Fatigue fatigue moan moan moan

Is anyone else suffering completely debilitating fatigue on Arimidex - or any other hormone therapy?

I am 45 and have been taking Arimidex for 18 months now and I am really beginning to doubt that I can stand another 3 and a half years. I waited a while to see if the fatigue was related to the oopherectomy or chemo and rads and if perhaps it would subside with time. But it is pretty obvious now that it is all coming from the Arimidex - and the SEs seem to be intensifying with time not diminishing.

My quality of life is really suffering. I am not doing too badly with the joint pain and I can deal with the hot flushes - but the fatigue is just awful. I feel like I have permanent flu. Dizzy, confused and not a scrap of energy. Limbs ache, head spins. No amount of rest relieves it. If it is mild then I find exercise sometimes helps a bit - but then the fatigue is twice as intense when it strikes.

I have always been a very healthy (or so I thought!) active and energetic person but I really am a useless lump now. I don’t recognise myself.
Sorry for the whinge - just wondered if anyone else out there was getting fatigue as badly as I am and if anyone has changed meds and found an improvement.
I do all the things I am supposed to do - eat well, rest when I can, exercise - but none of it helps.

So sorry that you are having such bad side effects… may not be relevant but has your gp been monitoring your blood pressure? I’m on tamoxifen and it had raised mine - I was also being dizzy, light-headed etc from the moment I got up until I went to bed… I got put on blood pressure medication and literally within 48 hours it had gone and has made such a difference.

Theresa x

Hi Msmolly

Have you had any blood tests recently to check thyroid, haemaglobin levels etc? If not might be worth it to rule those things out.

I’m on tamoxifen and still getting fatigue although I’m 6 months post treatment. All my bloods were normal so either it’s still just recovery or the tamoxifen. All I can say is that it’s horrible and very frustrating. The hot flushes I’ve had on tamoxifen have also increased with time. I’ve been on it 8 months and it’s been in the last couple of months they’ve got much worse.

Elinda x

Thanks Theresa and Elinda. I had a load of tests done recently and everything seemed to be fine with BP etc. All bloods were ok and no indication that anything is amiss.
It seems I am lucky to have minimal bone pain - some women are in agony on Arimidex. But fatigue really is my main SE.
Just have to hang in there I suppose. It’s just so frustrating not being able to devise a coping strategy or take other medication to help alleviate it.
I’ve found that the cancer charities’ advice is pretty useless when it comes to fatigue management. All this “sit down to dry yourself after you’ve had a bath” stuff. I’ve got a 3yr old for heavens sakes!
Anyway - best of luck to you and thanks for your replies.

yes, yes, yes mrs molly ! I know what you are talking about. It seems to be a choice of 'put up (with it) or shut up (should be pleased you are still here) with regards to side effects of hormone treatment. Like you had terrible side effects with arimidex which made me come off it and now on tamoxifen despite being menopausal. This is not much better - fed up with being hot and sweaty all the time, fat (no amount of diet or exercise seems to make any difference), moody (already on enough antidepressants to knock out an elephant) and so achey and so so tired. I too had a lot of blood tests and everything came back normal.The only thing that will help is female hormone but cannot have that as my bc was very strongly oestrogen positive. I am not the same physically or mentally which I expected after all of this but the ‘different’ me is hard to endure sometimes. I need to earn a living and cannot do this effectively for very long without fatigue, aches, depression etc kicking in. Like you have mentioned, I have found nothing of help from the cancer charities.Please bcc and others the side effects of hormone treatment and how to cope with them is not featured enough in your literature.

Rachy xxx

I was reluctant to post but Rachy7 has summed it up.

I had 6 years on tamoxifen with more or less those symptoms. I then tried Zoladex and Femara.

The side effects were so bad, including some quite severe psychological ones, that my onc insisted I came off them.

After nearly a year off treatment my cancer returned with mets to my spine and lungs.

