How did you find the tamoxifen?

Alright. At first it was I were taking tablets for my diabetic and I was taking that, and I felt a bit queasy. Then when I got it into me system excuse me. Alright.

Did you have any other side effects with the tamoxifen?

No.

None at all?

No, no.

You didn’t feel your body shape change in any way or hair loss or?

No, no. No. I had to make sure I took them tablets every day.

Was that difficult?

EhIt’s like owt else. I was taking them, and sometimes you do forget. But I made sure I took em every day if I could.

And did [your wife] help you?

Oh, yeah. She’s my carer, you see. She makes sure I’ve got all the tablets I should take.

And then when did you start your Letrozole?

The first one, oh, I can’t think of the name of it. It’s a very common one

Tamoxifen?

You’ve got it. I did that one, five years.

So you did that one for five years?

Five years, and then I went to see [name of surgeon] here and he said, I think I’m going to try you on a new one now, he said because it’s not proven or something like that, but tamoxifen spans up to five years. After that it doesn’t have the same effect, so he’s given me this one called, it’s lexitol [Letrozole] I think they call it, so I’ve been on that ever since, and he did say it would take up to ten years for the treatment to go.

And how did you find the tamoxifen?

I had no effects. I’ve been very fortunate. I’ve had no effects from either tablet that I’ve had. Never, can’t say I have. It’s been good to me. I think I’ve been one of those people that have been OK you know. No, no qualms with it. Not that I cannot even sickie even when I had the radio and the chemo I weren’t a sickie person but I’m not in general, I never have been, you know, to that point. Very fortunate. Yeah.

I started on tamoxifen more or less as soon as I got home from surgery, and I was told to expect hot flushes, but, and then when I had them, I had them! (laugh) But I’m used to it now, I, well, to be quite honest with you, if I get one a week, now, and this is six months after surgery, they’ve had no, I’ve got no obvious side effects with tamoxifen.

That’s great. So, to start with, did you have a lot of hot flushes, then, or were they just very extreme..?

I was getting them, I was getting about three or four a day, and I was just, it was, you know, the perspiration was just pouring out of me, and I would have to change my clothes, it was that bad, I was just like someone had chucked a bucket of water over me. And that was three or four times a day. Quite uncomfortable feeling, as well, feeling you’ve, I felt quite faint, you know, light-headed with them. And they’d come on with no warning, and then suddenly you’d just be, whoosh, and then they’d go. And, you know, it was come and go without any warning, you know.

So you said that you’d actually done very well on the tamoxifen, that, you know, after the hot flushes…

Yeah, I mean, no after-effects. I take one tablet every night.

Does it affect your sleep at all, or anything?

No, not at all, no. In fact, I think if I get one flush every other day, and it’s a very short period of being hot and bothered…

So they’re not of the same intensity as those ones that you described?

Oh, nothing like it, no, no, totally different. I mean, the first, I think, first month or so, I was getting quite horrendous ones, and I thought, Ah, this is going to be not too pleasant!

So did you think you’d have to have five years of that!

Well, it’s a matter of where you are. If you’re, you know, sitting on a bus, or in work, in a meeting, and suddenly you go, whoosh, and you literally, it is absolutely you know uncontrollable sweating.

And that’s all over your body?

And your whole body just goes, whoosh. And it is, it’s like someone’s thrown a bucket of water over you. And I thought, Oh no, I don’t want, I don’t want this. But they just got less and less frequent, and less powerful, to a point now it may last five minutes, but I don’t sweat, I just feel a little bit uncomfortable, it’s a little bit of a fainty sort of experience. But nothing, you know, even if you’re driving it doesn’t affect you, so you could do it, you know, no problem.

So those first ones that you had, which were very intense, did they last for a fair bit longer than five minutes?

Yeah, quite a long time, yeah, it would be 10 minutes, quarter of an hour, and you really just feel out of it. A very uncomfortable feeling. But it’s purely because you’re just soaking. And then you’ve got to go and, you think, Well, how long is this going to last, you’ve got to wait for it to finish, obviously, before you change, so, you know, it’s time out of your life, effectively, you can’t you’ve just got to get on with it.

