Interview 63

Age at interview: 40

Age at diagnosis: 28

Brief Outline: She was diagnosed with chronic myeloid leukaemia after developing tiredness, aches and pains and weight loss. She was treated with interferon then moved to Glivec (imatinib). Her disease is stable but she regrets that treatment has caused infertility.

Background: She is a Human Resources Consultant. She is married with no children. Ethnic Background: Asian.

More about me...

She began to feel very tired and sleepy with aches and pains and was also losing weight rapidly, all of which made her everyday activities a struggle. She went to her GP, who took a blood sample and phoned within 24 hours and asked her to return to the surgery for the results, where she was told that she had (chronic myeloid) leukaemia. She was admitted to hospital where they first removed her excess white blood cells then treated her with interferon and some other drugs. She remained on interferon for some years and initially was scared of injecting herself so her husband did this until she summoned the courage to do it herself.

 

A few months later one of her consultants thought her CML was progressing from the chronic to the accelerated stage and that a bone marrow transplant was needed. All of her siblings and cousins were tested but none were a close enough match to be a donor so it would have to be an autologous transplant. Meanwhile, she travelled to the Memorial Sloan-Kettering Cancer Centre in New York at her own expense to obtain a second opinion, which was that her disease had not progressed so a transplant was not necessary.

 

In 2000 she was one of the first batch of patients who were entered onto a trial of a new drug called Glivec, and she has remained on this drug ever since. Having become used to having to carry the interferon injection kit with her wherever she went, she found taking one pill of Glivec per day much more convenient. She had been unaware of any side effects of the interferon while taking it but as soon as she switched to Glivec she realised how much better she felt.

 

At the time of diagnosis she had been married for less than a year so her newly married life unusually became dominated by hospital visits and treatments. A few months after diagnosis she decided to give up work in order to concentrate her energies on getting better. She returned to a part-time administrative post about eighteen months later. When she was told that her disease was under control she felt better able to plan her life and decided to return to full time education to do a masters degree and begin a professional career.

 

When she was diagnosed she was given the opportunity of freezing some embryos before starting treatment that would affect her fertility. However, at the time she and her husband did not take up this offer, preferring to concentrate on treating the leukaemia, a decision that she now regrets. It may not be impossible for her to conceive a child now but she would have to stop taking her Glivec in order to do so, placing herself at risk of recurrence, plus research evidence suggests that any resulting fetus may not be entirely healthy.

 

 

 

She was repeatedly encouraged to harvest eggs before treatment for chronic myeloid leukaemia but...

But it has obviously, I think it has affected, it’s played a part in us, me not having any children. Not because it was completely medically impossible, I don’t think that is true, but I just think, you know, at the time we were given the option of freezing the embryos. But it was such a difficult time and such a confusing time for us, because at the time of diagnosis I don’t think we, and besides we were young then, so we didn’t really think about, we hadn’t really thought about children and family and all of that. And when this option was given to us I think we just, you know, we felt we had to deal with the illness and, you know, this could probably take a back seat. 

 

It would have been completely possible had I persisted, but for some reason we never actually got round to weighing up the pros and cons and making a decision and sticking with it, which is something at the time it didn’t seem like a big deal, but now in hindsight I feel that’s a major chapter in my life which is probably missing, which needn’t have been missing, you know, had we had the foresight. But, you know, on the whole I can’t complain. I mean the drugs worked fantastically well for me, you know, I’ve still got a good career and, yeah, things are fine, so yes. 

 

Do you think when the professionals talked to you about this at the very beginning that they could have done more to kind of spell out for you the size of the decision, you know, the importance of it at the time, or do you think it was kind of brushed under the carpet in some way?

 

No, I don’t think it was brushed under the carpet because they have, I think on their part they did actually do what they can. I think they did do what they could at the time because they did repeatedly ask us to come in and, you know, make it or make an appointment for coming and sort of getting the eggs harvested and so on. But we never actually took them up on that offer and we never actually took it seriously. Maybe, I mean on that front they were quite eager to get the process, you know, up and running, but maybe if they had somebody who, like a, you know, not a counsellor but somebody who, an information officer or somebody who could have actually just taken us through the, you know, the pros and the cons of not making this decision. That might have, you know, signalled some sort of alarm bells in us and, you know, amidst all of this other confusion of trying to adjust to this, you know, being diagnosed, and treatment and all of that, maybe it would have made us stop for a bit and think about it. But I don’t think there was any of that. It was just that we were referred to the maternity, you know, this other service and they just kept telling us to come in for our appointment to harvest the eggs. So that might have helped. I don’t know, but no, there wasn’t anything like that at the time.

