Arimidex side effects.

My friend had a 1cm tumour removed 2yrs ago.It was hormone positive so her treatment consisted of 5wks radio and Arimidex for 5yrs.She’s always been very fit- working 18hour days running a farm almost single handedly! On dx she changed her diet to organic and has cut out dairy.Up until a few months ago she was sailing it…then the aches and pains started and the horrible tiredness and sweats.She’s been told its all part and parcel of the course and at the moment doesnt know how she’s going to get through he next 3ys as she’s finding it very hard to cope with the fatique.Any advice would be very welcome.as I’m triple neg myself and have no idea what to suggest!.

Can’t really help, just to say she is not alone, I am suffering too, the alternatives are few, other drugs with same side affects, or come off it.

I would say she may need to re-assess her life and prob cut down her work regime. This can be depressing for some, but also liberating as work is not the be all and end all of life!

Good luck

Irene

Thanks for your reply Irene.My friend runs an animal sanctuary and it would mean putting a lot of the animals down.As it is a registered charity (in the west of Ireland)she will have to get help from somewhere! We were hopeing there was a supplement- herbal or otherwise,that could help with the awful tiredness…There are some benefits to being triple negative after all!

Dear Joseymarie

Sorry to hear about your friend’s problems with Arimidex and rads. I’m very active too, still walking dogs and horse riding but the fatigue and joint pains have slowed me down as I am on both those two, after a year of surgery and chemo.

From my perspective, this is something your friend may have to accept. None of us stay young for ever, so old age will take its toll, whether you have a diagnosis of bc or not. You say that animals will need to be put down if she is not there, so now is the time to start recruiting younger, fitter volunteers who can take up the reins gradually.

A lot of young people relish the opportunity to work with animals, some of them may want to train later to work in animal care. I suggest she starts asking for and accepting help with the care of her animals so that their future is secured, should she at some point have to cut her work down even further.

If she can pass her skills with animal care to other people, that might be a better use of those skills than driving herself into the ground.

Just my opinion based on my own experience, so please don’t be offended if this is not appropropriate.

My onc has said I can try glucosamide for the joint pain. The fatigue is something you can only deal with day by day and try to do stuff when you are at your best - mornings or evenings, whichever is best for her. A good varied healthy diet helps. I can understand why she has stopped having dairy, but she needs to make sure she is getting plenty of calcium and Vitamin D from other sources as osteoporosis is a side-effect of the hormone treatment.

Wish your friend good luck from me. Her job sounds lovely - better than being stuck on a computer all day!

why are you still taking arimidex ? I saw my oncologist in January this year and after taking arimidex for nearly a year she told me I had to stop taking it and begin taking tamoxofen instead. She said all her patients were being taken off the arimidex as it had been proved that women on tamoxofen were doing better than those on arimidex. I live in Scotland and the way she spoke I assumed it was everyone affected with BC not just us choochters up here.

When I took arimidex I did suffer with sore joints and tiredness, with tamoxofen I am not half as sore as I was and I would say the tiredness isnt so bad either.

It’s interesting that the oncologist is talking of switching back to tamoxifen. I wonder if there has been more research since the article below was published in the Lancet?! I know research results are coming in all the time but I would certainly want to know what research results prompted the switch back to Tamoxifen.

arimidex.net/Information/Switching-adjuvant-therapy-from-tamoxifen-to-Arimi.aspx?mid=22
Lancet, 5th August 2005: Data from a prospectively-planned combined analysis of two multi-centre, randomised trials confirm that postmenopausal women already taking tamoxifen as adjuvant treatment for hormone-sensitive early breast cancer are able to further reduce the risk of disease recurrence by switching therapy to ARIMIDEX [1].
Among women with early breast cancer the risk of recurrence is highest during the first 5 years following diagnosis. Therefore, following surgery, the greatest benefit to the patient is achieved by using the most effective adjuvant therapy first.
Current research now clearly indicates that 5 years of tamoxifen no longer represents the optimum endocrine therapy for postmenopausal women with early breast cancer.

Katiebelu, I think that may be true for premenopausal women, but have not heard the same said about post menopausal women. You didn’t say how old you were in your post, and may panic a lot of women with your statement.

Maybe the BCC clinical nurse specialist could clarify the position.

Hello,

Just read the last few posts and wanted to say that I am now on my last of 5 years on Tamoxifen and my Onc has said that I am going on to Arimidex for a further 3 years as tests have proved that doing this have proved beneficial in keeping the cancer at bay. I am 50 years old and had a hysterectomy at 42, diagnosed with low grade cancer at 46, had wle, FEC chemo and now 5 years of Tamoxifen. I am pleased that at least there is another 3 years of medication(probably won’t say that if the side effects are awful)

Hazel

Katiebelu - I am currently having severe hip, feet and hand pains and my GP has suggested I stop Arimidex for 3-4 weeks to see if the pain stops - now almost 3 weeks and it has diminished. I have been on Arimidex for 4 yrs. I don’t understand your dr’s remarks about tamoxifen being better than Arimidex as I saw a Professor of Endocrinology in Jan this year,who has a specific academic interest in the side effects of Arimidex and he advised my bc surgeon I should continue with Arimidex and Alendronic acid, being the optimum treatment for my osteopenia. GP said he will refer me to an Oncologist (mine discharged me after chemo and rads 4 yrs ago, and retired last year) to see if they can prescribe anything other than Arimidex. I had lymph node spread, and the surgeon and endocrinologist both feel I need something to prevent recurrence.