So did you have to do, you know, just quite practical at that time you weren’t back at work, were you?

I wasn’t back to work, so I was at home, yeah.(overtalking)

So you didn’t have to take a spare set of clothes with you to work and…

No, it was okay. But I thought, if this continues into work, that would have been a problem, but it wasn’t.

People would have thought you were trying to show off an extensive wardrobe!

Yeah, yeah exactly yeah, yeah, take three changes of clothing in, yeah! But it wasn’t to be, so…

And have you been, were you affected by those at night, or was it mainly during the day?

It was at any time. There was no rhyme or reason, you know, I thought that maybe you saw a pattern, like circadian pattern, but it, there, there wasn’t.

But otherwise you’ve been, you’ve had no side effects from the tamoxifen at all?

No side effects at all. I tend not to read up on side effects for tablets, otherwise you sort of think, you know, you invent side effects, I think. It’s probably best just to take it as it happens, and if it happens, it happens.

I’m on tamoxifen.

Tamoxifen, yeah.

For five years. But, well they, they cause me a few problems so I, there again I tend to understand ladies and hot flushes, and night sweats, sometimes I’ll wake up in the night and my wife will say, you ok. I’ll say God I’m sweating, it’s pouring out of m, o she says that’s the night sweats type of thin, you know. But no, Kate, no, I’ve been fine apart from say the tamoxifen which they tell me I’ve got to take for five years.

And you were saying that the tamoxifen you get the night sweats and things, did, did you, did they talk you through some of the possible side effects of the tamoxifen?

Yeah they told me, they told me, I forget who it was now, it might have been, it may have been one of the breast care nurses, but, she was dead on, she knew, she’s obviously dealt with women with breast cancer.

And then she you know different things and she went on to explain about the tamoxifen. She said, You ma, seemingly it’s a female hormone or something that’s in tamoxifen, she says You may experience hot flushes now and again and night sweat. And she was right. (laugh) which are a pain in the bum. Then again, like I said earlier on , I’m pretty sure what ladies are going through, you know, all of a sudden for some reason you think phew, God, it’s hot in here. I’ve got to go out for fresh air. You know it’s, but ..

Yeah. And have you had any other side effects from the treatment, or from the tamoxifen?

Not that I know of, Kate I’ve, I’ve put a bit of weight on, and I don’t know whether it’s the GP or the nurse, I think they mention that it could be the tablets, you know. it’s probably putting the weight on, plus, you know, as I say, I sleep a lot better since I’ve had cancer, God knows where that’s come from, and I probably eat a bit better, so whether it’s a combination, or whether, it’s easier just to blame the tablets (laugh). For the spreading waistline (laugh). Although I’ve got a theory about that, I read an article once where female hormones in men, too many, you tend to get a spreading waistline, whether you heard it, whether I’m talking a load of rot, but I thought well I must have slightly more female hormones than the average chap.

Yeah.

So that’s why my waist is spreading’ and (laugh) – so I don’t know. You’re going to say what a load of hooey (laugh)

No, not at all.

But no, Kate, to answer your question, no, no problem at all, I mean, I complained about the night sweats and the hot flushes but they’re not a major problem, you know I can go for weeks, in actual fact I haven’t had a hot flush for quite a while to be quite honest..

I started the tamoxifen even before I had the radio [therapy], virtually I think, I think it was almost you know, as soon, soon after I came out of hospital and that really. Cos I said to him recently when I, I saw him, what did I see him?…about a couple of months ago, and I did say to him, I said about putting on the weight and that, so he said, Oh well he said it is fault, or it’s a side track of tamoxifen that you put on weight. So I said, Well how long am I going to have to take this? So he said, Well, I think it will be five years. So I said, Well I hope I don’t go carrying on putting on weight at the same pace (laugh), cos otherwise I said, I’ll be as big as a house. But you know, I think it’s just a question of now being sensible and realising what’s happening and sort of trying to combat it with the diet side of it.

And have you had any other side effects from the tamoxifen?

