Anastrozole - how did you get on with it?

[BlackSwan]

poemsgalore, why don't you just ask your GP to write you up for some Calcichew if your onc is slow to get around to it - I've been taking them for a couple of years.

I like the lemon flavoured ones.

Two a day - yum yum!

[poemsgalore]

I've been on it 4 weeks now and still no SEs. In spite of the fact I have Rheumatoid Arthritis, I don't have any aching joints. My Dexa bone scan also showed some thinning of my bones - I'm 62. High risk due to RA, also my mum and gran both had osteoporosis. I have been taking a multi vitamin (including D) but my onco says that won't be enough, I need to go on high strength calcium/vit D tablets. I'm still waiting for them!!

[BlackSwan]

I started Anastrazole a few days go. I haven't noticed anything yet. When do the side effects start?

[kiwijan]

Hi all - I've been on Anastrazole for about 9 months now after MX and chemo. I had the DEXA bone scan and they saw slight thinning of the bone in one hip but reckoned that could be just down to age anyway (I'm 58). But GP also prescribed Calci-D tablets - 2x twice daily. You can ask your doctor to prescribe it - presumably you have an NHS prescription-exempt card (all us "had cancer" people can get one) - so it won't cost anything. I sometimes get achey wrists and knees but manageable - it gets better as the day goes on. Definitely no hot flushes - just the norm in this hot weather! Some days I do lack energy but I am putting that down to just time getting over the effects of chemo - they say it can take up to 2 years before you are back to your normal energy levels. So in my experience, no really bad side effects - good luck to everyone!
Jan. x

[dragonladybh3]

Hi, . Had radiotherapy but no chemo and did not have any side effects until i finished radiotherapy - now have some chest pains which are apparently an after effect of the rads and sharp breast and arm pains which last for minutes only. I have been on anastrozole for 4 months with the main SE being night sweats - has anyone tried the chill pillows? do they work?
Also take the calcium + vit d tablets twice a day.
Some days I feel like a feel like a wind up toy that has run down! Too much effort to do anything. Had not put it down to a side effect of the hormone tablets but reading above posts I suspect it is. I asked my GP [who is also a friend]about exercise etc and was told I was overdoing it already and no way was i to start at the gym [the gp's can make referrals] Being basically lazy and retired I was surprised he thought I was overdoing it, but even driving from A to B and attending meetings etc can tire you out.
Yes, people do say how well I look - but when you're not doing anything stressful or strenuous it can be frustrating when you feel feeble inside

[MINI_20]

Hi have not been on for some time,and came on today looking for help.but first janisM,i had breast cancer first time at 48 tamoxfen for 5 yrs finished,and 1 yr later i got it in the other breast, and i have been takeing Anastrozole for 9 months lots of side efect. but when i have done my 5 yrs,i want to stay on something,i think if i had been on something i would not have got it again,this is my worry has anyone had a small bleed on Anastrozole,i went to see my GP and haveing a scan tomorrow,realy fast which is good but worrid still,it just feels like i am haveing a period, pain in tummy and back.

[Guest user]

I'm new to the forum, but complete my 5 years on Anastrozole on 28 August 2013. Have had many of the side effects others mention - weight problems, lethargy, depression, aching joints and a feeling of utter exhaustion, even when I've had a good nights sleep.
Ive been looking forward to coming of Anastrozole so much, but in light of the decision to give preventative drugs to women in high risk groups of getting breast cancer, should I be asking to continue taking it?
Would welcome thoughts from anyone, very confused now and worried that this will be my life from now on, I'm only 59!

