Arimidex and tiredness

Hi,

I’m new to this forum so hello to everyone. Ive been taking Arimidex for around a year and have a few aches and paine etc but I find the worst side effect is the tiredness and weakness that I feel. I wondered if many others feel the same? I’m ok if I’m pottering around but if I have to undertake a major task I feel incredibly weak and overwhelmed by the feeling that I can’t cope or do whatever it is. I also feel lethargic a lot of the time too. Even though I’m tired, I can only manage around 2 hours of sleep before waking up…tossing and turning before dropping off for another couple of hours.
I would love to talk or hear from others who feel the same.

Sheana xx

It may sound strange but to help with the tiredness and aches and pains doing some exercise will make a difference even if you have to force yourself. I find a gentle yoga class and 15 minutes on the exercise bike really make a difference and it is also important when on Arimidex to keep your bones strong so I also lift some weights - as well as walking home with the shopping. Hope you feel better very soon.

hi
This is great - 2 threads regarding tiredness and lethargy!! I have been taking Arimidex for 18 months and this last 2 months everything is an effort. The dust at home piles up - and my son is lucky that his school uniform is ironed every day!! It takes me all my time to get up and go to work 5 days a week. My back aches - I use the gym 3 times a week and the excercise seems to aggravate a headache. Do we get to win at all?
Thank you for sharing - it is good to know I am not alone with this side effect

Gill

I have stopped Arimidex the last 4 weeks, after consultation with my GP - side effects severe left hip and left foot pain, as well as in both hands and extreme tiredness. I have been on it 4 yrs and the symptoms have steadily got worse. Tiredness? I went to bed last night at 8 pm, woke at 7 am this morning! I find I can do pottering (laundry, ironing, unload the dishwasher etc.) in the mornings, but come early afternoon I need to take a nap of about 2 hours. Luckily I am retired, as I don’t know how I would cope with a job.

The hip and foot pain has diminished tremendously, so am convinced it was caused by Arimidex. I am seeing my GP next Wed for follow up and am going to ask for a referral to an Oncologist to decide if I can switch back to tamoxifen (only had it for 2 months after chemo and rads), or another AI. Hopefully, the 4 yrs of Arimidex has given me sufficient protection against a recurrence, but want to talk to an Onc about my prognosis without Arimidex. I had lymph node spread.

I have had various x-rays, bone scan and DEXA scan, but no-one thought to mention my bone pains could be due to Arimidex, which I find alarming. The tests did show osteo-arthritis of hips, hands and feet, and reduced bone density, but I don’t think these problems accounted for the severe pain. Hopefully, an Onc can sort me out with some new meds.

Liz.

Hi Liz,

Great to hear your story…well, if you know what I mean???

I have hip pain as well that stops me sleeping…it’s horrible. When I was first prescribed Arimidex a year ago, I had a bone density scan and they said my hips were ok but there was some thinning in my spine but decided to carry on and put me on Arimidex. The doctor said that I should have a scan every year to keep an eye on my bones…have I had an appointment …no! sometimes I feel that the doctors are just not interested in me…paranoia or what! I will follow it up but surely it should be down to them but there you go I guess!

I hope you get switched back to Tamoxifen, I was certainly much better on that drug than I am on Arimidex but when I discussed the the horrible side effects with the consultant he said that if I wanted to come off it he would…’ spend a long time trying to talk me into staying on it’ Easy for them to say. But as Nicola said on another thread, the possible alternative is a lot worse. Keeping cancer away is prority.