 

She says that being diagnosed with chronic myeloid leukaemia one year into her marriage altered...

 I think the initial diagnosis kind of hit us both a little bit. I mean we’d been married just a year to the day almost, when I was diagnosed, so that was very hard. Obviously it kind of changed the, what can I say, it changed the dynamics of the relationship in quite a major way, because you don’t really expect something like this to happen to you when you’re newly married and, you know, you’ve got your life ahead of you. 

 

Then it’s been a learning curve since then, you know, things have not helped, things have not worked out for us in the normal sense of the terms and, you know, as in getting married and, you know, discovering new places, new things, interests. All of those things have kind of just come by the by. It’s always been my illness and my treatments and, you know, rushing round from one place to the other, the hospitals and so on, and concentrating on getting better. That’s how it’s been for us. So it’s been slightly different sort of dynamics. But it’s been a long, it’s been long sort of twelve long years, so hopefully, you know, it’s not been that bad. 

 

How do you think your husband’s coped with your illness?

 

He’s taken it in his stride. He’s been very supportive. Obviously it can’t have been completely, you know, completely without disappointments for him. As I said, the circumstances in which I was diagnosed were quite unfortunate. I’d only been married for a year and, you know, we were still kind of discovering married life and all of that. And all of that was suddenly abandoned and everybody’s attentions were now focused on me getting better. So it couldn’t have been easy for somebody who was, you know, suddenly found themselves from a position of being a husband to one of being a carer that, you know, yes people do that but maybe not, you know, a year into their marriage. So I think, yeah, but he’s not a very expressive person anyway. He’s quite a sort of, he keeps things to himself a lot. But it’s been quite hard on him I think. I think he does have some bitterness, but on the whole he’s been very, very supportive and he’s looked after me very well and encouraged me in, you know, in sort of professional pursuits and so on.

 

Once she found out her chronic myeloid leukaemia was unlikely to come back, she studied for a...

But I think one of the major decisions I took was to go back into full-time education and do a masters. And I’d always wanted to do it but I never felt, because the prognosis wasn’t that great and the doctors were, you know, every time I asked them about, you know, whether I should commit to a longer term plan of any sort, they would always kind of look a little bit hesitant. But I think the day the doctors actually said to me, “Listen. Your Philadelphia chromosome has actually...” - I think the word they used is it’s reversed in some way - and, you know, “The disease has actually kind of stopped still in its tracks”, rather than the danger of it being, you know, moving the other way. That’s the time that I felt, “Okay. Now I can actually commit to a longer term plan”. That’s when I decided to do my masters. 

 

So that was, I started doing my masters in 2001. Obviously, I planned for it, I applied and all of those things. 2001 to 2002 I did my masters. Before that, all of, up to that time I was just working in my administrative job. And then after doing that, that’s when I kind of moved into a professional career. So before that I was just a, I was doing other work. But I always wanted to do that, so sort of get a professional qualification and then move along in that career. So that’s what I did then, which has been really good, so I’ve been lucky in many respects. 

 

At first she had interferon for her chronic myeoloid leukaemia but then switched to Glivec which...

 And so that’s how it’s been. Well, initially interferon, and since then my drugs have changed. In 2000 I was lucky enough to be part of the Glivec trial, or the imatinib trial, as it was known at the time. I was one of the first or second, one of the sort of initial group of patients who were on trial, and luckily it worked very well for me and since then I’ve been on Glivec. And yes, I’m doing fine, so things are, I think, nicely balanced out at this stage. Yes, so it’s not been a very difficult ride, you know, it has had some impact on work and on family but overall I would say I’ve been lucky with the way things have turned out for me. 

 

So you’ve been on it for what, eight years or something?

 

Eight years, yes.

 

So is the plan that you stay on it indefinitely or what’s going to happen?

 

I think that’s the plan, yes, unless they discover, as part of this research, that there are huge things that are, you know, huge side effects to Glivec which are not great. I think the plan is to sort of keep going for as long as it, for as long as it takes really. It’s working okay for me and I think what the doctors say is that the longer the period of time that the illness has actually been on a lower sort of a depressed level, and the counts have been very low for a large number of years, that the further the, I mean the less the chances are of it actually, you know, climbing up again. So if that’s the case… I know I’m speaking like a complete novice here but, you know, that’s the way I see it. So as long as that’s the case then it’s fine, I’m quite happy to go along with it.