[poemsgalore]

Well, I've been taking it now for almost two weeks, and as yet have no SEs. The one I was dreading was hot flushes as I never had those while going through the menopause itself. I haven't had any unusual aches and pains. I have an appointment with my rheumatologist next month. If I still haven't started getting any pains, I'm hoping she WON'T put me back on Methotrexate injections. The idea of that really bugs me. After all, I was injecting it for about 5 years before chemo, then injecting the Filgastrim for 7 days in every cycle. Every day without pain is a bonus, if it comes back I'll just have to deal with it.
Katy, I was on anti inflammatory drugs for 13 years, but had to stop using them due to internal bleeding. In spite of the fact that I was taking Cimetidene to protect my stomach. Then I was on Prednislone for 6 months, which was truly awful!! so they put me on Methotrexate tablets which made me have nausea, dizzy spells and blackouts. Then they changed it to 25mls injections once a week. But I know what you mean about folk saying how well you look. As you say, if only they knew!!
Poemsgalore xx

[Katykookabura]

Oh dear Clare, that is a dreary prospect!. I thought five years seemed a long time. I have brilliant GP who managed my pain control over the past two years as I have had both my knees replaced as well as breast cancer! . I managed to come off most drugs then got the diagnosis for cancer just before Christmas. I take a very small amount of anti inflammatory drug twice a day which i am sure is helping with the extra pain and stiffness from Anastrozole. Of course long term it is not good to take anti inflammatory tablets long term but GP is monitoring this. Try talking to GP about it. I did pain management course years ago and that helped as it teaches coping mechanisms.
I ty to start my day later or get up earlier if I am going anywhere as once I get moving it gets better. I am 62 and feel 82 somedays!!. It has been a tough two years but determined to get back to some fitness as I could not even walk three a years ago. It is working out a regime for yourself and try sticking to it. Means I have to be selfish at times and say NO to some people as always been a busy person in my community. Trouble is with our aches and pains and the stress from having had cancer ( or still treating it) most of the ladies and gents on the site have said they look well but get fed up with people saying how well they look especially when they are feeling rough or in pain and that is just how I feel. I usually grit my teeth put on a smile and think,if only you knew!!. Take care, Katy.

[butterflyfreed]

Hi all
I have been on anastrozole for about six weeks after taking tamoxifen for about two yeara. I must say my mood has changed and I have been quite depressed at times but assumed that was down to the stress of the last few years.
I also have very low energy. I love going to the gym and working out but have found this hard to do. My legs are stiff especially after I have been sitting for a while and its hard to get going when I first stand up. And my knees and ankles feel stiff at times.
Am thinking of going to docs to see if he has any suggestions.
Any help would be appreciated as my oncologist says I may be taking this for ten years!!
Clare x

[ginette65]

thanks zibzab
i
made the decision not to take anastrazole for various reasons. apart from the cancer i was 100%healthy, no arthritis,my bone scan was amazing (i was told!) no aches and pains,so i decided i didnt want all these terrible side effects, taking into account my age. if i was 20 years younger i may have thought different. also i think its such an unatural thing to deprive the body of oestrogen.these are just my thoughts
ginette65

[zibzab]

ginette65
If it is yours decision then must be ok. I think for women after 60 - ties is not too bad without hormone theraphy. I know women who refused to surgery and chemo, and she is having hormone theraphy only. In one year her lump shrank from 5 cm to 0,5 cm. Although she is very old, butTamoxifen anyway helps reduce her tumor. She is 80 years.

[Trisha_51]

Hi ladies, I've been on Anastrozole for 6 months and I too find my joints can be rather stiff first thing in the morning but it soon wears off. I did already have arthritis in my left knee but it doesn't seem to have made it any worse. Like Ginger Laces I also take glucosamine and omega 3 and have done for years. I know weight gain can be a side effect but I am desparate to shift some of mine and have been following the 5:2 Diet for the last 6 weeks, managing to lose between 1/2 to 1 pound per week, hopefully this will continue but if not I may have to resort to 3 fasting days per week instead of just the 2. The hot flushes don't seem to be as bad now as they were initially but alcohol and spicy foods definitely make them worse. The SE's are a bit of a pain but I feel the benefits of the medication far outweigh the difficulties they may cause. Best wishes to you all, Pat

[GingerLaces]

Hi ladies it will be 2 years in August for me taking Arimidex. At first the stiffness in feet and legs was so bad that I could hardly stand so I started taking glucosamine. I was so much better and tried stopping the glucosamine but after two weeks had to go back on it as realisEd I needed it. I am still stiff but so much better. I also had trigger thumbs straight away and had my right hand operated on whilst a steroid injection was enough on my left thumb. Well at least for now! I do take Vitamin D prescribed by my GP as my levels were so low and fatigue was awful. i also had Dexa and have a hip which has degenerative wear so need to keep eye on it. I work fulltime and get very tired and still suffer with some stiffness but despite all the problems will carry on with it. Weight is still a problem as put on 3 stone during chemo and it is not shifting 😞 have been told by onc that it is hard to lose weight on Arimidex and causes weight gain. Will persevere with taking it. Hope this is helpful as we are all different!!!!

