad as they could have been. I’m quite lucky that I’ve been, like it was just return to my life as I would have done. Maybe feeling a bit different but, you know, just being a normal kind of teenager and just getting on with it.

 

At the end of the trial Stephanie is adapting to a different medication, but she doesn't mind because she has stopped taking steroids which she is pleased about.

I mean how did you feel when it ended? What happened then?

 

I went on to, when the trial ended I went on to a different drug that was, I’m not really sure what it was for actually. But a lot of, like it’s, it’s kind of back to what most people take and kind of just adapting to that new drug and the side effects that that had.

 

Did that bother you that, because you were doing so well and then you’ve gone back to what the standard treatment is? How did you, you know, how did that…?

 

It didn’t, I didn’t really feel any different about it. Just, the trial was over and it just meant that if I ran out of pills that I didn’t have to go all the way to [area] just to get a prescription kind of thing. It was; that was easier. I could just go to my local pharmacy and just get them.

 

Has it ha-, has it made much difference to you? Because you said you were adapting to sort of the side effects of the…

 

No, because the side effects of the new drug, azathioprine, are just a lot less. Like I can go out in the sun, I can go on holiday and, and kind of be a bit less careful, but still careful. And by the time I was on the azathioprine my steroid dose has come, had come really far down as well. So the whole thing had kind of tapered off. So, you know, it was, everything was a bit more manageable. And, you know now I’m not on any steroids, and they are the only pills I take.

 

Do you still take the iron and the calcium?

 

I, the iron used to make me really really sick. So I don’t take that any more. I take calcium like once every three weeks.

 

Taking part in a clinical trial as a young person prepares you for future trials. However, Stephanie feels that it can be difficult for other people to understand what a clinical trial is.

And just thinking in terms of clinical trials in general, I mean do you think it’s important that they’re now doing a lot more clinical trials for young people?

 

I do because I think young people are like the perfect candidate for them, because you’re much more likely to bounce back anyway. And also that, I don’t know, you’re probably more likely to do a clinical trial again in the future if you’ve been on one that’s been a success. So it kind of, if you get sick again when you’re a bit older, it’s kind of prepping you for contributing to another clinical trial.

 

And do you, what, how would you explain to somebody, if you were explaining to another young person or to your friends what a clinical trial is, how would you describe it?

 

I didn’t, actually I didn’t tell them I was on a clinical trial. I just told them I was on the, the chemo. I just told them, because it’s as toxic as that, and I just don’t think they’d really understand it if it was the other thing. And so I just, I just said it was that. And, and my mum does as well. It’s like people, we just say that I’m on, I was on that. Because I think people are a lot more kind of aware of it, so they kind of understand it more. I think they treat it a bit more seriously. Because what used to get on my nerves is that because you look fine and you’re not in hospital any more, and people think you’re okay. So the moment that you say, you know, you’re on that, they kind of treat you a bit more seriously. And I kind of, I always liked the kind of serious quality they gave it because I think it made people take it more seriously. Because if someone just dismissed it I’d be, I’d get, I would get quite angry, because it wasn’t something that I could just dismiss and be like, “Oh, well, you’re better now.”

 

So it was like, so other peoples understanding?

 

Yes other peoples understanding. If they understood something a bit more, then I’d just let it be a bit simpler.

 

The doctors and nurses always answered any questions that Stephanie had about the trial. In fact sometimes she feels there can be too much information.

So you say when you were invited, it was a consultant at the hospital that invited you?

 

Yes.

 

And did they speak to your mum and you together?

 

They spoke, they spoke to us, kind of they just told us about it. But any concerns I had really, because I stayed, because we live quite close to [hospital], literally like 30 minutes away on the train, mum, I would, I would say to my mum, she never stayed overnight with me because I thought, “You’re obviously so upset and so stressed. Just go home, sleep and come back in the morning. Because there’s no point in you staying here because you’re driving me crazy.” So any information I got was usually, because I was the oldest on the ward by about ten years, the nurses, you know, if they were up on nightshift would talk to me and, you know, if I wanted to cry about anything, it was them that I could speak to. Because the nurses there are just amazing. So any concerns I had they really explained to me. And any concerns about side effects, they would find information for me. And it was those kind of Yes, so just when you stay up at night and things play on your mind; I just had someone to talk to about it. And it was, I found that really helpful.

