Hi,
I’ve been on Tamoxifen for 2 years with no serious side effects, tolerated pretty well. I had flushes but they settled down after about a year.
Had my annual check up with onc in late May/june and he asked if I was through the “change” and I told him I didn’t know as I had the mirena coil in which had stopped my periods.
He said Well at 53 and going through chemo you must be??? so I’m changing you to aromasin as trials have proved that it decreases the risk of recurrence in post menopausal women, see you in a year.Ok.
Now, I was going on holday so I thought I would continue with Tam as I had quite a lot left and didn’t want to risk any side effects until after my hols.
So pleased I did! The night I came home from hols I changed.(2 weeks ago) The first week I was ok. Then I started to feel tired, fell asleep after tea which is not me at all, as this year I have been dieting and exercising and lost 37 pounds and have felt very fit! Then my shoulders felt heavy and ached and even my toes hurt. I thought I was getting the swine flu (quite a few members of my family have been affected) but then I thought “the tablets” So I got the box out and there on the front of the packet is the warning"Do not operate machinery or drive if affected by tiredness" . So I read leaflet and it doesn’t say if these effects wear off. I feel awful. As tired as when on chemo! So I’m giving it a month and then going to see gp.
Now, can a gp change meds, or is it down to onc? Has anyone else felt like this on aromasin?
Anyway, I’m going to ask him to test my menopausal status too.
My next appointment at hospital is with surgeon, 28th sept and I’m off on holiday 1st Oct, so want to be feeling ok for that!
Any feedback would be much appreciated,
Kay.
Ps. the flushes are back too, but i can live with them
Hi Kay,
I changed from tamoxifen to amorasin 2 months ago, i feel awful, tired all the time, can’t concentrate, can’t sleep, the worst flushes i have had in the last 4 years, memory loss and aching body!! i have been to see my own GP who diagnosed depression and anxiety, a side effect of the amorasin!! I am going back to see my onc about it as my Gp felt it would be better for them to change the tablets if needed… i go next week so will let you know how i go on. Although i suspect i am just going to end up on anti depressants anyway!!
i had a test which showed i was post menopuasal before going on them
Marg
xx
Hi Kay & Marg
I also have just changed from Tamoxifen to aromasin after having a blood test and showing I am post menopausal.
I have just been to my GP today with all the same side effects you both describe. After finishing chemo,rads and herceptin I was getting back to feeling myself again.
Started exercising lost the extra weight and even skied for the first time, thought I was sort of moving on. Now six weeks after starting Aromasin Im struggling driving as my legs ache so much, my neck and shoulders ache constantly, have a bad headache day and night, and feel very tence and uptight, housework and shopping leave me ready for my bed.
My Gp is referring me back to the consultant as its up to him to change anything.
I will let you know the outcome, but reading your post has helped as you know any ache etc does bring more worries
Rachie
Marg And Rachie,
We all sound the same don’t We!
Thanks Rachie, I didn’t know if GP could change meds, obviously not.
Don’t worry that the aches are cancer related, I’m sure it’s the meds.
Marg, you probably dont need anti depressants, just maybe a change to Armidex or Femara.We are depressed because these tablets are making us feel awful!
We have worked so hard to get back to “normal” and then they give us these meds.
I feel less tired today,and a little more upbeat, but will it last?
Keep in touch
Kay xxx
Hi Rachie and kay,
I have been back to my consultant who suggetsed i go back onto tamoxifen, as i said i actaully felt like stopping the Aromasin i felt so bad. i never thought i would be so glad to be taking tamoxifen again. I also went back to my Gp who asked me to fill in a questionnaire and then suggested anti depressants. i have jusdt picked up the prescirtion and looked at the side effects, the list is as long as my arm!! It coversevrything from drowsiness, lack of sleep, diarrhoea, constipation, headaches nausea, …Do i need to go on?..Looks as if they added everything just in case!!Don’t know if i will be feeling any better!! I need to try something, i have a job and a family and i need to able to cope. i thought 4 years on i wouold feel much better, but it just seems to carry on… I have been offered counselling as well but have to make the contact with the organisation myself.
Will let you know how i go on…!!!
Love marg xx
Hi Marg
Hope you start to feel better when you change back to tamoxifen, I wasnt sure if that was an option. I go on friday to see consultant, and like you feel I cant continue on aromasin as the side effects are just getting worse, but worry if I stop what the consequence maybe. I will let you know what happens. I hope you start to feel better soon.
Rachel x
Hi,
I was given aromisan in dec 08 then was told to stop for chemo.I experianced all awfull side effects including waking every hour with night sweats and hot flushes.I was origionally (2004) started on Tamoxifen then changed to Arimidex.Hot flushes controlled by vitaman E and Evevening Primrose oil as recomended these were very helpfull but after 4 & half years they would be.2004 was breast cancer and mastectomy,2008 bone cancer.Currently on taxol still suffering flushes and sweats but for the last 3 weeks onc gave me permission to take the Primrose oil and Vitaman E,although it takes a long time to get in system will plough on.Wonder what will happen next when I finish the present weekly chemo and have more tests.8 down 4 more to go.Wish me luck I know I will need treatment for a long time but can not give in so carry on fighting.