[Guest user]

I feel more depressed the more i read. have been upbeat all through diagnosis and treatment so far but this is just the pits.......

[Katykookabura]

Hi everyone, I have been on Anastrozole for four months now and like some of you say I too have more achy joints as I have arthritis anyway and take small amount of prescribed anti inflammatory medication. It's worse in the morning and the early morning getting up etc routine is more painful and takes longer, but once I get going it gets better. The hot flushes are the worse as I just start pouring sweat and it is embarrassing especially in the company of others. I have small battery fans everywhere as we'll as hand fans and of course during this heat electric fans to use. We put ceiling funds in our bedrooms a few years ago and they are really being used now!
Also have more headaches but they seem to be getting less now. My Oncologist says she would see how I got on on Anastrozole and if i could not tolerate it she would put me on Tamoxifen, but Anastrozole was the better drug out of the two for my cancer. I have a rare one Mucinous carcinoma which was a primary but was 35 mms. I shall try and stick to it but it is daunting as some of you say that it has to be taken for five years.
Just to add to my problems I have had some reaction to radiotherapy that has affected my lungs and I have just started a ten day high dose of steroids !! Anyway perhaps that will calm the achy joints down. You win some you lose some! Thank goodness at least it is not cold in the UK as well which makes the arthritis worse!! Katy.

[Kirstie]

Hi Everyone, I have been on anastrozole for 6months almost now. My legs are aching and stiff every morning, but loosen up as the day goes on and my wrists and thumb area is painful, some days I have to wear wrist supports! I am thinking whether to ring the breast nurse and see if I can change medi a friend who is further on than me in this journey says she had the same problems and she was allowed to come off the anastrozole for a month she then went on tamoxifen and says she feels much better and the stiffness is much improved. Some days I feel 10yrs older especially when I first come down the stairs 😞 I cant even use a tin opener some days, bought an electric one now. I had a bone scan not long ago was then given calcium + vit d tablets twice a day, as scan showed the start of osteroperosis in back and hips. On a positive side my hair is growing back finished chemo in Jan 2013 its curly though and I had straight never mind Im grateful not to be wearing the wig in this hot weather.

[Guest user]

It never occurred to me that the way I've been feeling is the side effect of arimidex. I thought I was just not getting "well" after chemo (2 courses) and radiation (every day for how many weeks? I forget) Anyway, I use an online service through insurance to order medication. When I finished, there was a pop-up of Arimedex--side effects. I clicked it and saw everything that has been making my life miserable for five years. I really didn't feel this bad during chemo. I'd have chemo on Thursday, feel like crap over the weekend and go back to work on Monday. I didn't miss a day of work. It didn't help that Tamoxifen triggered afib and svt--that really made me feel lousy until I had cardio-electric aversion treatment (8 hour surgery. Such fun!) My entire body aches and I feel like a little old lady getting up (I'm only 55!) My staff used to think I was acting silly when I made noises when I got up. I felt tired ALL the time, had problems sleeping, hair loss and severe depression. I got so bad that my doctor put me out of work and said I'm not capable of working now or in the near future. The five year anniversary of my taking arimidex will be August 22, 2013. After researching how very many people have had the same side effects, I stopped taking it because I'm a little over a month shy of five years. I'm told that it will take six to eight weeks to clear my body of arimedex, so I'm looking forward to feeling better (hopefully). Quality of life is important to me. Would I have taken arimidex knowing the side effects? I really don't know. I guess I would for my husband's sake. My onc. saved my husband's life over ten years ago, had a residency at Memorial Sloan Kettering in NY, and I trust her judgement. She says it's all about the numbers--the percentage points that something is going to work. My mother had the same type of cancer 30 years ago , same boob, no chemo, no radiation and is still going strong at 90 years old. Go figure!
And, in case you can't tell, I am American.

