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Do you have to take Tamoxifen at same time?

16 REPLIES 16
Butterfly318
Member

Re: Do you have to take Tamoxifen at same time?

Hi Chrissie

 

Really pleased to hear you having a good experience of Tamoxifen. Hope the treatment is positive for you. 

 

Take Care  Butterfly x

ann-m
Community Champion

Re: Do you have to take Tamoxifen at same time?

hi Chrissie,
Its good to see positive experiences reported as, understandably, the problems are reported which can can be anxiety provoking.
Like you, I've been on it since May with no problems to speak of. Most women are fine on it or at least find any side effects manageable.
ann x
Arly
Member

Re: Do you have to take Tamoxifen at same time?

Thank you for posting this Chrissie- taken my first one today so hoping to have a similar experience to you! 

Chrissie2
Member

Re: Do you have to take Tamoxifen at same time?

Just joined the forum. I started taking Tamoxifen at end of November 2016 for secondary bc. I have been on various other treatments over the past 3 years when I had terrible aches and pains and felt much older than my 68 years. I am glad to say that since starting the Tamoxifen, my aches and pains have subsided tremendously and I feel like a new woman except for fatigue but that is a result of radiotherapy last year. I was dreading going on Tamoxifen after hearing reports from different people about their side effects especially hot flushes. I take mine just before going to bed as suggested by many other people but, again it depends on the individual.So far, my experience is good so it just goes to show how different we all are. I just hope it lasts and that it has the desired effect. Best wishes to you all with your treatment
Arly
Member

Re: Do you have to take Tamoxifen at same time?

Thank you so much for this Butterfly! Your story is really helpful.  Start Tamoxifen tomorrow - so will make sure I take it in the morning.

 

Thanks again.

 

Arly x 

Butterfly318
Member

Re: Do you have to take Tamoxifen at same time?

Evening Arly

 

Sorry i have only just picked this up.  I took Tamoxifen for 2 years.  Initially i had Chemotherapy to shrink my tumour then surgery and only after 4 weeks following surgery could i start on the Tamoxifen.  I had Radiotherapy at the same time.   I did have hot flushes and painful joints etc.  These were worse when i took it at night so i then changed and took it in the morning and for about the first few hours i would be hot, particularly if i drank coffee.  I stopped the coffee / spicy food and the flushes reduced.

 

Before i started it my consultant did a blood test which indicated i was post menopausal, i was just 50,  but she wanted me to do 2 years on Tamoxifen (as this is bone sparing) and then 8 years on Letrazole.  I am now 2 years on Letrazole as well.  Everybody finds different side effects, some people don't seem to get any...  I do get very painful joints and tight tendons, i've got Osteoporosis and sadly my hair is softer and finer in texture.  However i try to look at the bigger picture.  This is 2017 and this year i am 5 years on from diagnosis.  I'm so grateful for all the treatment and yea some days i'm in pain, particularly when i wake up,  i swim early morning and find this really helpful.

 

Hopefully you will have started the Tamoxifen and starting Radiotherapy this week.  Hope this treatment goes well and your side effects are tolerable.

 

Take Care Butterfly x 

Arly
Member

Re: Do you have to take Tamoxifen at same time?

Hi  Butterfly

 

hope you had a good xmas and new year. Can I ask how long you've been taking Tamoxifen? Starting it tomorrow so any insight and hints and tips will be gratefully received! Not had any real menopausal symptoms yet so feel I'm going to be launched into it! Start Rads on Monday too!

 

Thanks! 

Butterfly318
Member

Re: Do you have to take Tamoxifen at same time?

Thankyou Dizzy Bee

 

Hope everybody has had a good Christmas and Best Wishes for a Peaceful, Healthy and Fun Filled 2017.

 

Butterfly xx

Dizzybee
Member

Re: Do you have to take Tamoxifen at same time?

And good luck to you too Butterfly, you sound as if the side effects are a bit of a struggle sometimes. It's tough when you know you need to stick with it and manage the effects, because you want to do everything you can. So I'm sending you a hug...

Butterfly318
Member

Re: Do you have to take Tamoxifen at same time?

Good luck Powdow.  Hope you remain well and free from side effects.

 

Take Care   Butterfly x

Powdow
Member

Re: Do you have to take Tamoxifen at same time?

Thanks Butterfly, I had lobular and it is usually grade 2, however the pathology report after my mastectomy had it as grade 1. I don't know what stage, but it was in 2 of my lymph nodes. I wasn't given any instructions on taking the tamoxifen. I guess I will try my hardest to stick to a set time. Thanks
Butterfly318
Member

Re: Do you have to take Tamoxifen at same time?

I suppose the problem for me is that i remain anxious about a recurrance or secondaries as i had grade 2 stage 3 invasive and in lymph nodes so do everything i can to prevent this, even though i know there are no guarantees so was told to take take it same time every day and i do......Sadly can't help the anxiety and worry...That's just me and i am aware that every drug has an optimum effectiveness and want to make sure my body has the drug regularly....   Take Care  Butterfly  x   

Powdow
Member

Re: Do you have to take Tamoxifen at same time?

Luckily I am not experiencing any side effects, perhaps the odd flush, so that doesn't matter with timing for me, but was worried re it doing its job properly if I don't stick to a regular pattern. I can't see why it would cause a real problem but wondered. If, like yesterday I forget to take it before I go out and don't take till night, I will tend to delay the next one a bit and haul it back. So I didn't take yesterday's till after 8 as we were out all day, so I'll take today's about 5, then tomorrow mid afternoon.
Butterfly318
Member

Re: Do you have to take Tamoxifen at same time?

My BC Nurse did tell me to take it at the same time and certainly experinece tells me this is the best way.  It is a hormone blocker and as such active for a certain number of hours after taking it.  I used to take it just before bed but the side effects, poor sleep, hot flush's, sickness etc prevented me getting good sleep.  I now take it early morning and the worst of the side effects are whilst i'm getting ready and up to lunch time....  If i forget and then take it later the side effects seem worse, especially if i drink coffee or eat anything spicy....

 

Take Care  Butterfly x     

Jill1998
Community Champion

Re: Do you have to take Tamoxifen at same time?

I think they advise you take it same time each day so you get into a routine and are less like to miss a dose.Dont think it is crucial for any other reason .
ann-m
Community Champion

Re: Do you have to take Tamoxifen at same time?

My understanding is, that as it is a hormone treatment, it should be taken at more or less the same time each day. I take mine after breakfast as I'm less likely to forget at that time, however, once I took a double dose by mistake & boy, did I know about it later! Since then, I write the day of the week on the blister pack so I know where I am.

ann x

Powdow
Member

Do you have to take Tamoxifen at same time?

Hi,

Just a thought. I usually take my Tamoxifen mid morning, sometimes this ends up being mid afternoon or on the odd occasion evening. Does this matter to its effectiveness? I wouldn't have thought so, but wondered if anyone was given strict instructions to take at same time each day.