Chanelle - Interview 05

Age at interview: 28

Age at diagnosis: 20

Brief Outline: Chanelle was diagnosed with chronic myeloid leukaemia after a blood vessel burst in her eye. She was treated with monoclonal antibodies interferon then Glivec. She is in remission but is considering stopping the Glivec in order to become pregnant.

Background: Chanelle is a project manager. She lives with her partner and has no children. Ethnic background: White British.

More about me...

Chanelle was home from university for the holidays and had just started wearing contact lenses when she noticed a blind spot in her vision. The optician said she had not damaged her eye but that a blood vessel had burst in the back of it and she should go immediately to Accident & Emergency. Her eye was examined at the hospital and a blood test taken, which showed that her blood was unusually thick and sticky. She was told she had leukaemia and that she needed a bone marrow biopsy to be taken immediately. The following day she was sent to another hospital to have some of her white blood cells removed and when she got home her parents gave her some information leaflets, which is when she learned that leukaemia was a type of cancer.

 

Initially the only treatment she had was a drug to reduce her white cell blood count. She decided that regardless of what further treatment she was going to have she wanted to return to university, which was a long way from her parental home. She was started on injections of interferon alpha (a monoclonal antibody), which would lengthen her life while a bone marrow donor was sought so she could have a potentially life-saving transplant. However, no suitable donor was identified and her doctors initially said they didn’t know what else they could do for her. During this time she found it difficult to sustain some of her previous friendships at university because her priorities had changed and some young people didn’t know how to react to her.

 

After a few months her consultant invited her to take part in a trial that was comparing a new monoclonal antibody treatment in tablet form called Glivec (imatinib) with the interferon that she was already taking. She agreed but was disappointed to be randomly allocated the interferon. After a while she developed an intolerance to the interferon and was delighted to be switched to Glivec, after which she began to feel better. The down side of Glivec was, however, that she wouldn’t be able to conceive a child while she was taking it, which was not something she was immediately planning but nevertheless was a concern for the future.

 

After a while she was told she was in remission and eight years later continues to take Glivec daily. She and her partner are now wanting to start a family for which she will have to come off the treatment and it is not known whether she will be able to sustain her remission once off the Glivec.

Chanelle hadn't known that leukaemia was a type of cancer and was shocked when she discovered...

But I remember very clearly when I came home that night my mother said to me, ‘There’re some pamphlets for you on the kitchen table. Maybe we could read them together.’ And I went to go and pick up the pamphlets and they said. ‘Living with Cancer.’ Now I still don’t understand how this escaped my attention but at the time I thought, ‘Oh I don’t have cancer. I have leukaemia.’ And then my parents had to explain to me, ‘No this is what leukaemia is. It’s cancer.’

 

And it was almost like having a shock all over again, and that’s when I realised that actually I’m an adult and I have to face up to the fact that this has happened to me and I’m going to have to, you know, do this and this is happening. And despite all the medical procedures over the first two days it was that moment that said to me, ‘It’s time to step up to the plate and deal with this and find out what’s going on.’

Aged 28 and with a partner, Chanelle wants to start a family but would have to stop taking...

Obviously the only persisting issue for me now is starting a family, because that’s something that my partner and I are talking about now. And there are different options open to us and everything. But at the moment that feels like that’s the next hurdle really because I would have to come off my Glivec for a period of time, but that obviously, about ten, eleven months really, which you might be able to sustain your remission on it theoretically, but not enough is known about the drugs to know if that would be the case for everybody, although it has been done.

 

So that option is there but obviously it’s a difficult decision to make because I mean it’s not just do you take a risk with your own life? It’s is it irresponsible to start a family if you can’t guarantee that you’re going to be around for the next ten years, twenty years? But then at the end of the day I think well it’s probably, that this drug at the moment is working and there are other drugs out there. And at some point perhaps you just have to take these risks because nobody’s future is certain really, is it? But it is a risk I feel that that is really a big, big decision that I’m faced with and it’s becoming more and more of an issue as the months go by really. And it is something that I do have to make a decision about within the next couple of years and I am actually feeling the pressure of that at the moment. But I just think I’m going to wait for about six months and just see how I feel on that issue really.

Chanelle had a blood vessel burst in her eye: the optician sent her to A&E where a blood test...

Okay I was diagnosed with chronic myelogenous leukaemia when I was 20 years old. At the time I was attending university and I had come home for the summer holidays. And whilst I was at home I had kind of a lot of the classic symptoms which, you know, at the time I think everyone pegged down to student lifestyle so it had kind of escaped everyone’s attention.