[meggy]

Hi there, not sure if I can add much. I had recurrence end of last year, node clearance in Jan, then been on zoladex & anastrazole since feb (aged 53 & had been perimenopausal, stopped tamoxifen due to SEs in 2010). I am also on mistletoe thereapy which I believe helps with joints & mental health. I had more joint pain (RA) before I started anastrazole/mistltoe than now! Worst thing now are hot flushes - disturbs sleep, etc. Thought of being an anastrazole for another 4 1/2 years depresses me. I would stop now if I didn't have 14 yr son. Not noticed any hair effects.
cheers
maggy

[poemsgalore]

Thanks everyone. Achey joints I'm used to. I have rheumatoid arthritis. It's the thought of having hot flushes I don't like. I never had any when going through the menopause - why should I put up with them now!!! We'll wait and see what happens. My onco organised my bone density scan but I don't see her until 16th July. Thanks again.
Poemsgalore

ps, my hair has started to come back. I don't mind if it is a bit thinner than it used to be, I had super thick hair which was a real pain. As long as I don't have bald patches!!!

[NIM41]

Thanks Maryland, that's very helpful. I haven't seen my onc yet since swapping to Anastrazole and usually like to ask if I can take certain supplements or whether they interfer with Anastrazole. So this helps until I see him in October.
Rachel, that is pants about the hair loss, I hope it steadies and will not be too obvious.
NIM

[Rachel_0203300]

Hi
I have been on Anastrozole for about 7 weeks now. I have had a few hot flushes (worse after alcohol!) but no achey joints except in the first week. However, I have shed a lot of my already fine hair - particularly on one side of my head. I have managed to hide it so far. The Onocologist has said if it gets too bad I can try another hormone therapy but there is no guarantee I won't have the same problem and other side effects may be worse. She said this is a side effect for only about 2% of those who take Anastrozole. My bone density scan was "at the low end of normal for a woman of my age"! (Herrumph - I am only 53!!). I will have another scan in a year. No supplements were recommeded - my Oncologist feels they are a waste of money. As others have said - conflicting advice is infuriating.
Bye all x

[Maryland]

Hi NIM......Onc recommended the following (she seems to be a believer in supplements post-chemo and holistic therapies, i.e. reiki, reflexology, massage etc.).....for me based on my diagnosis, treatment etc.

Joint Care (from a well known health food shop) max strength glucosamine 888mg and chondroitin 1300mg twice a day. Quite expensive, but they often have deals and probably can be found in other shops!

Calcium 600mg with vit D3 (combined one apparently helps with absorption) again from health food shop. You can take 2 a day, but I take just one.

If my bone scan had been not so good, she could have prescribed calcium and vit D3, but sadly I have to pay!!!!

Certainly the joint care has helped considerably with the achey joints/bones over several months.......hope that helps? x

[NIM41]

Hi
I have switched to Anastrozole after 2.5 yrs on Tamoxifen. It's still early days, 5 weeks in but sofar so good. I do get achy joints and really have to take some time in the morning to get going. Have had some headaches too, but unsure if this is a side effect or an ordinary headache after a busy day at work doing lots of reading... It's difficult to know.
Hot flushes are more intense after a period where I thought they were not too bad (while on Tam). But hey, we're all different and I had an oophorectomy 2 years ago, so was surprised for the hot flushes to return with a vengeance. The fuzzy brain that I felt whilst on Tamoxifen seems to disappear. Dexa scan normal. Am active, going to the gym regularly and exercise seems to easy stiffness of the joints.
Maryland, interested to read you're taking joint care and calcium tablets. What dose are you taking and what brand?
NIMx

[Southcoastbeachgirl]

Hi Ginette didn't see your post when I posted. I don't think you're mad at all. It's important to do what feels right for you
take care x

[Maryland]