I went back on femara. Initially it was just as tough but it does improve ( a bit)!

My choice is different. I am putting up with feeling crap to save my life. Is it worth it? Well yes, most days it is as I am still here for my daughter. However I cannot pretend I do not have very low days.Obviously dealing with mets is part of that but the fatigue, depression, weight gain and aches and pains take their toll.

But yes I am still here and I consider my self lucky and blessed.

Julie xxx

I have very tired times everyday. Yesterday I went shopping with my Mum and fell asleep whilst waiting for her outside a changing room, very embarrasing - I just had to put my head down and that was it I was gone!!
Most days some time between 2 and 4 I’m so tired that I could lay on the floor and sleep no matter where I am!!
Doctor says that exercise will help with the chronic fatigue, I do and hour a day already!!!
Very hard to work with this and the dizzy feelings - on the plus side though the upset stomachs mean I’ve lost a stone now!

Thanks julie and Katie for your replies.Certainly makes you think that bc could come back if I stop the hormone drugs or get secondaries. What a hard situation to be in. Don’t know the answer for myself.

Rachy xxx

deleted

Hi everyone

Just wanted to let you know that I’m passing your comments to the publications team so when they next review any information material that includes fatigue, they will have your comments to consider.

We know that for some people fatigue does go on for many years and can really affect your quality of life. As part of our Moving Forward programme, we are running specific sessions on fatigue. You can contact your local centre (breastcancercare.org.uk/about-us/in-your-area/) to find out more.

Our clinical team also asked me to echo what some of you have said here: When fatigue does go on longer than a few months, it’s a good idea to tell either your specialist (especially if still on hormone treatment) or GP, so they can investigate as necessary to rule out any other medical problems and plan ways to try to alleviate some of the symptoms.

with best wishes
Leah

Thanks very much Leah - good to know that some info gets fed back into the system.

5+ years of hormone therapy and feeling like death warmed up really isn’t easy - especially if you have kids to look after and a job to hold down.
I would really like to see the cancer charities be more vocal about the complexities of living with cancer treatment related fatigue with regard to Benefits etc.
I work from home and am self employed - thank god - because I really am totally unemployable whilst on this drug. I wouldn’t employ me that’s for sure.
The general expectation for women to just bounce back into their old lives as soon as the scars have healed is idiotic.
Hormone therapy can be incredibly debilitating and life altering. More than chemo in my opinion because it is for such a long period of time.

I hope that BCC are developing a reaction to our ‘esteemed’ chancellor’s changes to DLA.

I couldn’t agree more about the way fatigue is perceived. I was told by one Oncologist to do more exercise and had I thought about getting a dog. He had totally assumed without asking that I wasn’t doing any when in fact I go for a 30 minute partly uphill walk every day. I think what some professionals fail to grasp is that the more you do the more tired you get.

I was self employed prior to treatment and did claim ESA for a while. When it came to the review there were no boxes about fatigue it was all about mobility. I withdrew my claim as I couldn’t bear the thought of being quizzed on my perceived ability to work. I’ve always been a ‘workaholic’ and went in every day during excruciating pain etc when I had endometriosis.
My GP and breast care nurse both thought it was too soon to be considering a return to work given all the problems I’d had during treatment but the ESA isn’t interested.

I still haven’t returned to work although I’m doing some voluntary work a couple of days a week now.

I wish cancer charities would be more proactive in bringing the issue of fatigue to the forefront with regards to ESA etc. I’m fortunate in that we can survive on my husband’s income and our savings but not everyone is so lucky.

