I’m just coming up to 6 weeks on arimidex and so far all I have noticed is I get extremely hot at times, whereas before I felt a bit warm due to menopause, now I can literally wring a cloth out, make up and the hot sweats are not a good look…got my chill pillow and been trying a lady care magnet for the last week, think maybe things are improving but not sure if it’s for real or just wishful thinking.
So it looks like I should be taking calcium and Vitamin D alongside the arimidex. Thanks for telling me ladies. The medical profession certainly hasn’t! I go for a bone scan on Wednesday (19th), and to my GP for the results two weeks later… so I will be discussing this with him. I will also be asking whether I really really need to take arimidex given what I am reading here.
I have been taking it for six weeks now. No joint pains yet but I am getting occasional hot flushes (although not as bad as I did during the menopause), My night sweats are, however, horrendous when I get them (once or twice a week). I have to change my nightdress; and the pillow and bed are drenched. Lucky for me, I can just roll over to the other (dry) side of the bed. I had night sweats during the menopause; but nothing like this.
Don’t want to sound moany as I know I am very lucky not having chemo (although 15 rads); and I have to say this forum is brilliant, informative and supportive.
Hi Ladies just thought I would post to see if it helps any of you ladies to make up your minds abour Arimadex. I have been on them 4 years next January. I can honestly say I havent had any side effects at all. I had a bone scan before I started on them and was told slight thinning of the bones but nothing to worry about. I had another bone scan done 4 weeks ago and nothing has changed. I take my tablet as soon as I get into bed because when I first started them I thought if I have any side effects I will have them while I am sleeping. When my onc prescriped these pills he said to me they were magic little pills so I always keep that in mind. After my chemo when I first started the pills every little ache I had I thought god its them pills but it was just my scar healing and probably getting older. So any of you ladies who are having second thoughts Id say give them a go as I may not be here to-day without them.I was back at work full time 9 months after having masectomy chemo and still working and guess what no one new I had had anything wrong with me. I had just moved from England moving back to Scotland after 29 years so this was my first job after treatment. I was only back here 1 week when I found the lump I didnt even have a doctor here had to register then wait for appointment and thought god I want to go back to England to my old doctor whom Id had since I went to England. My husband took me to register and the doctor I got was fantastic I had my masectomy 4 weeks later then 8 sessions of chemo as soon as I got hair I got my job I was only there 3 months and was made up to Supervisor and still enjoying Morrisons and still no one knows I have only one boob. Sorry ladies Ive gone on a bit but it was good to get this off my chest and thanks for listening. If you need to ask me anything about Arimadex please do and I will try to helpand thanks for listening Linda x
Hi linbob- what a helpful posting.
I think it is very easy and inevitable when we have a life- threatening disease to ascribe every little ache and pain to after-effects or side effects of our treatment - when in all probability some of these will prove transitory -and some may be due to ageing or other conditions that we had before BC .
I know that my hot flushes are the result of Arimidex but … I already had arthritis in my shoulders and knees and it is quite possible that the increased pain in my shoulders would have happened anyway- and my knees have NOT got any worse.
I too understand Arimidex to be a wonder- drug and so will put up with it with as little moaning as I can manage and be grateful !
I’m glad I started this discussion as, from the comments, it seems SEs are widespread; and I must question how they arrived at the statistics in the little “list” enclosed with the white wonder pills. For example, “more than 1 in 10” have “hot flushes”. What is “more then 1 in 10”. Is this 11 or 99? No mention of night sweats (although a MacMillan fact sheet I got did mention this) and hot flushes and night sweats normally go together, in my experience. I am just getting disillusioned with my whole experience of cancer treatment. I feel like we are all statistics. Don’t ask questions, do what you are told and then we can produce stats next year saying the survival rate is up. No mention of the dopwngrade in quality of life for that survival.
I don’t want to be negative here; but do you understand where I am coming from ladies?
Last week, I went to a MacMillan sponsored make-up session “Look Good…Feel Better”; and I did feel amazingly better and more positive afterwards. I would highly recopmmend it. However, it was interesting to note that the pre-session DVD included a female consultant or oncologist (I can’t remember which) talking about this charity initiative. She had developed BC and said she had not realised until her diagnosis what we are all going through. Enough said.
Linky
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I’ve been taking arimidex for about three months now, and find my shoulders and hands ache and are very stiff; getting up from seated position or off the ground, or out of the bath are also difficult, as I don’t seem to have much strength. I’m wondering if this is something which I might expect to improve with time. My GP gave me calcium tablets to take because I had told her I had gone onto a dairy free diet shortly after my surgery - one side mastectomy . All through the chemo, each time it was administered, I had a lot of pain and discomfort in the arm and side where the lymph nodes had been cleared, and so this sort of held up my getting the mobility and comfort back into that arm. The other arm though, because of the injections of chemo has very hard veins, and is probably more uncomfortable than the damaged side now.
The radiotherapy seemed to go off without many noticeable side effects - just tiredness. The arimidex has made me feel like an old woman - stiff and sore. I try to move as normally as I can, and correct myself if I find I’m creaking along. I don’t think I would ask to be taken off arimidex, because the doctors tell me I am very lucky it was a hormone receptive cancer I had, because they can give me this arimidex, but it isn’t a happy thing to end up aching and therefore constantly reminded when all you want to do is put it all behind you. I read that we should be prescribed a bone supplement - this has not been mentioned to me. There seems to be a big difference in the quality of understanding and caring we receive from our oncologists.
Anyway, I felt like I had been so strong, and really helped all the people close to me throughout the treatment. However it’s now, when the really scary stuff is past, when I feel I can afford to look around me again, that I’m struggling. I’m struggling with things like feeling like an old woman, having grey white hair (although it looks quite distinguished!), having only one breast, and feeling less sexually womanly because of this.