Coyotegi......agree it is infuriating that we are given different advice! If you are taking Anastrozole there is a risk to bone density, so insist on a bone density scan (your team or GP can arrange this via their shared care agreement). It is a painless, quick x-ray on the less dominant side of your body...usually hip to see what your bones are like on a scale from normal to osteoporosis. I was given the diet, exercise and supplement advice following the results.....although they were very good.
This early scan is used as a comparison in the future to see what impact (if any) Anastrozole is having on bone density.
Take care x

[Guest user]

I changed from tamoxifen to anastrozole and found anastrazole more tolerable. I took bisphosphonates to maintain bone density. I used to get some pain im my hands, some morning stiffness and uncomfortable achilles tendons but was able to be fit and active, Able to do sport. They really weren't too bad and they made me feel that I was able to reduce the risk of recurrence or spread. As far as I remember the side effects either got less or I just got used to them, All finished now.

[Southcoastbeachgirl]

Hi everyone just back from hospital visit. Onc has taken me off Anastrazole for a month. he says that its important that I get better so that he can reassess what to put me on instead. He thinks that all my health problems have been due to the steep decline in oestrogen. I am post menopausal but at 52 probably still a shock to the system when it stopped completely. I am now looking forward to regaining my energy and returning to some semblance of ' the me' I was before. I guess I will have to take an alternative in a month or so, but think it shows that we have to be proactive in getting treatments right for ourselves. I hope you aren't put off poemsgalore and coyotegi and agree with the suggestions Maryland makes above.
My s/es were worse - it just shows that we are all individual and our treatment must also be that and must be something that we feel suits each one of us. Take care x

[ginette65]

has anyone refused to take this drug.i have.17 months since finishing treatment for ibc. i am 66 and decided i preferred quality of life.am not ony medication at all. fingers crossed i made the right decision. you probably all think i`m mad!

GINETTE65

[Guest user]

Hi , i have just,very reluctantly started to take this. reluctant as chemo dr said it was of low to moderate benefit given my grade (4). no-0ne has mentioned bone density or to take any supplements, why cant they all sign from the same hymn sheet? no feel even less inclined to take it

[Maryland]

Hi poemsgalore......I have been on Anastrozole since August 2012. As southcoastbeachgirl says everyone reacts differently, but happy to share my experience. Main SE has been really achey joints in hands in the mornings. I use one of those stress balls for a few minutes and for the rest of the day they're fine. Achey joints in general, although not sure if that's from Docetaxol, and sometimes a struggle to get up from the sofa, but once up can move quickly!!! Hot flushes have re-appeared.......my ER was only +3 so had DEXA bone scan to ensure any small benefit did not outweigh risk to bone density. Have the bones of a 40 year old (am 56) shame about the body! Hair has grown back OK...16 months after it fell out have what looks like a cropped hair cut of choice, however Onc says that Anastrozole is likely to inhibit thickness growth (if that makes sense). As recommended by Onc take a calcium tablet and jointcare tablet per day, eat slightly more yogurts, cheese and drink a bit more milk than used to, along with minimum of 15 mins walking every day.

Hope some of that helps.......all I suppose you can do is monitor and if SEs become too much then there is possibly an alternative? Take care x

[Southcoastbeachgirl]

Hello Poemsgalore
Many people on this site have managed very well with Anastrazole - all side effects are very individual as with all treatments.
I would just say that my experience has not been a positive one and I am just about to see my onc this evening to try and change to something else. The onc nurse thinks I have had a bad reaction to Anastrazole after 2 and a half months. many ladies on here seem to be ok with it. I thought I should try and put up with the side effects as they were to be expected. Finally this week, I was ready to throw in the towel as my GP couldn't work out why I was feeling so unwell.
You've come through so much already, I am sure you will manage this part of your treatment also. For me, my quality of life has been reduced and I need to do something about it. 5 years is too long. I am hopeful of finding something else which suits me better.
happy to explain in more detail but don't want to sound negative xx

[poemsgalore]

Hi, I've just had my first Anastrozole. I don't know how many SEs I will get, so I'm a bit nervous. In fact I'm more nervous of this than I was about chemo. After all, chemo only lasted 18 weeks - this lasts for 5 years!! I'd be interested to hear others' comments.

Poemsgalore xx