 

So the nurses, they were all good?

 

Yes.

 

And did you have any information yourself at all? Or was it all for your mum?

 

There was a clinical trial nurse and she gave me loads of like leaflets and was really good at kind of checking up on me, and gave me lots of numbers to call if there was like anything wrong and lots of people I could talk to at the hospital and offered counsellors, and almost given too much. I was just like, “Whoa.” But literally it was just take the pill every day and let it do its thing and just kind of carry on. There’s not much else you can do really.

 

Stephanie didn't want to know about the biology of it all, she wanted to know more about the side effects and how they might affect her, including if the drug would affect her having children in the future.

Did you find there was too much information?

 

I think there was too much of the wrong information. It felt like, I wish I’d been told more about the side effects because that’s what you really care about. Like I don’t, I’m not going to understand the biology of it all and what exactly it’s doing. And so I don’t really, I don’t want to know about that. So I just take it and it does what it does. If it works it works, if it doesn’t it doesn’t. But it’s what is going to affect me every single day is what I want to know. Like they didn’t know a lot about fertility. They didn’t know a lot about hair loss. They didn’t know a lot about kind of brittle bones. They were like, “Take calcium. It might make you have really brittle bones.” And, you know, I think the thing is, is because it was a clinical trial they couldn’t give me a lot of definitive answers about the long term. Which is what I was worried about. Like, “If I lose my hair, is it going to grow back?” If, I mean I didn’t have a period for like a year and a half. I was like, “If they stop, are, are they going to come back? Am I going to be able to have kids in twenty, thirty years if I want to?” You know, “Is, one day is my, you know, thigh bone just going to crack and there’s nothing I can do about it because my bones are so brittle?” So I think that was s-, something I did get quite frustrated about is that, you know, they kind, they try and downplay anything that they think might deter you from taking it, just because they want you to take it and they want you to get better. But it’s the kind of things that I want to know because it will affect me. Like the cutting and the scarring and the bruising really easily, those are the things that are going to affect me every day. So those, those were the things that I would want to know, and they weren’t really shared with me. Just because, I think maybe they just didn’t know because no one had, you know, it was a clinical trial.

 

When you say they downplayed and they didn’t share it with you, what made you think that?

 

Because the side effects were like, you know, severe enough. Like if I got cut by my cat or something, it would take it two or three days to stop bleeding. And I would have thought that something like that I mean they would share with you. Because if it wasn’t just a cut by my cat, but I got hit by a car, you know, that’s something that maybe I should know. Maybe someone like a paramedic would want to know that kind of information. But I don’t, maybe it’s not downplaying, they just, maybe they just, they don’t know. So that was what I shared with them in the feedback, a lot of that.

 

Because little was known about the trial drug Stephanie looked on the internet. It was reassuring to find it had been used successfully in patients with other serious health conditions.

I mean did you ask questions at the time?

 

I did. But there weren’t that many questions that I had. They were all about the side effects and a lot of them they couldn’t really answer. And I had to just find out by myself in time.

 

And how did, you say you had to look it up and, and search on the Internet, what places did you look for and how did you find…?

 

Just, I just Googled it and I mean there wasn’t a, there was literally nothing on treating Wegener’s with it. There was a lot about kind of what it’s mainly used for, which is transplant patients and stopping them from rejecting organs, and they sometimes use it after big blood transfusions. Yes, so there wasn’t a lot of information about treating Wegener’s with it because it’s still in a clinical trial. But what I could find, you know, kind of reassured me that it was legit and I wasn’t just being given some random drug that no one had ever heard of.

 

So the drug had, was known sort of thing? What made you sort of feel a bit more assured on seeing the information?

 

Just that there was, there was a lot of information about it. And reading people who’d had like kidney transplants and everything, you know. It was much more, I don’t know, it just reassured me a bit that lots of people had good things to say about it and had a high success rate with it.

 

Knowing that other young people had taken part in the trial and being able to have the treatment at home rather than stay in hospital also influenced Stephanie's decision to take part in a trial.

So what was different about the trial?

 

Just that instead of going, you know, every couple of days like or staying at hospital even longer than I had been or going back every few days to have intravenous treatment, that I could take two pills twice a day at home. You know I could stay at home and have to be at hospital less. Which is, when you’ve been there for a couple of months is quite, quite tempting.

