Interview 72

Age at interview: 38

Age at diagnosis: 32

Brief Outline: She was diagnosed with chronic myeloid leukaemia after experiencing tiredness, itching, diarrhoea, a cough and breathlessness. She declined a bone marrow transplant and takes Glivec alongside a range of complementary approaches to support her body.

Background: She is a shopkeeper and businesswoman. She is divorced with one child aged 11. Ethnic Background: White British.

More about me...

She was starting a new phase of her life after being divorced but felt inexplicably tired despite having eliminated all the stresses from her life. She thought she was unfit so got herself a personal trainer who told her she wasn’t trying hard enough. She had a variety of symptoms that she didn’t connect together at the time, including dry skin and rashes, diarrhoea, a cough and breathlessness. She attended her doctor’s practice on several occasions about different symptoms and was at one point told she had asthma and was given inhalers, although having experience of asthma in her family she was certain it was not that.

 

A friend suggested she try a different surgery, which she did and within days had a blood test done after which she was telephoned and asked to go to hospital. She asked why and was told she had chronic myeloid leukaemia. At the hospital she asked many questions including what her life expectancy would be without treatment, which was estimated at about two years. She was concerned to make the best treatment decisions for the sake of her five-year-old son. After having some of her white blood cells filtered off it was suggested she should have a bone marrow transplant but she was reluctant because of the risks involved, despite both her siblings being matches. She found out about a new drug called Glivec that was not yet available in England and managed to obtain it on the NHS and has taken 400 mg each night for the last six years. Once Glivec was approved by NICE she transferred to receiving it privately through her Bupa insurance.

 

She has combined her conventional treatment with a range of complementary approaches to support her body. These include yoga, Chi Kung and reflexology. She has also adapted her diet to exclude alcohol, dairy foods, pork, fried foods, parsnips, parsley and celery, and eats only organic food at home. She also takes a food supplement called IP6 with inositol made from rice that is claimed to enhance immunity and reduce cell proliferation.

 

When her second marriage broke down she became very stressed and some of her original symptoms recurred but she ended the relationship and put her body back on track through complementary means.

 

 

She was advised not to get pregnant while taking Glivec for chronic myeloid leukaemia but she knew of others who had done so with no harm to the baby, so she didn't try to avoid a pregnancy.

Does the Glivec have any effect on your fertility?

 

No. None whatsoever. They, it has no effect on your fertility, I did, because I remarried, I really looked into this. And of course one of the problems you have now is everyone is so risk averse and concerned about being sued, so it’s very difficult to get real information. But some consultants are more willing to stick their neck out on the line than others. And I do know of two cases where people got pregnant on Glivec and went on to have healthy children. 

 

I believe it might be outdated, but the standard information at the time that I was given, which was in about to 2004, for getting pregnant, was that you should come off Glivec because they did not know the effect it would have on the children. However, that said, anybody who’d come off had never gained full remission when they tried to go back on it. And the risks of staying on Glivec to any child were very, very small. They weren’t brain damage or heart tumours or anything like that. You might have had a wonky, missing a toe or something like that. They weren’t anything which worried me particularly but that’s a personal thing and there might now be more information about it.

 

Okay. So it’s not that you can’t conceive while you’re taking it…

 

No.

 

…it’s just that you shouldn’t…

 

[mm]

 

…and you’re advised not to, so you would have to carry on using contraception while you were taking it, if you were following their recommendations.

 

Yes, I don’t think you’d be recommended to get pregnant, but that is only because there wasn’t the information, the research or the statistics to support it. But there are people who’ve got pregnant on it, have babies and are fine.

 

Is that something you wanted to do?

 

At that time, well I married somebody who wanted children, so we did look into it.

 

Did you try to get pregnant?

 

Didn’t try not to. 

 

But it didn’t happen for you.

 

But it didn’t happen. 

Since being diagnosed with chronic myeloid leukaemia 6 years ago she no longer hesitates about doing things, in case her life is short; she has been travelling and started a new business.

How do you view your future?

 

How do I view my future? Well leukaemia’s been great actually because I’ve now got a new shop, which I probably wouldn’t have done if I hadn’t had leukaemia. And any fear or reservations you have in life about doing things soon go because in case you don’t have the time to do it. So I’ve travelled far more. I hadn’t travelled very much before. I was brought up that you save up for everything and you do it later. There’s no later in my life now. If I want to do something I do it. I’ve met some amazing, fascinating people from across the world, really incredible, people that are prepared to push the boundaries, think outside the box. And I now act on my gut instinct rather than the sort of, ‘Oh well you shouldn’t do, or maybe it’s not right or…’. So long as I’m seeing my son through to his twenty-first birthday it’s been a good experience, and I really, really, really mean that. Once I got past the initial months of trips to the hospital and out of the NHS system I’ve got nothing bad to say about it. And I take care of myself now and I wouldn’t have done before, I would burn myself into the ground, I would never stop. I do stop now and you enjoy life so much more when you stop, you know, whether it’s the snow outside or the wind or the rain, those little things, the leaves falling. Things I didn’t notice before, I love. So it’s actually been quite good for me.