No.

Otherwise it’s been completely straightforward?

Yeah, I mean that’s the only thing that I, you know, I have had, and I mean that’s not actually been apparent, it’s only just sort of, carried on, and, eventually I came to the conclusion, I sort of mentioned it to somebody and that that’s when they, that, I mean they hadn’t said before oh you might be inclined to put on weight if you, you know, were taking it, which I think is a little bit naughty. You know, if there is any side effects I think you should be told that there are.

Yeah, cos then, you could have maybe changed your diet right from the beginning or something.

Well yeah that’s right. Yeah, I mean, had that been the case I probably would have tried to sort of combat one against the other, but, well that’s it, so I’ve just got to try now (laugh).

When did you start the tamoxifen? Was it just after the surgery?

Straight after surgery.

And what was your experience of that?

The experience?

The experience, how did you find the tamoxifen?

I think I put on weight. That’s all.

Did you see changes in your body?

Not that I noticed.

Not that you noticed? OK.

Other people .. (missed sentence)

So you didn’t have, apart from the weight, you didn’t have any other side effects? No pains in the arms, heavy or

No.

I might have been more forgetful.

Right.

But nothing really.

Right, OK. So you managed to take tamoxifen for the five years?

Oh yes.

The only thing it’s doing with me, it’s made me tired. That’s the only downside. Apart from that, I haven’t noticed anything different. As I say, I do know that a lot of people have a lot of problems with tamoxifen. And some, there’s a lot of women, they can’t take it or the side effects are horrendous. Now whether, you know obviously the side effects that the ladies get is totally different from what we would get anyway.

Many a time she’ll say to me, Have you taken your tablet cause I forget. So what we do is last thing at night, that’s when I take it. Cause originally I used to take it in the morning, and by afternoon I were absolutely buggered. [Laughs] So now we take it on a night and sleep it through.

And has that made it better?

Oh yeah, I think so. Cause as I say I still am tired during the day, but it’s made it a lot better-

Good.

-I think most of the effects of the tablet I probably sleep through. I dream a lot, whether that’s owt to do with the tablets I don’t know. I dream a lot of rubbish.

Right. More so than before?

Oh yeah, I think so. But that again, I also put that down to age.

I’m on tamoxifen, twenty milligrams, take one of them. They’ve had some weird effects on me.

Do they?

Yeah.

Tell me

They do at first. They do at first.

So what sort of effects have you felt from them?

Well, the first effects I got was emotion. I mean, I’d watch Coronation Street and start crying, you know what I mean?

You see, I could do that, but then!

Yeah, yeah, but I’m not like that, you know? It’s so different to my nature you know? I mean, I’m not that type of person, you know? You know, and I, or, see a dog die, you know, and think, Oh, you know what I mean? But it stopped now. I’ve got over it, now.

So how long would you say that lasted for?

Well, that lasted for about the first year. That lasted about the first year, but this last sort of six months, you know, I’ve been like, the only, I itch it makes me itch, and it’s like Chinese torture when I start itching, you know? Places you can’t get to, I don’t ever scratch, you know what I mean? Down me back, you know and the other sort of side effect, I do get a little bit of trouble with me arms. Me arms get very tired, you know, they ache. Whether that’s anything to do with it, I don’t know.

And so the tamoxifen, you’ve been on that for about eighteen months?

I’ve been, yeah. That starts a month after the radiotherapy finishes, tamoxifen. I’ve been on that, but I mean, I get on the sites, and lot of the women coz it’s an hormone, but it is a woman’s drug, isn’t it, really it’s a woman hormone drug. It just said it is a funny one to have to give you, but there’s nothing else we can give you. They looked at several other drugs what was a possibility, but I wasn’t receptive to them and the type of cancer I had wasn’t receptive to them, so they said, There’s not much point in giving them to you. You know, so that, so they obviously put me on tamoxifen.

And have you had other side effects, then? You said you’d had the sort of itching and the emotional

Yeah, you get a lot of itching, yeah.

The emotional side of things.