 

So that’s quite a big difference really, isn’t it? From having chemo and going in…

 

I think especially when you have chemo it’s really, you have to be a lot more careful. I mean even though it still has the same concept of kind of breaking down your immune system and building it back up from scratch, it’s, I think chemo, you’re much more susceptible to illnesses and viruses. And for a while you have to be in like a little containment, one of the rooms, those have got, they’ve got rooms at [hospital] which are for patients with like leukemia and HIV and things like that have, that are all very very clean and very well contained. And I had to stay in them one night. And I thought if I had to stay there for a bit longer I would be, go a bit crazy. It felt a bit like a prison cell.

 

So had the drug been trialed on, on other people before, or in your condition before?

 

They had a girl a few weeks before me who was, I think, a year younger than me, in my ward, who had been diagnosed with Wegener’s. And she went on the trial as well and she was having in a couple of weeks quite good success. Because, they, and they told me about it because it’s such an uncommon disease and the fact that two girls around the same age within a couple of weeks were both diagnosed was quite uncommon for them. So she went on the trial and she was she was doing quite well. So that kind of swayed me.

 

Knowing how other people had done in the trial would be interesting to Stephanie, but she feels sometimes researchers are a bit 'secretive' about what they say. Knowing how well she has done is a positive result in itself.

You didn’t receive anything?

 

I didn’t expect to though because, I don’t know, I know that a lot of things are quite secretive. I, you know, I learnt all about it. I did psychology as, as an A level. So a lot of, I know a lot of studies are kind of, you participate and then that’s about it. That’s all they want from you. They’re not going to share the information with you.

 

I just wondered if they, I mean would you like to know at all. Do you think it’s important?

 

I’d like to, I think, I’d be interested if other people kind of turned out the same as me and did well, and if they didn’t do well, kind of what went wrong. Just because I’m nosey. I just think I’m interested in kind of what happened to other people that are the same as me. But apart from that, I’m not that bothered by not knowing. I think that my case in itself is a success. So whether everyone else did well or not is, you know, it’s sad if they didn’t. But I, I contributed to the cause and I did very well. So that’s all I can say really.

 

Stephanie feels that health professionals need to be clear about all known side effects and not be afraid to tell young people.

Is there anything that would have made it better for you or anything that you would have liked to have had that you didn’t have?

 

I think I just would have liked to have had just like facts, pure facts about the side effects, like, “This will happen.” Because I think it just, it came as a surprise when, you know, I wasn’t able to go running or to go to do this or to do what I would normally do. And I think I just needed to be kind of told straight, like, “You can’t go to school and you can’t be socialising with people that are really sick because you’re going to get sick and you’re going to be worse. And if you cut yourself it’s not going to, you’re not going to heal as quickly as you did.” And I think those are the things that I wish I’d known. Rather than taking a month and knowing not being as careful, and being really scared when I got cut and I wouldn’t stop bleeding, and waking up in the middle of the night and have blood and be like, “Where is this coming from?” and realise like it was something that I got two days ago still bleeding. I think those were, those were the things that I wish I’d known, because I would have been much less kind of worried at the time, thinking there was something else wrong. Because I never w-, I never ever worried about things before. But when I got sick, everything was like a sign that I was getting worse. And it did terrify me. So I think if I’d been given like just f-, hard facts about kind of the side effects, so that I wouldn’t have been worried when they did happen, I would have felt a bit better.

 

Yes. I think because I was younger they didn’t want to kind of upset me. But, you know, like 15 and 16, you know, I think you can take it.

 

If there is anything that you do not understand Stephanie suggests that you should always ask the doctors and nurses to explain in simpler terms.

In terms of the terms like clinical trial, were there any terms that they used that you didn’t understand?

 

Not really. The fact that I can’t pronounce the name of the drug maybe. But that’s not really their fault. No, there wasn’t really like, there are times that you do feel a bit like way out of your depth. But it’s usually when doctor's kind of talk among themselves in front of you about you, and you just feel a bit kind of weird. You feel like you’re not really in the room. It is a bit strange. But there was never kind of a conversation I was meant to be part of that I didn’t understand. And if, you know, if there wasn’t something, if there was something I didn’t understand, I’d just be like, “I don’t know what that is. You’ll have to explain it in normal people terms, not doctor terms.”

 

So you would, you would ask?

 

Yes.