Maureen
Hi, I started on Arimidex 31st Jan 09,(mastectomy in Nov 2008) 2 weeks after having my ovaries removed and suffered quite badly from hot flushes for about 2 months then they settled down to just a few a day but still about 6 through the night. I have also put on about 9 pounds but luckily I was always underweight so thats OK. I find that I have knee pain and general body stiffness now but I persist with walking and Pilates but I have decided that I just dont try and do the same pace or distance that I did before starting the Arimidex. I do what my body is comfortable with and that way I am not disappointed with the results. I have improved my diet considerably, cut down massively on anything sweet (these seem to trigger hot flushes with me), plenty of vegetables, fruit and filtered water. I would rather try and adjust my routine and live with the side effects for the next 5 years if it means a good chance of no recurrence. Everyone is different, just try and find what works for you.
Hi All
I have been to see the consultant today and he has suggested I change from Aromasin to Arimidex to see if the side effects improve. I will try it for a couple of months and if no change i am to go back on Tamoxifen. I asked what difference the Aromasin/arimidex made to Tamoxifen and he said very little maybe about 2%. I am also having vit d tablets and calcium tablets as bone density scan shows deteriation so while on Arimidex need to take these as well.
Hopefully things will improve as I would prefer to stay on Arimidex but we will have to wait and see.
I will keep you all posted
Take care
Rachel
Hi Kay
I’m amazed your onc didn’t check that you are post menopausal before changing you to aromasin. My friend struggled with arimadex and is now on femara and doing much better in terms of side effects. So maybe you could change to a different aromatase inhibitor. Another friend who is in her 70s was asked if she suffers from joint pain and as she does was put on tamoxifen straight away. I’m 51 now and 4 an 1/2 years since dx. I’ve been on tamoxifen for over 4 years but had Zoladex as well for the first 2. I last had a period in April so it would seem I have the joy of going through the menopause yet again!
Take care
fantan
Hi Everyone. So glad to see this topic as was about to start one re Aromasin.
Since i finished my treatment in October 207 i have been on Tamoxifen, Arimidex and now Aromasin.
I couldn’t cope with the side effects of the Tamoxifen and Arimidex and thought i was tolerating the Armidex better. Now though i am again getting the awful stiff aching joints that lead you to walk like a old lady.I am only 53.
Not due to see my Onc till Jan 2010 but as have been on the full list of hormone therapies not sure what he could offer me anyway.
I did actually stop taking the Arimidex much to his horror as i couldn’t stand the stiff joints every day. He then put me on Aromasin as my cancer was a aggressive one and hormone dependent.
Where do we go from here, is it men that design these drugs for us as they don’t seem able to bring one on to the market without some awful side effects as a consequence. Has anyone been given any drugs to counteract the side effects as at present i am taking Dihydrocodeine to deal with the joint pain.
Hi Mounties
It might be worth asking if you could try Femara.
I think all the aromatase inhibitors are very chemically alike, tho’; hence the similar side effects.
I don’t think there’s a drug for anything, anywhere that doesn’t have side effects. Some of us are more affected than others and some side effects are worse than others, that’s all. And some side effects carry more weight with the medical profession, too.
X
S
Hi All,
After going back onto tamoxifen 3 weeks ago, i feel so much better, aches and pains gone, low moods gone, hot flushes decreased, bloating gone!!
Why do they put you onto something that makes you feel so crap!?? Msu as you say be designed by a man!!
Marg xx
I’ve tried tamoxifen and femera but had local recurrences on both.
Am now on aromasin and the hot flushes are quite frequent (hardly noticable on tamox or femera) my ankle joints are very painful, especially in the mornings,and I’m not sleeping too well.
However, due to my recurrences I would worry too much if I stopped taking them.
Jackie
Hi all,
It does seen to affect us in different ways doesn’t it. My tiredness has subsided. However I had some “spotting” the other day. Haven’t had a period for 4 years because of mirena coil,which is due out in october. So tomorrow I am making appointment with gp for hormone test.Had some thoughts lately, aromasin stops all oestrogen in body, but my coil releases hormones. I expect they really won’t be able to get a true reading with all this releasing/decreasing hormones going on. Back to the spotting ,it says on here that it can be a side effect in the early days.
Jackie, my ankles hurt on morning , but not for long. Sometimes I think if you have such reaction as you the drug is doing it’s job?
Rachel,the 2% your onc quoted, does that mean if you change to aromasin/armidex you have 2% less chance of recurrence?
Marg, did you decide to take anti-depressants?
Hope you all feeling improved, blooming hormones!
Love kay xx
so i googled ‘aromasin’ and ‘shoulders’ and found this link. after 3 (uneventful) years of tamoxifen, my onco. put me on arimidex since i was now postmenopausal. i lasted 6 monoths. after excruciating pain in my knees, achy ankles, water retention, an additional 8 pounds, and depression creeping in; i called her office and complained. i was told to stop immediately. i got 2 months off, and was just beginning to feel pretty good, when she put me on aromasin. now 2 months later my knees are beginning to hurt again, the thick ‘mid-section’ and swollen fingers are back, but the pain that’s new and really getting to me is the neck and shoulder pain. it started as a stiff, sore neck and has moved to my shoulders. my apt. with my onco. is in jan,'10, i’ll try to stay on the aromasin until then so that i can say i had a year with the A.I.s - but after that, i think i’ll ask to go back to the tamoxifen. i understand it isn’t the current “gold standard” for preventing recurrence - and it wasn’t perfect, but a heck of a lot better than this!