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Tamoxifen

12 REPLIES 12
OrangeGirl
Member

Re: Tamoxifen

Dear Pollyp,

 

I think you are in a win-win situation.

Take it and if all is well (which is just as likely as not) then - bonus.

If all is not well then you can honestly say you tried (is that what we can all only hope for?) and not beat yourself up because the % change in survival statistic is minimal.

What have you got to lose?

 

Good luck.

 

PS I can't tolerate Tamoxifen and stopped it after 10 months but because I managed my chemo as 100% doseage of FEC 100% on time at all 6 treatments, the difference in % survival Tamoxifen gives me on top of that is barely a 2% increase. Mostly FEC is reduced as treatment regimes continue so I feel I gave myself a bit of a headstart! (That's what I tell myself anyway!)

Charys
Community Champion

Re: Tamoxifen

Hi dizzybee, 

 

it comes down down to a 'quality of life' issue for some women, unfortunately. Do the potential tamoxifen benefits outweigh the problems / ill health it is giving you ? When the scales tip in one direction or the other it becomes clear, but it's hard at this decision point. Message me if you like Dizzybee, happy to talk, but wary of being too negative on here as I don't want to put people off ...there's no doubt that for most forunate people it causes no problems.

Pollyp
Member

Re: Tamoxifen

It's so hard to know what to do sometimes. I picked my prescription up a week or so ago and have not started yet. There is always another 'excuse' to wait. I'll just wait until after this appointment etc!
I spoke with onco doctor who agreed in my individual case (stress each person is different) I had only a small % benefit. He felt to try it and if no unmanageable side effects all well and good but if the side effects were disrupting my life significantly then he was happy for me to stop. It just feels another thing to gamble with. Due to start rads in week or 2 so I suppose If I'm going to take them I should sooner rather than later. Breakfast time in morning for me I think.
Best get writing the days of week on them (good tip thanks)
Dizzybee
Member

Re: Tamoxifen

I'm in a bit of a quandary over whether to continue taking it. I've had it for six weeks, the MDT decided I should stop it but my oncologist wants me to take it, so I'm waiting for an appointment to discuss it further.

But I can't switch to another hormone treatment so I want to know what the risk reduction is for me. Charys, I think that's your point, that it's not necessarily conferring a high degree of protection.

It isn't that the Tamoxifen caused a problem, I had endometrial thickening and a polyp, so Tamoxifen is likely to cause more gynecological problems if I continue. It couldn't have caused the problem, it happened after  three days.

ann-m
Community Champion

Re: Tamoxifen

I've been on it for 6 months now, Lb. I don't worry too much about exact timings, I just take it after breakfast.
Once I took a double dose by mistake - & boy, I knew about it later!, so I now write the days of the week on the blister pack with an indelible pen, so I know where I am.
Just start off with what's best for you & take it from there,
ann

ann-m
Community Champion

Re: Tamoxifen

Hi ladybowler,

After overthinking it all, I finally decided to start tamox at the time which would be best for me in getting into a routine, which was after my coffee & toast in the morning. My thinking was that I could then change it, if needed, depending on how I responded. As I've been fine on tamoxifen, I've kept to the same routine.

Charys
Community Champion

Re: Tamoxifen

Hiyer Totas,

 

I've copied and pasted a link here to the tamoxifen booklet, which you may have already been given by your breast care nurse, but if not you can download as a PDF.

 

https://www.breastcancercare.org.uk/information-support/publication/tamoxifen-bcc20

 

The leaflet says 'Tamoxifen works on the whole body (known as systemic treatment) and

blocks the effects of oestrogen on the receptors. This helps to stop any
breast cancer cells from growing.'
 
It doesnt actually stop oestrogen being produced in your body, but stops it from being able to reach cancer cells, therefore meaning they can't grow at all, or stop growing.

 

Beth123
Member

Re: Tamoxifen

Hi Totas

ive been taking it for 3 weeks now so early days. So far it's been ok. I've only had one proper hot flush but do get a bit warm in bed at night - in fact I don't get really cold at all any more! Going to save a fortune on my heating bill but may have to get hubby a onesie to keep warm lol.

i had a few subtle headaches the first week but none since. Week 2 I had 5 days of really bad trapped wind but solved that with Windeeze tablets and peppermint oil capsules (did check these out with pharmacist first). Had a couple of days feeling like I had crazy PMT but that's gone now too. Last thing I can think of just now is spots. I've had a breakout for the first time in over 20 years. 