Sheana

I too was scared to stop the Arimidex, but quite frankly, the pain was so bad when laying down, I was woken by it every 2 hours…and what really decided me to stop it was when I went away for a few days recently with a friend, and could barely put my left foot on the ground and was hobbling on my toes. My friend was very concerned, and made me promise to go and see my GP. I haven’t had an Onc since finishing chemo and rads Feb 2004 - don’t know why - he discharged me. The only follow up I have had is an annual review,and a bi-annual mammo and ultrasound with my bc surgeon. Bc surgeon said, when I queried why not annual mammos (as my tumour was non palpable) this is due to risk of radiation. Hubby and I believe it is more to do with resources. BC surgeon referred me for DEXA and bone scans, as he is aware I have Crohn’s and was on steroids for some 30+ yrs, which usually causes depletion of bone density. He sent me to see a Professor of Endocrinology in Feb 2008, after I mentioned the hip and foot pain at my 5 yrly review. The Professor then wrote to my GP advising I stay on Arimidex and the bisphosphonate Alendronic Acid, to prevent further bone loss. He doesn’t have to live with the pain though. I guess what I really want to know: is 4 yrs on Arimidex enough to give me the protection I need against a bc recurrence, and I think only an Oncologist (not an academic Professor of Endocrinology who probably only saw me as he is doing research into side effects of Arimidex), is qualified to help me make the decision whether to stop Arimidex long term.

Difficult decision, which I don’t think as patients, we are sufficiently knowledgeable to make without intelligent input from an Oncologist. We’ll see what happens with the GP next week - if he won’t refer me, I shall ring my bc surgeon or my gastro. I sometimes feel as if I am left to deal with my concurrent diseases on my own as my two consultants don’t talk to each other. I am currently on self injected chemo (methotrexate) for Crohn’s, and wondered if this is the culprit, but my GP said absolutely not. Who do you trust? I do at times despair, but somehow just pick myself up and talk myself into feeling good about being alive. I lost my twin brother to brain cancer when he was 50, Dad to colon cancer at 59yrs, and as I am 63 yrs now, wonder if my time is up. All of Dad’s 7 siblings died of cancer, so guess there may be something in the genetic line.

Take care and hope the Arimidex side effects diminish. Some of the ladies on here switched from Arimidex to Aromasin (or there is Femara now - widely used in the US) and had less side effects.
Liz.

Hi Liz,

Don’t think that your time is up…I’m sure you have a long way to go but I do understand what you are saying. I went my GP about 6 weeks ago and had a real moan saying that I was fed up battling through every day. I have a long story of other problems that I won’t go into now that have made me ‘battle’ through life for the last 6/7 years and just when I thought I was getting on top of things I was dx with breast cancer. I had a mastectomy and node clearance…3 affected so it was a nasty, aggressive cancer. anyway, I’m 46 and a single parent to two boys of 16 and 13 so they are really hard work…so sometimes I suppose, I feel that I’ve had enough.

I would love to wake up one day, full of energy and enthusiasm…not with the weight of all my worries weighing me down. My sleep is awful…I seem to only manage two solid hours before waking up, tossing and turning before dropping off again. Sometimes it’s because of my hip, others there is no explanantion but I just never seem to feel refreshed.

God…listen to me!! sorry!

Sheana x

Hi Sheana

No need to ever feel sorry about having a rant on here - for quite a few of us it is the only thing that keeps us sane. Although family and friends are very supportive in a general way, they have not walked in our shoes and have never known the terror of being diagnosed with a potentially fatal illness. I like to think of this forum as my “therapy class”, where I can share my fears, hopefully help others with my own experiences, and not least, get vital information and emotional support from others in the same position. Like you, I had 3/18 nodes affected, and this is what has concerned me more than the 2 cm tumour. I console myself with the thought that after 5 yrs, I have no mets to other organs. My bc surgeon said at my 5 yrly review that he should discharge me, but due to what he calls my “multi-factorial problems” he will see me next Jan. I am grateful for small mercies. Wish I had a magic tonic/potion I could send you…cyber hugs will have to do for now!

Liz.

Hi Liz,

We are quite similar as in I had 3/12 nodes involved and that is the aspect of the disease that concerns me most too. I had what they call ‘multi-focal’ cancer in my breast…many small tumours that mant my breast was ‘very unstable’ Eeeek! I hate the thought that it had started to progress through my body but so far, I’ve been lucky like you and have no evidence of mets anywhere else.

