How do you feel about taking a fairly new treatment?

Well, very happy to take anything that’s available really. Because I chose it, I chose to have it instead of chemotherapy partly because I knew, I hoped it would work better than chemo. I didn’t know whether it would work at all, but I was hopeful that it would work. And because my experience with the chemo made me feel so ill, I really just didn’t want to have that again. I know that if there was no alternative, I would have had it again. But if there was a choice, then I took the choice.

You’re pleased with that decision?

Oh, oh, I’m so grateful. I don’t think that I would be as well now as I am had I gone for more chemo. Because if my first-stage treatment really only was effective for nine months, second stage treatment could well have been less. And I’m now, you know, it’s nearly a year and a half since I started on Tarceva, and it’s still working very well.

So where do you find support for all this? You’ve been through an awful lot. Family and friends?

Family and friends. And my husband. My husband gives me the greatest help, support and encouragement. We are able to discuss the situation fully and honestly which is a great relief. I think this is very important. I do get very tired, a side effect of Tarceva, but we enjoy walks, outings and holidays together and he is always considerate of how I am feeling at any time. I am always aware that in normal circumstances we would be doing far more, but we do enjoy all the things we do together.

Yes, my friends are very supportive. I’ve got a little group of friends that I’ve known for many, many years and we’ve, it’s a bit of a sisterhood really. We meet up, whoever, whichever, there are seven of us now. One friend died a couple of years ago. Seven of us meet up regularly on Mondays and go for a walk and then take it in turns to make lunch. We don’t all get there every week, but we, whoever’s there will go. We don’t go Bank Holidays and we don’t go family holidays and that sort of thing. But it’s a very casual and loose sort of arrangement. We do try to keep it up. And they’re very helpful. Some of them have had cancer of other sorts as well and, or some of them have had breast cancer. And I find them a great support group. Even though they haven’t had what I’ve had, they’re a good support group, yes.

What’s your view in general about the National Health Service after all this treatment that you’ve had?

I think that it, it needs to be funded in a different way. This is just my personal view. I don’t see how the National Health Service can go on doing what it needs to do out of general taxation. I really think there should be some different way of funding it. And I don’t know how that would work. Possibly something like the French system, although I don’t think that doesn’t seem to be, I mean people always quote it, don’t they? but it does struggle, even so. I think, I really think possibly something like some kind of insurance that people pay, instead of the way it’s done now with the health service being allocated what can be spared at the time out of general taxation. That’s the way it seems to work now, isn’t it?

Have you come to that view because you’ve felt sometimes there was a shortage of staff?

No, I’ve always felt that. I think that as time, as time goes on and more and more wonderful drugs are available, and people are going to live longer and be treated for things for longer, and more and more of them, I just cannot see how the health service can go on with the system of funding that it has and be expected to do what it’s expected to do. I just think it needs a lot more. And I don’t think it can just be, I don’t see how it can work under the present system.

Have you any idea how much Tarceva costs?

Yes, it’s approximately £1600 for a thirty day supply. It is very expensive.

Yes, like many other chemotherapy drugs.

Yes, yes, indeed. And, but the thing with Tarceva is that it’s not a limited period of treatment. For as long as it works, I’ll be taking it. And as long as, well, my, as long as I, as the side effects don’t become unbearable and as long as the treatment is working, I’ll be taking it. So, you know, nobody knows how long that will be.

it’s given you quite good quality of life, hasn’t it?

Yes, it really has. Yes, I’m very grateful for it, very grateful for it, yes.

My symptoms started in 2008. I’d had surgery for a different condition and shortly after, well, during that time I was aware of noisy breathing. My lungs actually, there was no discomfort, no cough, nothing like that, but when I breathed out sometimes it was almost like an instrument tuning up. And at first I thought it was funny. But of course it wasn’t. And I eventually went to the GP. The first occasion he couldn’t hear anything, thought I might possibly have asthma, but no further treatment was given. However it continued, so I made another appointment and saw a different GP at the same practice. And she too thought it might possibly be asthma, gave me a puffer. And then I was really quite worried because it just kept on. And eventually I developed a lump in my neck, a swollen gland, and went back and saw a different GP, who prescribed antibiotics for a week. That had no effect. He tried a different one, and in the meantime sent me for a chest X-ray. And immediately, the next day contacted me to say that he needed to see me.

And actually I went on like that for, until September 2009, when, after the routine X-ray, they told me that there was some sign that the tumour had started to grow again.

What were your feelings when you heard that?