My consultant refers to tamoxifen as a miracle drug and I know it has pros and cons but they know better than I do, so I'm taking it as instructed. My understanding is that it stops my body producing oestrogen which my cancer was reacting too and sort of "feeding on". 

I take mine after food in the evening. So far, I'm happy enough and everything has been temporary and manageable. 

Go for it. It's got to be worth a go!! X

ann-m
Community Champion

Re: Tamoxifen

Hi Totas,

Please try not to pre-judge it, the majority of women tolerate tamoxifen well, understandably those with problems are going to report it, which can be anxiety provoking if it is on your treatment plan.

I've been on it for 6 months now & all's well, some hot flushes or 'warm glows,' but nothing else significant, it has not affected my mood & my weight is stable.

As Charys says, you will only know how you react by taking it & IF you do get side effects then you will deal with it.

On starting tamoxifen, I took it after breakfast as this was the best time for me & taking it after food is probably better to reduce any nauseous feelings. I also write the day of the week on the blister pack with an indelible pen, as one day I took a double dose by mistake & boy, did I know about it later, I certainly had side effects that day!

 

Please don't worry, you may well be fine on it or at least find any side effects manageable.

ann x

 

 

Charys
Community Champion

Re: Tamoxifen

See, told you people would come along who had no problems with it! Lol

 

However, Can I just comment on your statement powdow 'most probably saving my life'. I just want to make clear, from my understanding, it is a medication that improves chances of hormone receptive breast cancer not occurring again. In my case I would get a 5 percent 'potential' better chance of non recurrence over a ten year period, or as my oncologist said it will be effective for 1 in 20 women who have had a hormone receptive breast cancer. Maybe your percentage potential gain is higher ? Or it is currently being used in treatment for an active hormone receptive cancer and keeping it in check, hence your stronger feelings?

I think it's important to make that distinction, as there are women who feel quite emotional about not being able to take it, as they have been taken off it by medics, and feeling it could mean they could die without taking it, isn't realistic. I hope you don't mind me saying that, i don't want to be negative, I'm pleased for you that yours is not giving any problems, and really pleaseed you told Totas. X

Powdow
Member

Re: Tamoxifen

Totas, I totally hear where you are coming from, I was the same. Had mx and recon and avoided chemo just rads and tamoxifen and I was dreading starting it. Picked up the prescription and I didn't go to the chemist. It was my hubbie who took it in, I was pretty annoyed actually! My school friend was up from down south and we met some other school friends and went to the local pub. The chemist was next door. My hubbie disappeared for a bit and lo and behold he had went to pick up the prescription!! I just wanted to forget about it for a bit.
Anyway that was a Thursday and I reluctantly started on the Monday...... and I have been fine!!

I did get an odd hot flush but not very bad and actually hard to distinguish from perhaps just getting a bit hot in the face as I do at times. Even that seems to have tailed off. I also had some dull headaches at the beginning, again nothing much, and GP said (I was there for something else) sometimes until your body gets used to it you'll get that. Again they are away now. I'm halfway through my second pack and I still haven't had any of the side effects so now I am embracing that wee tablet that is most probably saving my life.

I'm sure you'll be fine. It's the ladies who get the side effects that are going to post.
Charys
Community Champion

Re: Tamoxifen

Hiyer Totas,

 

I was in two minds about responding to your post, because my tamoxifen experience wasn't good. However, here's what I will say (and there will be many others along who have had a totally fine experience!) you really won't know unless you try, and if you don't try then you might always regret it. Despite now not taking tamoxifen, I am glad I put some effort into attempting to for my own peace of mind.

The side effects, IF you get them, can often be managed (e.g. venlafaxine for hot flushes, evening primrose for a few other things, splitting the dose into morning and evening rather than once a day if some nausea etc) and if the side effects are unmanageable for you then you can always take a break from it. The side effects are reversible. Loads and loads of people hardly know they are taking it, and side effects are minor often resolve within a few weeks/months for others, of course there are a small percentage of people who struggle beyond what they can cope with, and whose life quality is affected significantly. However, those people are a small minority and you are more likely to fall into the first category.

May I ask, are there any side effects in particular that concern you?

 

Charys x

Totas
Member

Tamoxifen

Hi,

 

A month ago today I had a mastectomy and construction.  I am due to start taking Tamoxifen treatment next month and I'm petrified of the possible side effects.

 

I would really appreciate it if anyone would be so kind to share with me, from your personal experience, any do's or don'ts, pros or cons when taking this drug please?

 

Many thanks.

 

Maureen