What do you mean by ‘multi-factorial problems’? Is that the lymph node involvement?

I used to spend quite a lot of time on the MacMillan site, Share, but go on less these days. I met some great people on there but it deals with all cancers and I wanted to meet and talk to people who really knew what I’m talking about…breast cancer/ Arimidex etc.

Thanks for your support,

sheana x

Sheana

Hi all
I have been on Arimidex for about a year as well post chemo,surgery and radiotherapy. I feel just the same as all of you bones andjoints aching can’t lie in at the weekend as so sore, have to get up and try to get on. So tired for a lot of time and feel that I have to force myself to do everything. Do try to walk a bit but am frightened to go to far in case i can’t make it back. Occasionally take Brufen which helps a bit but often think to myself is the best I am going to get?
take care
Suzie B

Hi Sheana.

I decided to post here in answer as this looks like attracting more people. So many of us suffering from tiredness! I know just how you feel looking at things that need doing but totally unable to work up the will to do them. I too, don’t sleep well and I must point out that some people have sleepy tiredness and some of us have weak type tiredness - there is a big difference although the overall effect is the same.
I can no longer queue for things - say in a shop - for long as I will feel like I’m going to collapse but I can walk for several miles albeit at a very slow pace and not up too much of a slope. I will be pooped at the end though. I don’t seem to have any muscle strength either; I guess I feel feeble and after too much activity my muscles will ache as if I have run a marathon. There are times when I think I will buy some Tena Lady so that I don’t have to bother going upstairs to the loo :slight_smile:

Seriously, I have tried all sorts, exercise, yoga, ignoring it but nothing helps so I live with it and am no longer tough on myself if things don’t get done. For you though with two teenage boys, even without cancer and its treatment life would be tiring and all I can suggest is don’t knock yourself out doing things that they can well do for themselves. Having been one and had some, I know that teens are introspective and can’t think of others in the way that adults can so will need to be told, usually time and again!

I have many other side effects but the tiredness is easily the most life altering so I have every sympathy with you.

Hope today is not too bad.

Nicola

Hi Nicola,

You describe how I feel exactly! I know its awful but its also fantastic that you understand. I honestly thought there was something really wrong with me. You mention about walking up slopes being hard…I’m the same. In facte, a slight slope makes me feel like my legs are walking thru mud? Is that how you would describe it?

I agree that sleepy tired is totally different from how we feel…what would you call it? Lethargy?

It certainly is tough…you haven’t said how old you are…Im 46 and feel like 86 which is soooo depressing. I know it is awful nicola but you have made me feel so much better, I can’t thank you enough. (((((((x)))))))

Sheana x

Hi Sheana.

I feel the same as you - it’s great that someone else understands but a shame for the reason.

I’m 50 and feel 90!! Walking through mud is a very accurate description of what I feel like. The thing I miss most from my former life as a healthy person, is fitness. At our age it is VERY hard to have so little oomph. While never a sporty type I used to be very fit for my age and loved walking and bike riding but I think the only way I will get back on my bike is if I have one of those electric ones.

One of the reasons it is so good to hear from others who are in the same boat is that no-one else can really understand no matter how kind and thoughtful they are. People equate our tiredness with their own and it is nowhere near the same thing. I get fed up with explaining and no longer bother unless someone has been really thoughtless. Most of my family and friends are used to what I can and can’t do but even some of them don’t really get it and it is wearing to have to explain why I can’t do something and for them to look at me as if I could if I tried.

