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Tamoxifen June '17 starters

40 REPLIES 40
PeggyCat
Community Champion

Re: Tamoxifen June '17 starters

Hi Jane,

 

Welcome and don't feel you can't rant about things here. We all do that from time to time.

 

I'd just like to back up what Jo said. I too am taking Venlafaxine. Started it about three months ago after my flushes got considerably worse and more frequent. Like Jo, I still do have some flushes but they are far fewer in number and much less intense. I feel so much better and wish I'd gone to see my GP earlier. She was very sympathetic. An added bonus is that my mood has also improved. Earlier this year I was having a stressful time dealing with my mum's Alzheimer's. On top of the BC treatment it was just the last straw and I became very anxious. The Venlafaxine has treated both.

 

I hope you get some relief. Don't be afraid to ask for help as there are options out there.

 

Ruth xx

Hollis69
Member

Re: Tamoxifen June '17 starters

Jane I agree with Ann M, this is exactly the place to rant and vent and get some support when you cant make sense of it 🙂

You have as much support as you need and dont feel guilty for it as whilst some of us are ok, some like you are really not so its better to have the full picture.

sending hugs and give your BCN a call tomorrow for a chat to see if you can get some more help or options. xx

ann-m
Community Champion

Re: Tamoxifen June '17 starters

Jane, please do come & rant, that's what the forum is for.
You are going through a rough time & writing it down does get it out of the system, we all understand that.
sending hugs
ann x
Sue C
Community Champion

Re: Tamoxifen June '17 starters

Hi Jane

Please don't worry. You're clearly having an awful time and you have a right to express your feelings. Yes most people are fine, but you're obviously not. The oncologist will review this in a few weeks and I'm sure they will look for alternatives. In the meantime, give your bcn a call and see what they suggest. Also, try your gp, if not already done so. Like Jo said, there are anti represents that can help. I take amitriptyline, which helps with sleeping, anxiety and pain.

Best wishes and let us know how you get on.

Sue xx

jane888
Member

Re: Tamoxifen June '17 starters

I'' sorry to have scared anyone with my earlier rant... Most people don't have the effects that l have. I didn't think of others reading my most and i'm sorry.. I deleted it because i don't want my experience to put anyone off. Again i am sorry to anyone i have scared

 

Munchkin
Member

Re: Tamoxifen June '17 starters

Glad to hear this, I started mine just on Friday, hope side effects aren't too harsh.xxx

ann-m
Community Champion

Re: Tamoxifen June '17 starters

Sorry to hear you are having such a tough time Jane. I have nothing more to add than Jo & Hollis said below, other than wishing you the very best with it all xxx

I would just like to reassure others who maybe reading this who know that tamox is going to be part of their treatment plan, that most of us are fine on tamox or at least find any side effects manageable. Understandably, those having problems will report it, but those who are ok on it wont feel the need to.
I remember feeling very apprehensive about starting tamox when reading the experiences here, but as it turns out, I have been fine on it as many of us are.
ann x
Jobey68
Member

Re: Tamoxifen June '17 starters

Hi Jane, what an awful time your having of things, I just wanted to say I take an antidepressant called Venlafaxine along side Tamoxifen, I was put on it to help with the side effects and can honestly say I barely have any , it helps massively with flushes, I do get some but very infrequent and they are short lived! Initially I felt sick and dizzy when I started Tamoxifen but once the venlafaxine kicked in after a couple of weeks I felt so much better , been taking the combination for 2.5 years now and still going strong! 

As your feeling so low medication sounds like a good idea and can have the added bonus of helping your side effects, hope your feeling much better very soon Xx Jo 

Hollis69
Member

Re: Tamoxifen June '17 starters

Wow Jane888 you poor thing! you are going through a terrible time surely they can try other options as you are suffering really badly.

I was started on Tamoxifen before radiotherapy I am pre menopausal as 47 so I did them for a month and then I went onto Anastrasol which is a similar drug and I have Zoladex injections in conjunction with Anastrazole to stop reproduction of ovaries as I am doing hormone treatment instead of chemo as decided against the chemo.

So maybe ask them if Anastrasole or Zoladex would be an option instead of Tamoxifen as got to be worth a try just in case.

Im not sure of your situation re cancer but there are definitly other drugs like Anastrazole that does have side effects, but they may not affect you as badly.

sending you huge hugs 😞 x

jane888
Member

Re: Tamoxifen June '17 starters

Hi all,  i have deleted this post so not to upset anyone about to or just starting Tamoxifen. My reactions aren't general ones and i never meant to scare anyone with my post. I am sorry.

