Starting Tamoxifen in 2 days, nervous!!!!!

Hi ladies,

I am due to start taking Tamoxifen on Thurs and am getting quite nervous about it to be honest. What I’m wondering is how long is it likely to be before I start experiencing side effects? I am going to take it in the evening and am thinking maybe the hot sweats will start on Thurs night??

Obviously I know everyone is different, but I am curious as to how long most ladies have gone before they started having the dreaded side effects. Your input would be greatly appreciated as ever! (I’m 35 by the way),

Many thanks in anticipation,

Take care all,

Kelly
-x-

Hi Kelly,

I started tamoxifen a couple of weeks ago now. Doing ok so far. Had been experiencing mild hot flushes already from the zoladex, they haven’t got worst.

So, I’m pretty much the same as before. No other side-effects. Well, I am experiencing vaginal dryness but had this already too, again because of the zoladex.

I too pop the wee pill in the eveining. I am 28 by the way. Hope rads is going ok for you Kelly. Absolutely no trouble for me so far. O and I hope you sell your house or have you already?

All my love,

Teacup x

Hi Kelly
Relax - You may not get any side effects at all - even night sweats!

Unfortunately I’m 54 and came off 11 years of HRT slowly between December and June - the ‘unfortunately’ is because I started having night sweats (Tropical moments) as a result of coming off HRT - now I don’t know if its the Tamoxifen or withdrawal!

The thing to do is not to think about it
Good Luck
Maddy xxxx

Hi Kelly

Try to relax girl ! you may get no side effects at all, as I haven’t (yet). Am feeling great at the mo, so try not to worry ! You are obviously in need of some serious retail therapy and as christmas is just around the corner I think that shopping is the best prescription at the moment. LOL
Love
Diane x

Hiya Kelly - you just cant catch me up - can you??? LOL

I just finished my second packet this morning - 2 months worth - how fast has that gone???

Must say that I am having bad hot flushes and night sweats - I had a chillow pillow last week but i need time to get used to it as I just cant get comfy in bed but I think the chillow will work - its so coooool. I’ve noticed they are worse with alcohol - OMG what a dilema - less hot flushes or alcohol!!!

also been following slimming world diet and cant lose much at all - i got quite depressed when after a fantastic week i actually put on 1 pound but then thought of what I had been through and realised that theres more to life than losing weight (i just have to remind myself on that one all the time!!!)

the other thing I have noticed is very aching joints especially my hips and legs - takes ages to get up - feel like i’m 90 but it only lasts for a few minutes until I lossen up

other than that everything is fine. I take mine in the morning and have no problem with that

good luck XXXX

Oh thanks ladies,

I feel better already, you’re all awesome!

Maddy - I will takeyour advice and will try not to panic! Will try my best to not even think about side effects when I take my first tab on Thurs. I’ll imagine its just the contraceptive pill or something!

Teacup - Starting rads on Mon so something else for me to worry about!!! LOL! I’m glad they are going ok for you so far. Many thanks for the best wishes re: selling our house. My nerves are in bits, LOL!! Just got off the phone from the est agent, someone viewed today and has put in an offer!!! Its a bit of a cheeky one as we suspected but hopefully there’s plenty of room for negotiation as he was v.v.keen and loved the house apparently.Keeping everything crossed that we can close the deal asap, it would be like a dream come true.

Diane - I’m glad you’re feeling great at the mo, hope I fare as well! Would love some retail therapy but buying a new house at the mo and don’t think OH would be too amused!! LOL! Nice idea though,

Thanks again all, take care,

Kelly
-x-

I have been taking Tamoxifen for 12 days now. I feel great apart from the odd hot flush but nothing too bad. I put on weight last week but probably because I wentouteating alot. This week I have taken more care and have now lost weight so I am rather pleased. I think it is just best to take it and see. I would rather lengthen my odds if I can.

Love Madeline

Hi

Just wanted to say I’ve been taking Tamoxifen since August and haven’t had any noticable side affects. I take mine in the morning with food as I read somewhere that it is helpful.

take care
Sue

Hi Julie (JulsRis)

I had previously experienced the joys of going ‘cold turkey’ from HRT for three months when my blood pressure went up - I went straight back on as soon as possible because the hot sweats, mood changes, sleepless nights etc etc etc were totally unbearable.

I eventuallycame off HRT as a result of my age - my doctor advised that it would be best after 11 years - had I just started taking HRT at the age of 54 I could have stayed on it for ever! or until the BC Saga began!

The doctor gave me a final two month prescription in December and suggested taking the tablets every other day to wean off - I started every other day then extended the gaps between them - I made two months supply last until June ! Apart from the occasional hot sweat at night I was doing fine - now begins the whole Tamoxifen saga - apart from a few more ‘tropical moments’ at night I’m doing fine.

I can’t really help you extend your time limit - the every other day strategy for the first week may not get you very far but it’s definitely worth staggering the dose to get ready for withdrawal.

Good Luck
Maddy xxxx

keeping everything crossed for you Kelly re the house, hope all goes well !!!