At least we know we are no alone. God, typing makes my arms ache!! Please tell me that that happens to someone else too:-)

Nicola

Hi Nicola,

like you…again…I wasn’t really sporty but kind of naturally fit. I’d be the one first to the top of the stairs or at the front on a hike up a hill etc but now, I wouldn’t even try. In fact, the thought fills me with horror and then depression. This is something I’m finding hard to come to terms with…I look ok from the outside and friends and family will suggest doing this and that and I’m forever saying no. Again, like you I keep explaining why but I’m sick of hearing myself say…‘it’s the Arimidex…makes me feel tired’ It seems so feeble in itself and unbelievable that a 1mg tiny tablet can have such an impact.
As I said before I talk to my doctor and she doesn’t REALLY understand. I have a terrific relationship with her and she has seen me thru many ups and downs over the last few years but when I say I’m tired she goes into the professional mode of blood tests etc which…touch wood…never come back with any problems. Then she’ll say…more exercise…walk the dog…go swimming…and I know what she’s saying is valid but I’m totally sure she doesn’t understand the way I feel. I suppose she can’t be expected to…I wouldn’t if I wasn’t taking Arimidex.

You are the only person who has put in a nutshell how it feels. I know I’m repeating myself and I’m sorry but I have been to hell and back over the last few months worrying myself silly about what’s going on with me. I have a chap I see who is always suggesting doing this and that and I’m so reluctant that it must be awful for him. he says he understands but I often think he would be better off with someone else with a ‘normal’ life.

I wrote a thread on the Macmillan site called ’ Breast cancer and the little extras that go with it’ and in it I talk about all the things that have hit me since dx. I’m not talking about the obvious operation and chem/radio, I’m talking about this stage in the treatment which if I have to be honest, I’m finding the most difficult to cope with. When I was having chemo during the summer of 2006 I would cut the grass etc on my good week…now I don’t have a ‘good’ week as such.

But yet again, we come back to not taking the drug and possible consequences which is not a chance I’m prepared to take. but at least now I can talk.

Sheana x

Hi Sheana.

I’m never too keen to tell my whole story in case it freaks people out but it is so relevant in this case and might help you understand how I came to my decision to accept the tiredness.

So… A brief history. I had cancer for the first time in 98 when I was 40; left mastectomy, 1 node positive, chemo, rads and then Tamox for 6 months but it didn’t agree with me so moved on to Zoladex as was still having periods then. Had Zoladex for just over 4 years and then the onc decided I would be ok. I was worried as my tumour had been strongly oestrogen positive but I was assured all would be fine.
1 year later I was back for tests on a lump in the remaining breast; was told it was a fibro…something and nothing to worry about - it might go on its own or might even get bigger but not to worry. 9 months later march 06 ,I went back for another lump as guess what? The fibro…lump was now nearly a 4cm tumour plus DCIS and a bit of lobular stuff in there too. All this in very small A cup boob!! Again 1 poss node. So another mastectomy ( at least no more mammos) chemo, rads and now Arimidex.

I know it worries people to read of women whose cancer comes back because that’s what we all dread but my second one was a brand new primary and this is not very common - 1 in 10 chance and really just stonking bad luck. But with two cancers being strongly oestrogen positive I feel I have no choice but to continue with some form of hormone treatment for as long as it works. This does make things easier to accept.

I too had chemo in summer 06 but this time ( FEC) it knocked me off my feet and I have never really recovered. There is very little data on second primaries and the effects of treatment for them so no-one knows if my troubles are Arimidex or chemo related but my money is on Arimidex.

Like you one of the hardest things to deal with is not so much how I feel as I am used to it but the restrictions is places on my life and other peoples reaction to this. On a day when I am feeling sorry for myself it is much harder to say the usual “fine” to the “how are you” query when what I feel like saying is “well, I feel like a corpse today and you?”

I envy peoples health and fitness and have no patience with those who whine about trivialities -they should try my life for a week. However I realised very early on the first time round that the person I was had gone and from now my life would be different. Hard though it is, the chemo etc is the easy bit. After is the hardest of all. But I think once you realise that, it becomes a bit easier.

I have had an extra 10 years. I’ve seen both my children graduate and get lives of their own and you too will see your sons grow and leave the nest (with any luck - think -they might stay!!! ) so… lucky me eh?

And my husband has had me to nag him for an extra 10 years too.

Anyway it’s nearly my bedtime - glass of wine in bed while I watch Heartbeat so that’s one benefit to being weary; I get to be a slob.