CONTENT DELETED BY ME SO NOT TO UPSET ANYONE.. I APOLOGIZE FOR STRESSING ANYONE OUT

 

 

 

ScoutB
Member

Re: Tamoxifen June '17 starters

Ive been taking Tamoxifen for 5 weeks and feeling pretty good apart from slight head pains, not a headache as such but random pains or sensations around my head, on and off for past four weeks. Not debilitating but wonder if others have anything like this?

Eggster
Member

Re: Tamoxifen June '17 starters

Hi welshlady66. I took my first one this morning,  so far so good,  although I was feeling sick this morning, but it doesn't seem to have made it worse!  My fibro tends to show itself as tiredness firstly with joint pain only when I am really tired.  I had a spinal fusion 7 years ago and I am very clumsy so have various old ankle injuries, so that doesn't help.  I don't take any meds for my fibro, unless I have a pain flare up, and then I reach for the tramadol. I was in the middle of appointments with the rheumatologist to try to work out the best treatment for my fibro when I was diagnosed,  so that is currently on the back burner!  The oncologist's concern was the radiotherapy might make thd tiredness even worse, at least starting the tamoxifen now I would have taken 8 weeks worth when I go back, so if I am going to have joint pain I will hopefully have an idea by then.

welshlady66
Member

Re: Tamoxifen June '17 starters

Hi eggster I started Tamoxifen just before my rads been on them nearly two months I have hot flushes and night sweats at the moment I too have fibro and have found If I take the tamoxifen around the same time I take my other medication I feel nauseous but if I take the tamoxifen at night I dont feel so nauseous so think that is just an overload of drugs as im on a few, the only other thing I have noticed is my pain is worse with the fibro and my joints especially the knees, feet, fingers wrists and hips hurt my doctor said its to do with the tamoxifen but I am sticking with it she just gave me tramadol for the joint pain its not too bad but still havent been taking them long x

Eggster
Member

Re: Tamoxifen June '17 starters

Hi, I didn't take it this morning only because I was merrily answer a post about mondor's disease yesterday,  I currently have a cord after my tidy up op, then it dawned on me that I didn't mention it in my oncology meeting yesterday and he did mention that one of the potential side effects is blood clots. So I called my bc nurse to check with her whether I should wait for it to go before I start,  she called back when I was driving to work,  I asked her to call back, and she didn't.  I will try again tomorrow! 

ann-m
Community Champion

Re: Tamoxifen June '17 starters

Hi Eggster,
Just do it & see how you go. I remember feeling as you do now & thinking after a couple of hours, do I feel anything yet? & after a day?, a week? Well no, as it turned out!
As ever when going through this, the prospect is generally worse than the reality, it may well all be just fine.
If not, then you'll deal with it.
ann x
Eggster
Member

Re: Tamoxifen June '17 starters

Hi. Just reading the thread as I had my first oncology appointment today and came home with a box of tamoxifen! So just at the worrying about taking the first one tomorrow morning phase! He wants me to start before rads, and will look again when I go back in sept after the rads just incase I have tok many side effects as I also have fibromyalgia.  The nurse recommended acupuncture to deal with hot flushes. 

Hollis69
Member

Re: Tamoxifen June '17 starters

Hi Amanda, I have heard the magnets are good but if you look on Amazon and type in ladycare magnet it also brings up magnetic bracelets that are slightly cheaper with good reviews so maybe worth trying them. 😊X
amanda63
Member

Re: Tamoxifen June '17 starters

Hello everyone,

How are you all doing?  I have been taking Tamoxifen for two weeks now.  The worst side effect is the hot flushes, and the warm weather isn't helping with those!  Apart from that I have occasional nausea and a feeling of lightheadedness.

Two women at my breast cancer support group today were saying that the Ladycare magnet is working for them.  Have any of you tried it, or know anyone who has?  The magnet is quite expensive and I'm not sure whether to invest in one or not.

 

Hugs to all,

Amanda

Hollis69
Member

Re: Tamoxifen June '17 starters

I'm 5 days in and feel a bit tired but that's about it. Although I do feel a bit more bolshy as I'm situations I would normally hold my tongue....I now don't ha ha x
Den64
Member

Re: Tamoxifen June '17 starters

Hi all

Now been taking Tamoxifen for 9 days and apart from hot flushes and a little tired haven't had any side effets yet. How about everyone else?