That was, yes, that was very disappointing obviously. So I already knew that there were options available, but it, and these were discussed with me. I knew that surgery wasn’t an option. And the clinic, they actually went to quite a lot of trouble to find my records of radiotherapy from over twenty years ago when I’d had breast cancer, to actually see the area that had been covered by that radiotherapy, to make sure that I couldn’t have radiotherapy again. Which I thought was, I was quite impressed by really, because the records had gone into store somewhere and had to be retrieved. And anyway I was given an appointment with a radiologist, who said, no, it, you know, it wouldn’t be possible to do radiotherapy.

Back to the oncologist, and my options were explained. Which were either more chemo, with different drugs, not the same ones that I had before, or erlotinib, which is one of the targeting biological drugs. And it was my choice. It was explained to me that if I had the chemotherapy it wouldn’t necessarily work as well as the first treatment, because second-stage treatment very often doesn’t work quite as well as first-stage treatment. But that was my choice. Or I could try erlotinib, which is Tarceva. Tarceva is the brand name. And I was told that that doesn’t always work, but going by my history they thought it, you know, it probably, I might be a good candidate for that. That is a tablet which is taken every day for as long, as it was explained to me, as long as it’s working and as long as the patient can tolerate the side effects, which can be quite severe.

How soon after you started Tarceva, erlotinib, did you started to get side effects?

Within about ten days, I would say. There are various side effects, and the main one is a skin rash. Which I did have. It seemed to me to be very severe, but when I went back to the clinic they termed it a moderate one. The procedure was that you were given an appointment two weeks after I first started taking the tablets, so that they can then assess what the reaction is and what to do about it. So it was a pretty horrendous, facial rash. Like very bad acne, that’s the way it’s described. And my entire face really was covered in spots and it was tingly and sore. But that, my rash was deemed to be a moderate one. I was then, and it was also, I was also told that it’s probably, it’s thought to be an indication that the drug is actually working, because it targets the skin in the same way that it targets the tumour. So the treatment for that was antibiotics and steroid cream, which they said would clear it up, you know, within, well, with a bit of luck within a couple of weeks. And in fact it did subside. I do have recurrences sometimes and have in fact recently, just a couple of months ago had a bad reaction on my face, for no apparent reason, for which I had to have steroid cream, steroid by mouth and antibiotics, a month’s worth of antibiotics. But that too has cleared up. It does leave, it does leave a mark, but the actual rash has cleared up.

When you say leaves a mark?

Leaves little blotches, little purple blotches almost like a little bruise where the spots have been.

Does that fade eventually?

It does. But I do think it depends where on the body it is. I mean it, the rash can appear anywhere on the body. And I’ve had spots in my scalp, on my face, on my legs, arms, just, almost anywhere really.

So what other side effects did you have? Did it affect your nails, for example?

Yes, my nails are a mess. My hair has gone very frizzy. Not immediately, it took several months for that to happen, in fact almost a year for that to happen. My nails are very bad. Another side effect that lots of people get is diarrhoea. And I’m very fortunate that I only very occasionally get diarrhoea. Very dry skin and sore itchy eyes is another thing. But I’ve managed to find products to help the eyes. Which is very helpful. Indigestion also is something I get. Apparently Tarceva can, can cause stomach irritation.

Which products did you find to help your eyes?

Oh, well, using some form of artificial tears. And for me the most effective is something called
Can you get that from the chemist?

Yes, you can. I must tell you because it’s such a good one. Viscotears. Viscotears is just a gel in a tube and a drop and can be used three or four times a day when needed. And I get that on prescription, and if necessary I buy one as well. I can, you know, supplement it. And I’ve also found another product, which is made by Simple, which is a balm, an eye balm which can be used on the eyelids and won’t hurt if it gets in to the eyes. So that’s something which is very, very helpful, for anybody really, not just for people with this condition. The clinic advise regular use of moisturising creams and actually give out a sample of E45 and Aveeno cream. Which I do use. I’ve also found now that I can go back to a normal moisturising cream. Which is better as a, you know, for purposes of moisturising it does a better job. And plenty of body lotion, because wherever the rash appears it must be kept moisturised. I think otherwise, you know, infection might set in. And I have had one occasion of one, just one spot in the groin which developed into an abscess. Which was absolutely horrendous. And so I’m very, very much on the lookout now. And I make sure that anything, any spots are, are not ignored, that are, you know, they, either treat with moisturiser or if they feel a bit sore with the steroid cream to keep on top of it. It does seem that my skin isI mean the skin is much more vulnerable to things than it would have been before.