Nicola

Nicola,

Thanks for sharing your story with me. I think you say some very wise things and I guess I haven’t accepted that the ‘old’ me has gone forever. I need to accept my life for what it is but it’s hard to think that things won’t get better at only 46. I feel so old. Probably what doesn’t help is that I am a scheme manager running an over 55’s supported housing development so I see people every day who are in their 70’s and 80’s who honestly have more energy and zip than me. That upsets me tremendously and as we have chatted today I have realised that I’m fighting against what I have become…still waiting for the old me. Sometimes I get moments of clarity when I see the situation clearly…that I’m lucky to be alive. That in itself is enough and I should grasp what I have with both hands and celebrate…but I don’t. I hate what I am…that attitude must change or I will ruin what time I have. And that of course is the big question isn’t it? But no one knows that do they, no matter what they have been through so that musn’t be dwelt on either.

WOW!!! I have some serious psycholgical issues to work through! Let’s hope we keep chatting and maybe you will help drag me through.

Sheana x

Hi ladies - isn’t it SO good to be able to share our side effects with people who really understand?

Sheana, although my bc surgeon called my health problems “multi-factorial”, they are not specifically related to bc. My gastro had previously said: “Liz, you have empirical problems…” I didn’t like to show my ignorance as I hadn’t a clue what he meant so asked my much brighter husband what the word meant after the consultation. He said: “he just means he doesn’t know how to treat you”. When I got home, I looked it up in a dictionary: “based or acting on observation or experience not on theory; deriving knowledge from experience alone”. Made me feel like a freak.

The problems really arose when I got bc - I was in a flare of Crohn’s, on huge amounts of steroids plus methotrexate and the first Onc I saw told me in no uncertain terms that if I didn’t stop my methotrexate chemo in order to have FEC, I would die of septicaemia - just what I needed to hear! When I asked if he had treated a patient with my concurrent diseases he replied: “No, but I have treated a patient with Crohn’s and psoriasis”. I nearly hit him - he was talking apples and apples, I was talking apples and pears. I also have psoriasis, but don’t need toxic chemicals to control it. He got mad with me when I asked how he would treat me if the flare got worse and he responded, “we will deal with that if it happens”.
He then unbelievably asked me if I wanted to continue the consultation - my first Onc appt to decide whether I would agree to FEC chemo - I fled the room in tears and refused to see him again. I rang my gastro and he said he could not intervene in my bc treatment as it was life threatening, Crohn’s is not - which I beg to differ with, but that’s another story.

Anyway, to cut a long story short, I found a young, female GP who worked one morning a week in the Oncology Dept and she sorted me out with a small daily dose of dexamethasone, but I could not eat any food, not even home made vegetable soup with the solids strained out. She prescribed Fortijuice, a drink that contained all the nutrients and minerals I needed to stay alive, and I sipped this for 4 draining months. Lost 28 lbs, which took me down to 7 stones.

What made me really mad was that neither of my doctors, the Onc nor my gastro, bothered to seek peer advice. I had e-mailed every major hospital in the USA I could think of (Mayo Clinic, MD Anderson, Cedars-Sinai, and the Royal Marsden, Christie’s in Manchester, plus the IBD specialist hospital in Harrow, Middx) , all of whom responded immediately and said they were sorry but they had not treated a patient with the concurrent diseases. I very nearly did not have FEC chemo, but somehow I decided I must have it. My body may be weak, but my mind isn’t.

I spent those 4 months virtually housebound - even the 6 steps to the bathroom from my bed resulted in frequent accidents and twice I was faecally incontinent in the street, to my utter embarrassment. A neighbour found me one day in the local village, sitting on a wall, with tears streaming down my face as my white trousers were covered in faeces, not able to get back to my car. She drove me back to my car, and has never mentioned the episode since.