 

xx

MandR
Member

Re: Tamoxifen June '17 starters

Hi, how are you all doing? Hot sweats have abated a bit, just feel shattered and occasionally a bit out of it. Otherwise so far,so good. Hope everyone is OK xx
RunningMum13
Member

Re: Tamoxifen June '17 starters

Hi ladies,

 

I have been taking Tamoxifen since January and haven't experienced any side effects other than night sweats, I'm having a course of acupuncture for this and so far it seems like a miracle cure and I've only had 2 sessions to date!

 

I also take in the morning, marking the strips with the day of the week. I put the box back in my bedside drawer once I've taken, then get it out as I go to bed. Seems to work for me.

 

Oh, just remembered I did have a slight change to my vision so needed new glasses, this can be a side effect so I made sure I mentioned my medication to my optician.

 

Love & light Donna.x

Hollis69
Member

Re: Tamoxifen June '17 starters

Hi all,

So after my weekend of fun and copius amounts of alcahol with my freinds down, I took my first pill on Monday night as decided I may sleep through any side effects.

I was so anxious I layed there waiting for a stroke, or to swell up and get clots and die during the night 😉

luckily I survived the night and woke up alive and fine, apart from being knackered!

I seem to be ok but had horrendous heartburn yesterday so will see if that happens again today.

Hope you are all doing well x x 

 

fitzy5
Member

Re: Tamoxifen June '17 starters

Hi,I take mine before bed as thought I would sleep the side effects off.I did a similar post and it was equal results for morning and night 

   Fitzy5

Meri
Member

Re: Tamoxifen June '17 starters

Hi all

 

I started Tanoxifen couple months ago , was not so good but here few tips that helped if you get side effects.

 

Breast care nurse sugests taking half morning and night always after food  this helped so much to even out reactions.

 

I am 61 so post menopausal but did still have few hot flushes every day, they got suoer charged on Tam so I thought I would try out the LadyCare magnet and was totally surprised how much it helped.

 

I was getting nasty surges of dread and anxiety and the magent stopped all that too.

 

Some think its a placebo effect, so ruddy what! it worked!

 

I did get lot of nausea and indegestion, also sore mouth and lady bits. Aparently Tamixifen blocks estrogen to breasts but can increase to other parts of body, so can change ph of vagina, leading to thrush or irratation.

 

Wish I was warned about this. It seemed to get worse linger I was on drug.

 

Nausea and soreness got so bad by seventn week I got quite ill so told to have a break till after Radiotherapy settles and my body heals. But then I face Tamixifen or another hormone blocker in few weeks.

 

When faced wth side effects, if any, as so many seem to be ok, its worth checking how much benefit you will get from drug by using the NHS PREDICT online tool.

 

It tells you five year and ten year increase in life expectancy if on drug, you answer few questions re your cancer so its personalised.

 

http://predict.nhs.uk/

 

I am releved to be off drug and am considering if its worth it or not but will discuss with oncologist in few weeks.

I hope all of you, like many, have no or minor side effects.

 

🙂

Den64
Member

Re: Tamoxifen June '17 starters

Hi Girls

 

I have started taking mine at night, this is only because I have Ulcerative Colitis aswell and have meds for that and didnt want to take my meds at the same time (they dont say you can't but just think it would be like drug overload lol) so it will intereting to see if there is any difference in the time of day and taking it. I have only done day 2 at the moment but havent had any side effects as yet, the only one i wouldn't mind is the weight loss but knowing my luck at the moment i'm likely to get the weight gain side effect Smiley LOL

 

Keep strong Girls xx

amanda63
Member

Re: Tamoxifen June '17 starters

Hello everyone,

So far so good with the Tamoxifen, although I realise it is very early days!  If anything, I have felt a bit nauseous at times and I am having (very!) hot flushes early in the night.

 

Denise - I am taking my tablet in the morning after breakfast.  At the moment I'm keeping the tablets next to the tea bags so I don't forget!

 

Love to all,

Amanda

ann-m
Community Champion

Re: Tamoxifen June '17 starters

Hi Den,
I decided to take tamox at the best time for me, when I would be least likely to forget it, which for me, was after my toast in the morning.
I then felt I would then have the option to change the timimg if I needed to later. As it turned out, this has worked out fine for me & I have not needed to change it.
ann x
Den64
Member

Re: Tamoxifen June '17 starters

Hi Ladies

 

I am getting my prescription today for Tamoxifen, not sure if to take it at night or on the morning so any advice on the best time of day would be brill.