On that point - vaginal dryness! Sexual intercourse which I have only very recently begun to think about again, is impossible. Where before all of this I was menopausal, and already had to use lubricants to be able to have sex, now it is too painful even with the use of lubricants. I feel that being able to feel I was attractive in that way would help me with my feelings about losing a breast, but it seems it’s not to be. Any suggestions, or anyone out there who can offer some hopeful and helpful thoughts or ideas? Erin
Dear Erin,
Welcome to the forums. I am sure you will soon have a lot of replies from other forum members. Breast Cancer Care have a publication called “Sexuality, intimacy and breast cancer”, which you may find helpful. I have attached the link below.
There is an excellent article by Dr Peter Harvey about life after breast cancer, which you can find on the Cancer Counselling Trust website.
Please remember that you can also give our Helpline a ring for information and support. They are open 9.00-5.00pm on weekdays and 9.00- 2.00pm on Saturdays. The number is 0808 800 6000.
Take care
Very best wishes
Janet
BCC Facilitator
I have been on tamoxifen for the last year and a half, but after a review my consultant told me that I am to go on Arimidex in October for 3 years. I did some research from oncology journals and various reliable online publications, one of the side effects that is not welcome is the thinning of the bone. To overcome this, prior to start arimidex or femara, patients are to have bone density scan. If bone density is found low, then a treatment of bisphosphonate or other similar drug to be given before taking Arimidex/Femara, but unfortunately this kind of drugs “may” produce other SE/contra indications such as osteo necrosis of the jaw.
On my last visit, the consultant has booked me to have a bone scan before switching to Arimidex or Femara. She advised me to take preventative action and have all my dental work done/uptodate, before taking bisphosphonate or similar if the bone density is low. I think this is the suggested protocol.
Ideally I would like to come off the drugs, but I am not sure what percentage or recurrence statistic for those not taking drugs for IDC grade 1, ER & PR +. In any case taking arimidex for 5 years only protects us whilst we are on it. The question is what happens after we finish taking tamoxifen/arimidex or femara?
I share the anguish of those who are experience the side effects of Arimidex, but hopefully with the help of a positive thinking, we can decrease our suffering (mind over body). Good luck.
Dear Miss Piggy
That’s interesting, I too was IDC, Grade I and ER PR plus. It is also interesting that your consultant asked for a DEXA scan before you started arimidex. Such was not volunteered to me. But,I am a squirrel for information; and I too had done my research. So I asked the consultant about a DEXA scan. Response, not necessay! Well< I didn’t believe her, went to my GP and had one. Only prob now is that it was not before I started arimidex (2 months in, but near enough I suppose) Results next week.
Ah yes, by the way, for those of you who may be interested, it is all about budgets.
I have been with my GP for about 30 years; and he is honest with me (I think). I was somewhat confused when the onconolgist confirmed that I needed arimidex and told me to go and see my GP. So, being me, I asked how he would know what to give me; and she said “I will write to him”. OK, so I then asked my GP, why the hospital could not give me a prescription (since they are the ones saying I need it!!!) with repeats/follow-up from him. Aah, well, if the hosptal prescribe it, it comes off their budget. So the hospital saved £65 (that’s what arimidex costs for a month’s supply - one of the most expensive drugs apparently).
So now you know. Work all your life, pay your subs and who is going to pay for it. My GP is happy to pay for arimidex and he also had to pay for my DEXA do0ne at a private hospital because the local NHS can’t do it). So I am very lucky with my GP but what alottery.
Linky
Sorry Miss Piggy
Forgot to say, you look wonderful in your photo. Sorry, I don’t have one. Don’t know how to do it - I am a technophobe
Linky
Linky - If you have any photos stored on your computer that you would like to use, go into ‘profile’, then ‘edit details’ and at the bottom click on ‘browse’ to find where that photo is stored - click on it and the photo will load after you click on ‘submit’. Hey presto!
Ann x
I was diagnosed with breast cancer 2 1/2 years ago. I received chemo/radiotherapy and a years worth of Herceptin.
I have been taking Arimidex and a Bisphosphonate for the past 2 years. Before starting the Arimidex I was given a DEXA bone scan and was found to have osteoporosis of the spine and femoral neck. As a result they put me on the Bisphosphonate.
I reluctantly take this medication but can honestly say I have not noticed any side effects. (I take the Arimidex before bed).
I have concentrated on eating things that help bone health, plus getting plenty of sunshine and increased my exercise. I started Zumba a year ago as well. This increased my overall fitness level and now have much stronger leg muscles. I have just had a second DEXA bone scan and my osteoporosis is now osteopenia. I am so happy with the result so will continue doing all the above.
I have heard that hot flushes are helped by eating Sage. I haven’t been bothered by hot flushes though since starting treatment.
I hope this helps anyone that may be worried about side effects of treatment. I know we are all different in how things affect us. Good luck to all of you xx
Would just like to add another point to this discussion - I too
have been taking arimidex for 2.6 years - three months ago my
prescription was changed to anastrozole - the side effects were
so bad every joint ached and I felt weepy and generally unwell.
I was lucky my Doctor changed me back to Arimidex and things have
greatly improved. I have had two DEXA scans one when I commenced
taking Arimidex and another at the two year interval both of these
were satisfactory for my age!! I have recently been getting pains
in my thumb joint (where it joins the wrist)and the Doctor sent me for an X ray the diagnosis is osteoarthritis in the joint and I have been
told there is nothing that can be done. The DEXA scan did not reveal
any abnormality. Because my DEXA bond scans were normal I do not
take anything other than the Arimidex.
Pat