Diane x

I have to say I’m amazed. I’ve got a friend currently on Tamoxofen who is always saying how tired she is (and truly she looks exhausted and drained). HOWEVER, I took Tamoxofen for two years (then I was post-menopausal and was switched to Arimadex) and had absolutely no side effect whatsoever. Less than taking an aspirin. I’m surprised to hear that people have side effects from it because my experience was so easy. I have a history of heart problems (repeated incidents of congestive heart failure) and my cardiologist resisted letting me take it and insisted that I have a stress test before taking it and heart ultrasounds every six weeks while taking it. Thankfully there were never any issues that came up. I will say though, maybe because I take coumedin (a blood thinner) and some other heart meds my experience was a bit different than others.

But…have no fear. Taking Tamoxofen greatly reduces the risk of recurrence. One bout with cancer, chemo and radiation is plenty, the less likelihood of having to do that all again, the better. :slight_smile:

Hi , thanks every one for comments re tamox and hrt, all helpful, good luck everyone and grt to meet you ,

juliexxxxx

Hiya…i started tamoxifen in august…had the occasional hot flush…but the chemo flushes were worse in my opinion. I started tamoxifen at the same time as rads so couldnt tell you if the tiredness was one or the other if im honest id say it was the rads that wore me out.
I had to have a hysterectomy a few weeks ago due to an obnoxiously we cant tell what it is cyst…results back yesterday as negative…so got thrown into the menopause at the deep end put it that way.
Your body will adjust to the tamoxifen, just takes a bit of time. I take mine in the morning, as otherwise id forget.i just think of it as my pill if that makes sense, well one replaced the other without the benefits lol. Try not to think about the side effects as your brain can play tricks on you at times if that makes sense. Drink plenty of water and take it a day at at time.

Hi Kelly
I started taking Tamoxifen on 10th November (I take mine in the evening after dinner). I haven’t had any side effects so far, tiredness I think is from travelling for rads (140 mile round trip!). I also managed to get my doctor to prescribe Nolvadex D without any questions what so ever!

Best wishes.

Carol

Hello kelly.

I am starting next week…need another weeks recovery before I start! I am nervous as well because at the moment I feel sooo good and I don’t want to feel bad ever again.

Good luck and thinking of you xxx

Boo xxx

I was on Tamoxifen for 10 years and the only side effects I had were the hot flushes (and a bit of dryness you know where!!) but apart from that I didn’t put on weight which a lot of ladies in our group say have happened.

I think my eyesight was slightly made worse but that may be due to age as well!!! Unfortunately we don’t have the normal markers that most women have in getting a bit older.

Pinkdove
x

Hi RobinM,
New to this site and have been looking for posts about taking Arimadex with pre-existing heart condition. Since DX and mastectomy 2yrs ago I have been on no hormonal therapy to prevent recurrence because the BC consultant took the view that Arimadex (previously suggested at DX ) had cardiac side effects that could worsen my heart condition ( major surgery many years ago with ongoing medication and surgeries) but told they wouldn’t stop me if I really wanted to take the risk ! Basically I was left to make the decision myself with very little information. (also told Tamoxifen wouldn’t be suitable due to previous pulmonary embolism ) So here I am, having to get my cardiac consultants to liase with oncology whilst I continue to be terrified that I am not giving myself the best chance of avoiding recurrence and nobody seems to give me the information I need to have a meaningful discussion with the BC consultants. I want to see my son growing into adulthood and beyond. You are the first person I have come across dealing with a similar situation so I would be so grateful for any advice you have to offer, I’m due another surgery soon and dealing with the fear of recurrence as well is really depressing.
Thanks

Hi Kelly

I was sooooo nervous before taking tamoxifen but ended up with almost no side effects - just occasional and totally manageable pain in my knees (at least I think that is due to Tamoxifen). I hope it will be the same for you - without the pain, of course. I take mine twice daily, morning after breakfast and evening. I am on Nolvadex but will be switching to generic next month, I’m curious to see if there will be a difference.

Good luck for tomorrow,
xx J

Hi Kelly,

I am onto my second pack of Tamoxifen. When I started taking it I was also very nervous after what I had read about side effects. I must say for the first couple of weeks I was waking up about three times a night with hot sweats and having to fling off the covers. I also seemed to get a coldness all through my body whilst sitting watching television during the evening. One extreme to the other, either hot sweats or a cold feeling. I now don’t seem to get any adverse effects on the Tamoxifen. Maybe my body was just getting used to it and thankfully it seems to have settled down now. I get a hot flush just very occasionally now. I take mine after my evening meal with a whole glass of water. Hope you have no effects from taking the Tamoxifen.

Now into third day of rads and hoping to get through that without any trouble.

Sandra

Hi Kelly. Have been on Tamoxifen for about 5 months now. Only the last 3 weeks changed to Nolvadex. Since the Tamoxifen seems to give me terrible joint and muscle aches.
Also plenty of hot flushes. I hope the Novadex will make a diff but have not noticed anything yet.
It could be the combo with Zoladex with me ( I am 37 now). That suppresses ovary activity. So aches and pains, flushes,Dry top and bottom, some weightgain.

The onc suggested that is the sideeffects are decreasing the quality of life some people would consider not taking them.

This is the point I want to make. For me the side effects, I guess, are moderate. But every time I take my tablet I think it is GOOD. I would take a double dose if I needed too. The side effects are a bit less now then they were in the beginning so maybe they will reduce even more over a longer time.
I hope I have made sense.
Do not be affraid please. The tablets will help you with beating the cancer and keeping it at bay.

take care.
Dutchy