Good luck to everyone else who is starting on it 

Denise xx

ann-m
Community Champion

Re: Tamoxifen June '17 starters

Hi Hollis,
Enjoy a glass of wine or two, you deserve it, I do - but not to excess of course!
ann x
KarenMc20
Member

Re: Tamoxifen June '17 starters

Hi Amanda. I started my tamoxifen early June and was so upset on the first day, but...I can't say I have experienced side effects other than an upset tummy. I've been awaiting hot flushes with dread but nothing so far! I'm beginning to get the hang of this thing - the treatments have not been as bad as I built them up in my head to be!!
Good luck and take care x
Hollis69
Member

Re: Tamoxifen June '17 starters

Oh great MandR, another newbie to compare notes with, thats really reaasuring you are ok so far 🙂

MandR
Member

Re: Tamoxifen June '17 starters

Amanda I started taking mine last week. I felt the same, so apprehensive. But I'm a week in and feel OK. Not sure if I've been having some hot flushes because of the tablets, or just because it's been soooo hot and also got my period today. I take mine in the evening and so far, so good. Xx
Hollis69
Member

Re: Tamoxifen June '17 starters

Woop woop amanda63 well done 🙂

Ok so I am freaking out about starting this week as have freinds driving down to see me and have a few drinks this weekend.

I am worried about mixing alchahol so going to chat to onchology first, I know seems silly but I have been looking forward to some support from my close freinds and they live far away so is really important to spend some quality time with them and need a blowout! 

keep me posted on how you are 🙂

amanda63
Member

Re: Tamoxifen June '17 starters

Good morning all,

Thank you so much for your comments and advice.  I have taken the first tablet this morning after breakfast (and another sleepless night - not sure if it's due to the hot weather or the cancer treatment!).

 

Good luck Hollis69 - let me know how you get on!

 

Love to all,

Amanda

ladybowler
Community Champion

Re: Tamoxifen June '17 starters

Ladies

 

I just wanted to echo ann's comments, I have been on tamoxifen for 7 months now, apart from a lovely hot flush in the morning after I take the tablet and a bit of constipation which increased fibre intake has sorted I have been fine.  Like everything you will always hear the bad things but at the end of the day taking this tablet for 5 years is a small price to pay to keep me safe.

 

Helena xxx

Hollis69
Member

Re: Tamoxifen June '17 starters

Thank you Ann-m,

I have taken the decision to not do chemo today so feeling a bit anxious, it was borderline high on oncotype but Im so well in myself, I felt I was going to make myself ill and didnt sit right with me, so they have suggested Tamoxifen and Letrozole injections as pre menopausal, but yes did the reading up on the hormone drugs and wanted to change my mind ha ha

ann-m
Community Champion

Re: Tamoxifen June '17 starters

Hi Hollis,

Try to ignore the horror stories, I wish I had, see my post below. 

Yes, as with any medication, some of us react to it, some find it manageable & many of us are fine on it. 

After all, it is doing an important job!

ann x

 

ann-m
Community Champion

Re: Tamoxifen June '17 starters

Hi Amanda,

I felt exactly the same as you a year ago when I first started tamoxifen, but as it turns out, I've been fine on it. Many of us are, so see how you go, it may well be all ok. Obviously, those with problems understandably will report it, so what you see here is not representative of all of us. 

The list of side effects does look daunting, but it doesn't mean you'll get any or all of them & if you do, there are things that can help, so If it occurs, then deal with then. 

I'm on it for 10 years & now it's part of my daily routine.

Once I did take a double dose by mistake & boy, did I know about it later! so I now mark the blister pack with the days of the week with an indelible pen. 

After overthinking it a lot before I started, I decided to start with taking it after breakfast as I felt I would be less likely to forget it at that time. For me, it also left me with the option of changing the time if it helped with any side effects, but this has not been necessary. 

Wishing you well with it. 

ann x

Hollis69
Member

Re: Tamoxifen June '17 starters

Yes me!

I am also supposed to start tomorrow and reading horror stories on side effects so a bit worried now 😞

amanda63
Member

Tamoxifen June '17 starters

Are there any other women out there who are starting to take Tamoxifen this month?  I am due to take my first tablet tomorrow and I'm feeling slightly apprehensive about the side effects, and daunted about taking the drug for 10 years.

Any advice / warnings / reassurance gratefully received!

 

 

Amanda