I am wondering if tamoxifen could be prescribed? I only had it for 2 months before my onc changed me to Arimidex.

Liz.

Hello,

It may help to know that oncologists will tailor a person’s treatment plan based on the characteristics of their breast cancer, whilst considering the persons other health factors. If a person is experiencing changes in their health and /or side effects of treatment it is important to discuss these with your medical team. Often the best person to talk to in the first instance is your breast care nurse, she can then make an appointment for you to see the oncologist if appropriate.

If anyone would like to talk in more detail about their issues then please don’t hesitate to contact our freephone helpline on 0808 800 6000

BW’s

Tara

Clinical Nurse Specialist

Just to clarify, I was 37 when I was diagnosed and the cancer had spread to the lymph nodes. I was still having a period then so I must have been post menapausel - I never know if its pre or post !!

Didnt mean to panic anyone but that was what the doctor told me and tamoxofen is loads better than arimidex in that joint pains and tiredness is not so bad, for me any way.

Hi,

I’m new to this forum so hello to you all. I’ve been on Arimidex for a year and I’m fed up with the tiredness/lethargy/weakness that I feel. Everything is such an effort since i started taking arimidex. I realised the other day that I had more energy when I was having FEC chemo than I do now!! I wondered if anyone else is going through the same…I would love to talk to someone who is. MY GP is good but seems to kind of ‘play down’ the side effects…my onc at the hospital said that Arimidex makes you feel crap so he at least agreed. Also I’m in the middle of a chemically induced menopause which doesn’t help matters one bit!

help!!!

Sheana x

Hi Sheana.

I have been looking at this site for a while but have never felt like making a contribution til now but the words ’ tiredness/lethargy/weakness sort of leapt off the page. That’s me to a tee. I’ve been on Arimidex for 20 months and the fatigue has never got any better. My doctor has no answers and mutters things like …well, your body had quite a pounding etc. etc. it might take a while. Kind but not really helpful.

I’ve come to the conclusion that this is what it’s going to be like while on this drug, which in my case will probably be as long as for ever, so I had to ask myself which I preferred; tired or dead and tired wins.

I’m sorry if this is not a very positive sounding post but actually I am happy with my choice. I’m lucky enough not to need to work and have a very supportive family. I go with how I feel so on a good day I do a bit and on a not so good day I do not much at all. I enjoy my life and try not to wish it was different. Still stinks though, this cancer stuff.

I hope you aren’t feeling too bad today. I’m happy to talk but am a bit new to this posting lark so am a bit slow.

Nicola

Hello…

I have been taking arimidex for 18 months - and the side effects come and go, so it was great to see tiredness/lethargy/weakness!! At the mo I am also being troubled with back pain - seems worse when I lie down- so sleeplessness is also the order of the day. I excercise at the gym three times a week- and this seems to aggrevate a headache that extends from the muscles in my back…There is just no justice here! The great thing is opening this site and finding out that I am not alone…
Thanks for sharing ladies - I do feel better for reading the previous posts.

Gill

Nicola,

AL LAST!!! A kindred spirit…if you know what I mean???

I want to try and explain how I feel so please tell me if you understand…by the way, I work part-time which I manage ok as it’snot physical. Anyway, if I potter about I’m not to bad but even then some days the thought of doing anything seems overwhelming…awful. I can sit and look at the housework or garden and KNOW I should get off my arse and do it but I just can’t get motivated.
The worst feeling is though when I’m rushing, say in town…my legs just dont have any strength or energy. I feel soooooo weak. I was never like this before, I was the one first to the top of the stairs or walking up a hill etc…now, I have to drag myself up. It’s awful.

Do you relate to any of this?

Sheana x

I’ve been on it for about 11mths now but hate it. I have flushes, joint pain, viginal dryness, as well as tirdness, lethargy etc etc. I do occasionally have really perky days (in my head) but always have the joint pain. Sometimes just want to pack in all the drugs but too scared.

Irene

Katiebelu just to clarify my onc told me that tamoxifen is better for pre menopausal (women who have not yet gone through menopause) that is why you were probably changed to tamoxifen as you are only 37 - have looked at some of research and it seems to support this. however he did say they may change me over after 2-3 yrs to Arimidex - not sure I want to after reading some of the side effects - have not been too bad with the Tamoxifen