Tamoxifen questions

I have been on it for almost a year now and my main side effect has been hot flushes also. I am 47 years old. My GP recommended taking Evening Primrose oil tablets to help with breast cysts in my other breast. When I told my Oncologist this she said they use it to reduce side effects like hot flushes as well. So I have been taking two a day and feel it helps with the severity of the flushes, good luck Michelle ??

And I forgot to mention... I have put on a bit of weight... but hey... I'm alive xx

Hi Angie

I sat on the prescription until I saw my Oncologist and he asked how I was going with the Tamoxifen... I said I was too scared to take it because of the side effects.... He said "My chance of recurrence was more likely than the chance of the worst side effects ever happening".... so I started taking them.  Bottom line... the list are possibilities of what might happen... we won't necessarily get them all.  We do what we have to do  : )  and be grateful that the medication is there for us.

My last appointment with my oncologist marked my five years since the end of chemo and radiation.  I was 45 at the time and pre menopausal.  He has now put me on an additional five years of Tamoxifen.

I already had the aches from chemo (which have now subsided);

The sweats, that we can do nothing about except eat lots of zupa dupers day and night, summer and winter; sleep with the fan on and kick the sheets and blankets on and off all night (like Michelle above); and have the air con in the car at 18 degrees even in winter.  I get around in a singlet top whilst everyone else is rugged up with scarves and jumpers :)

To be honest, I have had lots going on in my life (as we all do) ... but my response has been more anxious, stressed and sad than I would have reacted in the past....  I have now taken up Tai Chi which I highly recommend and would suggest that you get into healthy relaxation habits now if you can that will help you more and more as time goes on.

I had friends that were closer to menopause that had more problems than I did in the beginning and they were switched to arimidex and it seemed to suit them better.  

I have always taken mine at night, however recently I started taking the in the morning and think that I am sleeping better.  ... that is for me anyway... as said above, we all react slightly differently.  I am sure you will find your way  :)

You will be fine  :)  

Sue

Hi Angie,

I have been on Tamoxifen since November 2015. I admit I was hesitant to take it but if it keeps my right breast safe from cancer then it will be worth taking for the next 5 years I guess. I lost my left breast but luckily no chemo or radiation (I chose mastectomy instead of) and then Tamoxifen as I am 49 and Peri-menopausal. 

As I write this I am sweating...one of my many hot flushes that seem to come way too often, I would say hourly. The heat feels like I am experiencing a fever, my face goes warm and I feel like I am glowing then I can feel the sweat run down my back and got to say It distresses me but what can I do about it? My oncologist offers nothing but to say... "well that is one of the side effects" at least now it is the only one I am aware of but at the beginning I had aches and pains and nausea, headaches. My period still comes but it is irregular and heavy if only for a couple of days.I do get hot and cold in bed and this is not helpful in winter...fearful of catching a chill! I kick the doona off when I am hot and then pulling it back up to get warm when I am feeling cold. So I don't sleep very well unfortunately. 

I take mine in the morning straight after breakfast with my other tablets so I don't forget. 

I do believe my body is more used to taking it now even though the lack of oestrogen has effected my hair and skin - made dryer. Winter does not help that either so not a big deal.

Is true everyone seems to react differently but there are similarities.. the hot flushes seem to come for everyone and are of varying severity.

Wishing you all the best on your journey and minimal side effects also, Kind regards  Michelle 

Hi Angie

I'm peri-menopausal and have been on Tamoxifen since February.

My breast surgeon said that usually Tamoxifen side effects are greatest in the early stages of taking it.

The only symptoms I seem to have are hot flushes  (which I was starting to have anyways) - which usually come at night and seem to go from my ankles to my neck! Other than that, it's been pretty plain sailing....I am doing lots of exercise (pilates, walking and running on treadmill) to try and keep joints flexible and abate any of the weight-gain side effects.

My GP will get me to have an ultrasound within 12 months to check on the lining of the uterus, just as a check.

I take mine in the morning.

Nikki

Hi

 I have been on it just over 2 months. I'm post menopause but cause of bone density on tomoxifan. I have had more headaches than usual, hot flushes are back and nausea on and off, joint pain I had before I started. I take mine of a night after tea (seems to help with the nausea). The only thing causing me problems is the nausea, some times it can last 4 or 5 hours but that's not often. Think it's worth it and I have also been told the longer you on it the less it causes you problems. Take care

I was told to take mine every morning when I have breakfast. I had a slight bit of nausea and lost a bit of weight at the start but now I am ok. I had hot flushes for months before the Tamoxifen but they have intensified to every hour now. I have taken 2 months worth so far and my oncologist assures me after about 3 months the hot flushes should start to settle down. Sitting on the veranda, sweaty with a fan on and coat off during winter every hour is doing my head in atm.

Hi Angie,

I was on Tamoxifen for 2 years. I took it at night straight after dinner. I had very few side effects. Only occasional hot flushes. When I first took it I was a bit light headed, but this lasted a few days. I am post menopausal. 

Ang

Hi I was on tamoxifen for about 6-8 months. I had hot flushes and found I was very anxious. At the time wasn't sure if it was tamoxifen or getting over active treatment ( chemo, mastectomy and reconstruction) Last visit with oncologist we discussed Aeimidex, so I had blood test and I'm post menopausal so I started on Arimidex. I still have hot flushes and joint pain but in myself I feel better. Our bodies react so different what is right for one is not always right for others.

When taking tamoxifen I was taking it at breakfast but then changed to taking at night. Good luck I hope this helps

Hi Angie ??

I was terrified of taking it ?? The packet lay untouched, like it was radioactive by my bed for a good 10 days before I worked up the courage to take one ! 

When I did, surprisingly, the world didn't end !

Nothing happened & it still hasn't ??

As I was post menopausal ( I can't have letrozole because of my poor bone density ) I was having a few hot flashes anyhow but they haven't increased in either severity or frequency. 

No joint/bone pain.

I take it at night before I go to sleep & have been on it for a few months.

Good luck to you as well, wishing you all the best ??