Yeah, but the emotional side of things has gone, now. I don’t get that now, you know? But

Yeah and that was making you feel just more tearful?

Yeah, it made me feel stupid, really, you know what I mean? You know, coz all of a sudden, you go from being a macho man to the big baby, sort of thing, you know what I mean? It was quite, it was quite well you know, and I’d be trying to hide it, you know? You’d sit there, and it’d suddenly come on silly, you know? You’d be you know, God, my eyes keep watering, you know? (Laughing.) Yeah, and it was quite funny, really but that was basically it, really. The itching, I still get the itching quite badly.

Yeah, so were you relieved when that sort of emotional side of things went away?

Yeah, well I got used to it, really, you know? I mean, in the end, I made a joke of it, you know? I said, I can’t help it, that’s how it is. But I told the oncologist, and he said, Yeah, he saidWe’ve had a lot of people say this can happen, you know? You know, he said, you know he said, a lot of women have said this can happen, you know? But otherwise, you know, nothing bad, really. I can’t really moan. I can’t complain about it, you know? But I suppose, I’m sixty-seven now, anyway, so I mean, perhaps I’m expecting too much, you know? Perhaps that’s what happens to you when you’re sixty-seven. But it seems like old age and that’s come together, type of thing, and I suppose it affects you that way you know. I don’t feel like I’ve had cancer.

And are they recommending that you stay on the tamoxifen?

I’ve gotta stay on it for five years.

Five years, so you’ve got about another three and a half to go?

Yeah.

Yeah.

Yeah, about three and a half years to go on it. But they’re not a problem actually, they’re a good sleeping pill, actually.

Are they?

Yeah, they make you sleep, yeah. See, what I do, I used to take them in the morning, and I would be quite sleepy all day so I stopped taking them in the morning and started taking them at night, and I take it, within sort of half an hour, I’m (snoring noise), I’m gone, you know? So I use them as a sleeping pill, really. It’s quite useful, you know?

Yeah, well probably looking back I’d started on tamoxifen tablets in the December of 2006 or – or maybe the January I can’t remember, and I was thinking the tiredness was probably associated with that, but it could have been equally the Herceptin that was causing it, to feel tired as well. And so once that stopped, yes, you stilltiredness was a problem with the, problem with the tamoxifen maybe it was just getting over the operations maybe it was the chemotherapy, I don’t know – but, in that initial year or so, you could get very tired in an afternoon and people, other people, women I’d talk to that’d had breast cancer they would say the same, they would get tired. They changed my drug of tamoxifen onto the new type of drug, in 2008, August 2008 and that’s been, that’s been I’m more or less back to normal in terms of how I feel on a day to day basis, I’m not saying I don’t get the odd day when I feel tired, but it’s pretty rare occurrences is that now.

And so what’s the drug that you’ve changed on to now?

it’s – I’ve got it in the kitchen.

Yeah, ok we’ll have a look at that, it’s on the tip of my tongue, I think the one that I think it probably is, but
And I mean I read about these new type of drugs in The Times newspaper, there’s an article about them, and I thought well I’ll go on that, because it specifically said the effect of these was to reduce the tiredness in people and so I was keen to have a go. However, because of the track record of tamoxifen they wanted me to be on them for 18 months before I came off them and went on to the new ones.

Right.

And that’s what I was.

Yeah, so you did the full 18 months on tamoxifen.

Yes I did yes.

How do you find the tamoxifen?

Sometimes, I get quite hot with it, and other times I think it makes me sleepy. I always nod off after my lunch and after my tea, but I might have done that anyway coz I was inclined to do that anyway. I think it makes me a wee bit sleepy, and sometimes I have hot flushes with it but I have to persevere with that for five years, so I just get on with it. But it’s no big deal.

Right, ok. So you don’t get any major some men have been complaining about pains in their joints and their legs and things like that?

No, nothing like that.

What about mood swings?

As far as the tamoxifen’s concerned? No, I don’t have that.

No? Some men have been complaining about getting quite angry with it.