Elinda x

totally agree with all of you. I only work 2 days now and the rest of the week really struggle to get up despite going to bed early every night

I have to join in with the moans .
I´m asleep as soon as I´ve washed the pots , and in the afternoons I´ve sometimes sat down and just gone . I dare not close my eyes anywhere anymore .
Some of it is the fact that I´m awake in the night because of night sweats , have to get up and wash myself down . Then it´s trying to get back to sleep .
I excercise evrey day , at least an hour , usually two with my dog over rough ground . Also I´m going to pilates and bums and tums to try to stop myself stiffening up . Was doing breathing excercises today in pilates and felt my eyelids rolling !
No , I´´m not the person I was . At times I´ve felt that I could turn into an axe murderer .
Lack of oestrogen is a b…d , and knowing that these hormones are sucking the life out of you is difficult to take . I keep telling myself that they are also sucking the life out of cancer cells . Sometimes it makes me feel better , and sometimes it helps me not at all !
Kris

This might be worth a try…
I was on Tamoxifen last summer, following treatment, & was well, back at work & exercising. I then had a blood test which indicated I was post menopausal so I stopped Tamoxifen & was prescribed Letrozole.Aches, pains & fatigue then kicked in.I also had several viral infections so wasn’t sure what was causing various symptoms but I was becoming more & more unwell.In February,on the advice of BC nurse I stopped Letrozole & following clinic appointment went back on Tamoxifen.However fatigue & low mood became progressively worse & more & more debilitating. I was signed off work but symptoms continued to worsen.
When I went to collect my last Tamoxifen prescription I asked if they had a different brand as I had heard that could make a difference. I was sceptical but thought it was worth a try.Within days I felt well, normal, me again!The difference has been incredible. I have got energy,I don’t feel tearful, I am going to the gym every other day - even ran on the treadmill this morning - hoorah!- & back to work tomorrow.
Can’t quite believe this dramatic change but all I have done differently is change the brand of Tamoxifen so maybe that can make a difference. Certainly seems to have done for me,
Jane

msmolly - I raised your question about the changes to DLA with our Policy & Public Affairs Manager, Tamsin James, and this is what she said:

"You have highlighted an important announcement from the recent Budget. The government will be introducing the use of objective medical assessments for all Disability Living Allowance (DLA) claimants from 2013-14, which aims to “control spending” (p.24 of the Budget) in this area.

“This is obviously concerning for breast cancer patients, many of whom cannot contemplate work while suffering the effects of treatment. This issue is firmly on Breast Cancer Care’s radar and we will be doing all we can to assess the impact of the new system for people with breast cancer and to speak to policy makers before and during its implementation to make sure they are aware of the needs of cancer patients.”

Very good to hear Leah! You really are doing an excellent job of getting our voices heard. Thank you - it is much appreciated.

Thank goodness for that!!! i thought it was just me…went back to work in may after a year off and guess what…my doc has signed me off again because i can’t cope with the stress at work. It is also getting me down because i may have to wait 18 to 24 months for my recon. That is making me feel down when i know of others that get theirs in about 15 weeks. I was feeling guilty, thinking am i just being mardy. Hot sweats, tiredness, emotions and tamoxifen certainly don’t mix. I feel guilty for not being back to normal…thats what everyone expects of you now isn’t it…just glad i stumbled across this thread…pauline x

Thanks Leah. Good to know that the message is getting through.

I hope that BCC will continue to campaign with regard to ESA as well. The DWP seem to think that you have your treatment and then within a couple of months that’s it and you’re ready for full-time work. No account is taken for the amount of treatment given, reaction to treatment etc. It is unbelievably stressful to be worrying about money on top of everything else.

Elinda x

Sounds weird Jane , but it happens here as well .Although the pharmacists assure you that they are "identical " , it might just be a miniscual change and that could be the one that makes all the difference .
My letrozole has now been changed . I saw the packet was different and asked "Why " . I was told my doctor had stipulated that they were to prescribe the cheapest . Well that cannot be right , as they are on a six month prescription for me at a time and this is within the first six months .The ones I will start tomorrow are spanish , the others were from France .
Why do they have to keep messing about , why can´t they just leave it all alone . I´m pleased it worked for you Jane , but worried these may even be worse than the others !!
Kris