 

But I’d lost a lot of weight and just didn’t have a very large appetite and was quite pale and with bruising quite easily and, you know, things like this. But it wasn’t really ringing any alarm bells. And then I had decided to try contact lenses and was really struggling with them and realised that there was a blind spot in my vision. And my mother said to me, ‘You must have scratched your eye when you were putting in a contact lens.’ So I went to the optician. He said to me, ‘You haven’t scratched your lens, a blood vessel has burst in the back of your eye and this is really unusual. So I want you to, not even go home, go straight to accident and emergency and find out what has happened because I think that this could potentially be something quite serious.’

 

So I went to the hospital and had lots of eye checks and things and they said, ‘We’ll take a blood test. Come back tomorrow.’ So my parents took me back to hospital the next day and I remember in the car thinking to myself, ‘Oh I hope I don’t have anything like diabetes.’ And then saying to myself, ‘Don’t be silly. It won’t be anything that serious.’

 

And we got to hospital and that was when I was told that the reason the blood vessel had burst in the back of my eye was because my blood was very thick and sticky. And the reason for that was because there were so many white cells in my blood, which meant that I was suffering from leukaemia, which it was very difficult to hear. And I’m usually quite a composed person and what have you, but being so young as well and, it was both difficult for me to accept.

Chanelle takes one imatinib tablet every evening with a meal; taking imatinib is much easier than...

Can you tell me a bit more about the Glivec - how that’s administered and how often you have it?

 

Yes.

 

When you were having it originally and whether it’s different now.

 

Yeah. When I first started. Glivec is in tablet form and when I was first taking it, it was four tablets, which made up four hundred milligrams. And now I take a single 400 milligram tablet. And that’s taken once a day in the evening after my evening meal. And that’s just all you need to do really.

 

Right. So every day of your life.

 

Yes, every day. Yeah.

 

And how do you feel about having to do that?

 

I don’t actually think it’s too onerous really, it’s kind of just something that’s so automatic to me now. And I think compared to having to inject yourself and what have you. I mean I guess it’s all relative, I suppose if I’d started taking tablets every day then I would have thought this is more of a pain really because I’ve got to remember to take it. But it’s such an easy option for me compared to what I started on that it doesn’t actually bother me. It doesn’t bother me and I just don’t forget it. It’s just second nature.

 

I think so many people take medication for different things, bits and pieces they have to do everyday anyway, that it really doesn’t bother me at all. No, I don’t find that a problem.

 

So what is the likelihood of it coming back?

 

It’s very difficult to say because not enough is known about the drug that I’m taking. I think that there is always a real possibility that the drugs that I’m taking will stop working, that you will develop an intolerance and then the drugs will stop being effective. And that’s something that I have to keep in mind because, as I said, it’s such a young treatment. It’s been around under ten years.

 

So the follow up on it is not massive and that’s something I do have to keep in mind. But what I try to keep in mind is whilst there is the possibility that this is not a forever drug there is also a very good possibility that it is a forever drug. And it used to be something that I worried about a lot but now I’m happy to be among the group of people that are proving that this will work or it won’t work. I mean whilst it doesn’t work for different people, for those it does work for there is that possibility that it could be a lifetime’s control. But I mean I do try and keep that in mind that there might come a day when I have to seek other options.

Chanelle found self-injection hard at first and got advice from a diabetic friend on how to avoid...

So the interferon you had before that you had to inject yourself. Was that once a day again?

 

Yes it was, yes. Once a day three times a week. But you only do it once on the day that you were doing it. But it’s just very strange to have to do something like that to yourself. And that obviously was a lot more hassle because they had to be kept in the refrigerator, and if you were going on holiday it was kind of a big deal to get it through baggage control because you have lots of needles with you and things, and keep a sharps box too. I mean that I did feel really impacted on my life a lot. And it just wasn’t something that I wanted to be doing, but taking a tablet I just find it very, very liberating actually, definitely.

 

So whereabouts did you have to inject the interferon?

 

In fatty areas of your body, so your stomach or your upper thighs would always be the best ones to go with. But again because I wasn’t very fatty at the time because I’d lost so much weight you’d often bruise yourself, and it’s quite unpleasant really.

 

Did you vary the site or always stick to the same one?

 

No I would vary the site because I was finding it painful, which always makes you then worry that you’re going to have that, you just kind of work yourself up. By about three o’clock I was starting to work myself up that it was going to hurt when I did it and then I was going to have these terrible side-effects a couple of hours later. So the whole thing really just, it was not a pleasant experience at all.

 

And how did you learn to do that injecting in the first place? Was it traumatic the first time you did it?

 

It was traumatic. It was kind of the, it actually, it was just, it was, I hate staying in hospital overnight and that was kind of what pushed me to learn it because the nurse said to me, ‘Come in today and we’ll practise but if you can’t do it on yourself today you’re going to have to stay in hospital until you can do it on yourself.’