No. I don’t think, no, I don’t think so, no. No, no. No. I never heard, is that so? I must tell my wife that one. If I get angry sometimes, I’ll say that it’s the tamoxifen. No, I haven’t found that at all.

No, that’s good. So you manage to take it without too many complaints?

Yeah, but I have to remember to take it, you know? The fact that it’s only one pill a day and I take it in the morning, you know, and [name of wife] will say, You haven’t taken your pill yet. Coz I take it out when I’m having my breakfast to make sure I don’t forget and sometimes I do. You haven’t taken your pill, you know? So I don’t know what I’d do if I was on a lot of medication. I have to say that I’m finding that my memory is bothering me a wee bit. I think that’s my age, as well you know, sometimes my memory’s causing me problems. Physically, I’m fine, but mentally I’m not as sharp as I used to be. But that’s not the tamoxifen. But I need to remember to take it.

And how do you find the tamoxifen?

Oh, tamoxifen – I find myself a bit moody. My problem was my eyes and my problem with my bones with tamoxifen, because it is only when I really, the pain really – it started coming back when I started tamoxifen back again and I was going to gym and do all fine, but soon I started tamoxifen – all the pains came back again.

And do you take it regularly?

Yes I do, every day – twenty milligrams, every day for the last one and a half ?

So even although you have all these side effects, you’re still going to keep taking it?

Yes. Yes. Yes. To get the benefit, yeah. The side effects is not, you can live with that.

Ok, and you said you took, is it calci-chew that you take now for your bones?

Yeah, for the bones, my tablet, and my doctor said you need some sun – I said, well, I’m going holidays

So it’s a good excuse to go back home?

Yes, that was, yes.

Ok. Very good. Are there any other side effects with the tamoxifen that you
No, not that much. No not that much. Usually side effects, and everybody got that side effect, not unusual one, yes.

So obviously the tamoxifen is a, it stops the hormones, it’s the hormone treatment – has that affected your relationship at all with your wife?

No, that’s fine.

And what was your experience of taking tamoxifen?

Ha- well I took it for five years, I’m afraid the main experience was that it had a terrible, inhibition on your sort of sexual side, you know. That was the sad thing. But we coped fine. Cause it’s sort of hormonal.

But after five years, my oncologist said, Its still- we’re working with this, we haven’t completed all of the research yet, but I could recommend to you that it’s still worth carrying o. I forget he gave me some percentages or something. So I said okay, I’ll go on taking i, and I went on for about seven years, and then I had my hip operation, and after the hip operation, I got a thrombosis in this leg you see. Which apparently is quite common, it was silly story, I won’t get into all that but they found it luckily, locally in the GP they found it. And I was five seconds later I was up in [name of hospital], getting sort of warfarin and all that you know. But, during the course of all that, somebody said, Are you on tamoxifen And I said, Yes. Ah, you know that can induce it- that kind of helps the thrombosi, so I said, okay that’s it, stop Now they tell me, you know. I mean it’s all percentages and things, but I thought it was as good a reason to stop as any. So that very day, I said right, that’s my last tamoxifen pill, soon as I heard it, you know. But I already had a thrombosis, but, and I thought, that was funny because they knew- I mean I had to go back and make a few statements up in the [name of hospital], because they knew actually, that I was taking tamoxifen, they took it over and administered it for me. So- and they also knew that apparently it encouraged the formation of a thrombosis. So I didn’t think that was very clever.

When did they put you on the tamoxifen?

It was straight after the operation.

Did you have any side effects from that?

As far as I know I didn’t. I still get effects that I’m, I feel very tall sometimes. I feel about seven foot tall and the ground is so far away. And when you walk downstairs I think "oh it’s a long way down", you know. But I think it’s just the combination of drugs I’m taking at the moment.

Is it a kind of dizzy feeling?

No it’s just that you feel, you feel rather tall that’s all. Yeah. Very funny feeling, yes.

And when did they change to Arimidex?

Once they’d said you’ve got to have radiotherapy. I think they changed it then.

Did you notice any difference?

Not really no because I had no side effects from the tamoxifen.

And then with the Arimidex?

No, no.