Well, that period taught me something - that I had to rely on myself and seek out whatever help I could by researching on the internet. Happily, I have had the most wonderful support from my husband, who is 80 yrs this year, disabled and not able to walk more than 50 yds (still trying to get a diagnosis after 6 yrs) and has never made me feel lazy or useless. I now have a young woman from the local village coming in to do the heavy cleaning of our apartment every other Monday and that has been a godsend. I don’t feel guilty about not doing much housework as I know I need to pace myself during the day and usually have a nap in the afternoon. My gastro got me DLA, which helps pay for the help I need, not having any children and only one sibling 600 miles away, who is absolutely useless.

Sheana, don’t hate yourself - try and accept that you have a life threatening illness and you need to do whatever is suitable for you to maintain your life. I don’t wish for one moment to sound glib nor patronising, but for me, having had serious Crohn’s problems for 38 yrs, I have found bc much easier to deal with than knowing there is very little the medical profession can do for Crohn’s. Indeed, my lovely, shy, but gentle bc surgeon said to me, after my lymph node removal; “Liz you will probably die of Crohn’s rather than bc, as we can do so much for bc”.
Didn’t know whether to laugh or cry! I think he was trying to make me feel better about the lymph node spread.

Gosh I could talk to you forever - wish I lived near you (I live in isolated South East Cornwall) and we could meet up for a coffee. So pleased you came on to this forum for support - which is always there from so many people in the same situation as we are.

Now, just got to see an Onc and get an alternative to Arimidex!

Take care all,
Liz.

Hi Liz,

Thank you so much for your support. Yes, it would be fantastic to meet up and have a coffee…I imagine that we would be chatting for hours and hours! You sound a very strong lady, it’s odd but people say that to me all the time but I don’t think I am so you are probably the same. But the extra complications your other illnesses have caused you make me feel ashamed.

A little of my story…

I’m a single parent…at the time boys of 14 and 11 when dx…and that made life hard. My dad also became ill when I was dx and he died after my first chemo treatment which was a nightmare. My mum was in pieces so my brother and I had to arrange the funeral…I vividly remember thinking that I would be next as we selected his coffin. God it was awful. That was when I shaved my hair off because it was coming out in handfuls all over the place…thought I better look reasonable for dad’s funeral.

My mum has never recovered and is in fact housebound now. Not thru illness, thru mental problems…phobias etc so I have to do everything for her…shopping etc. She won’t even hang washing out. She is only 75 but acts much older. I have tried to get her professional help but she is unwilling to co operate.

I work part-time as a scheme manager in an over 55’s housing development which is testing at times but I need to work to get tax credits etc to enable me to live!

That’s briefly where I am at now. I came onto this forum because I have been going through a really bad patch…I suppose not understanding why I don’t feel the same person as I did before dx. I need to accept that I won’t and hopefully with help from ladies like you, I will get to grips with it.

Sheana x

Hi Sheana - I think it is great that you have found the time to come to this site for help and understanding, and found it…there is always someone here who will respond, no matter what the query. It is quite understandable that you are feeling low and stressed. In time, I believe you will be more accepting of your disease, and once again, find some joy in life.

I don’t think any of us who are diagnosed with cancer ever feel as we did beforehand…I look upon it as the new normal. I would guess a lot of us have learned to live with the fear of a recurrence or secondaries, but at the same time, cannot let it rule our lives. As a Virgoan, I am pretty pernickety, but have learned not to sweat the smal stuff anymore, and I don’t make long term plans. I also will not surround myself with negatively thinking people who depress me.

Take care, and chin up!
Liz.

Liz, I just wanted to say that I so sympathise with you re the Crohn’s issue, as my son was diagnosed with this horrid disease 3 years ago when he was 25. It is proving very difficult to control, and the embarrasment it causes is tremendous. He is still single, and living at home with us, with barely any social life.

Anyway, I am hi-jacking a thread here, for which I apologise, but I applaud your courage and forthrightness when discussing your problems. Coping with both Crohn’s and side effects of BC treatments is a real double whammy!

And oh YES! I can so relate to the tiredness/lethargy on Arimidex! I feel as if I’ve been catapulted into old age!

Hugs

Dee
x