 

So I was very much kind of there holding the needle thinking, ‘It’s now or never. You’ve just got to.’ And I probably really hurt myself because I kind of dug a dagger plunged it into myself because I was determined I wasn’t staying overnight. But I actually have a friend who is a diabetic and that turned out to be the way that I learned to do it properly without hurting myself, because if I’d asked the nurse at the hospital and confessed to having a problem then they would have helped me. But at the time I wasn’t in that place I was very kind of determined that I was going to cope with this and didn’t really want to show weakness.

 

So when I got home my friend who is diabetic was showing me ways to do it better and not bruise yourself. And you kind of treat yourself a bit more gently with it. Because obviously I think possibly you have to know what it’s like in order to talk somebody through it really. Yeah so it did take me a little while to get the knack of it really.

After her CML* diagnosis Chanelle was sent to a specialist hospital to have some of her excess...

And then they said, ‘Well tomorrow you’re going to have to go to another hospital, it’s a larger hospital, to have a leukapheresis, which is basically to harvest off all these extra white cells because treatment alone isn’t going to reduce it because there’s so many white cells.’

 

So the next day we went to the larger hospital and I really thought, I think what my coping mechanism was is this is all going to be a mistake, but you just kind of go through it in a bit of a dream and you’ve just got to try and cope with it, try to cope with what’s in front of you. So we went to the larger hospital, I had the procedure, which takes about four hours, and it entails you having to lie still. You can’t move your arm because there’s a very large needle in your arm taking out the blood and then harvesting off the white cells.

 

So it is a pretty tedious procedure but it gives you a lot of time to kind of reflect on what’s going on and everything, and I still was kind of keeping it together quite well.

Chanelle's side effects of taking interferon included hair loss, weight loss, joint pain,...

And the side effects were really bad. There was quite a lot of hair loss, a lot of weight loss, a lot of pain in my bones, was very tired all the time, very pale, would get a lot of really intense pains in my joints when I would inject myself in, you know, I would inject myself three times a week in an evening. And I would go through these cycles of feeling very, very feverish and so hot that I would have to sit in a cool bath, and then within thirty seconds that would change to this really intense fever where I’d be so hot, you know, I just didn’t know what to do with myself.

 

And that would go on for hours of an evening and it was incredibly difficult to deal with and my life changed completely really and, you know, my friends would be going out and doing things and it was even a struggle for me to walk to lectures some days. And also very difficult dealing with physical appearance changes because a lot of people say to you, ‘Oh well it doesn’t matter, you know, you just try to get better.’ But it’s very difficult if you look so radically different to your peers. So there were all these factors.

 

And we charted the progress of it and in the end it was decided that I was intolerant to this drug and I was switched over to Glivec, the imatinib.

Chanelle focuses on diet and exercise to control treatment side effects, promote healing and gain...

Have you ever thought about or tried any complementary remedies for your leukaemia?

 

I haven’t really, I mean where I focus on is my diet and my exercise primarily because it helps me control side effects. And secondary to that because I felt if I was going to do anything that would help my body heal then it would be good food and exercising, which speeds up the healing process anyway. So that was really the only course of action that I pursued, so I haven’t actually tried anything else.

 

You said you went to see a dietician didn’t you?

 

I did. Yes. And we talked about things such as cutting down of sugar levels because cancer cells can grow when there’s quite a lot of sugar content in your body. And just doing things that would give me more energy and raise my haemoglobin levels. So it was all things very targeted to what foods I was going to put inside me that were going to do good things for my blood work and stop me being anaemic as well because that can often be a side-effect of these treatments.

 

And also stop putting things that would be construed as carcinogens into my body, and stop eating lots of processed foods and high in salt foods. But also to help me put on weight as well. So I mean it was all very practical stuff really that I was going for and still do to this day actually.

 

What sorts of things were you eating then?

 

Lots of things.

 

Good things.

 

Yeah. Lots of green leafy vegetables that have lots of oxygen in them. Just no processed meats. Just cut out the salt. Really cut out kind of refined sugars. Making sure you’re eating at least five portions of fruit and vegetables, lots of whole grains. And also things that were going to help me control the IBS as well, so things like wholemeal yoghurts and kind of cutting down on things like white bread and white flour that would aggravate it. So what I didn’t want to get into was anything, there are some things that I still think I would have liked to have tried them, such as acupuncture and what have you, but I was so focused on the diet. But what I was really focused on were things that were actually going to have some effect and I could have charted scientifically that this is going to help. And then because that kind of took over, and planning out a diet is something that can just take over your whole life really, then it didn’t really leave much space for anything else really.

 

Did you regain all the weight that you’d lost?

 

Well more actually. This is possibly the heaviest that I’ve ever been. Because obviously I think when I was sixteen I was just tiny like most young girls are. And then I probably started to develop the illness when I was about eighteen. So the weight I am now is probably, physically this is probably the happiest I’ve ever been with the way that I look. And although I’m still very small it’s probably the biggest I’ve ever been as well actually.