Arimadex or Femara??

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I was diagnosed in June, had mastectomy followed by chemotherapy (on Tact 2 trial) to be followed in January with radiotherapy, herceptin for eleven months and hormone therapy. With regard to the hormone therapy I have been asked to consider a clinical trial taking either Arimadex or Femara for five years. If I don’t join the trial then I understand that I shall be offered Arimadex as the standard treatment for post menopausal women - I’m 51.
I have been reading others comments on Arimadex which have worried me but I haven’t seen any on Femara. I would be grateful to hear of any experiences of Femara to help me make my mind up.
Thank you to all those women, and men, who post on this site. You have given me such strength over the last six months.

Margaret

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Hiya Margaret

I’m also 51 and was put on Femara in October, so its all a bit new, but so far not too bad. A bit achey on first moving around, but that wears off and I’m better for keep moving (need to lose the weight anyway!) and a slightly dicky tum for the first couple of weeks, but to be honest that may have nothing to do with the Femara, I was still getting over chemo, so anythings possible.

Good luck
Cheers
Anne x

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Hi Margaret,

I have been on Femara for just over a year. I am on a trial for 5 years. I have just had my 53rd birthday. My only very slight problem has been a bit of stiffness on getting up which soon disappears as I move about. No complaints or concerns. Don’t even think about it.

Good luck.

Margaret x

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Hi Margaret,

Have been on Femera for 8 months.
Stiff achey joins esp first thing, but wears off as yo move about, so no real problem there.
However, have had 3 lots of AB’s in 4 weeks for recurrent cystitis, a rarer side effect of Femera I understand. Trust me! May need a small gyne op to sort this out.

Mabel x

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Hi Margaret

I started Femara just after Easter and took it for the whole of 2 weeks. The side effects were instant and my worst nightmare (sorry if this worries you).

I woke up with a headache the morning after taking my first pill and it didn’t go until 5 or 6 days after stopping them.

Hot sweats were horrendous even my legs were wet through.

Pain in my joints compared to having a hair line fracture last year. Even my fingers and toes hurt and I had difficulty in holding a hardback book.

Stiffness - I couldn’t get upstairs only practically on my hands and knees - and it took ages.

I couldn’t walk very far - I struggled to get to the library - round the corner and on the flat. 150yards and I was exhausted yet at Easter I walked the whole length of Lord Street at Southport, and more besides.

I had palpitations, my blood pressure was up, one of my concerns before taking it was this and because of family history of strokes, and already being on medication, was being monitored.

My sex life was zilch - it was so painful- and that was with Sylk. It worked before and it does again.

I couldn’t sleep so was not functioning properly - even the sleeping pills didn’t help.

I felt as if I had the shakes all the time.

I was more frequently in tears and was depressed. I even eyed up what tablets I had and was wondering how many it would take to have a successful suicide bid.

Constipation, indigestion, heatburn, and a few other small ones that paled into insignificance.

The saving grace was when I caught a glimpse of myself and noticed that my stubble didn’t look the same. It was definitely thinner at one side and I had a bald spot about the size of a 5p piece right at the front. I freaked out and went hysterical and didn’t take another one. My GP thought I did well to take them for 2 weeks.

When I told the onc he said that it can cause menopausal like symptoms. My menopause was nothing like that, if it was I wouldn’t be here now. If the next 5 years were going to be like that I didn’t want the next 5 years. I am too frightened to try Arimidex and am taking my chances. At least I have a life (don’t know how long it will be in comparison) and am enjoying it.

I still feel stiff and achy but it is improving and the hot sweats are only 2 or 3 a night.
However I still have the bald patch and I am convinced that if I’d continued taking them more hair would have disappeared permantly.

I think mine was a severe reaction and if you decide to take part in the Femara trial hope you will be OK.

Marilyn X

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I have posted this on behalf of Terry
Kind Regards
Katie

My wife has been on Femara since September. Just hot and cold flushes to report. She is driving again and is much more awake than with Xeloda.

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Thank you to all of you who have posted answers to my query. I have read the information sheets about thes two drugs but nothing beats the voice of real experience. Quite honestly I feel between the devil and the deep blue sea! Both these drugs give some women dreadful side effects. Marilyn, you have really suffered with the Femara - my heart goes out to you. I do , however, feel I have to accept one of these drugs as my oncologist told me that taking hormone therapy for 5 years would increase my chances of non-reoccurance in the next 10 years by 10%. With young children I feel I have to take every treatment going!
Please keep the comments coming. It’s really helpful.

With thanks,
Margaret

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Hi Margaret

I have only been taking Arimidex for a couple of weeks and so far so good. Nothing adverse to report. Like you I was worried by the threads on here, but it has been fine, and I hope it stays that way. I am 55 and post menopausal by the way. Noone mentioned the possibility of Femara, so at least I wasn’t faced with a choice!

Let us know what you decide and good luck

Dilys
x

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Hi Margaret

I have been taking Femara since September. About 5 days after I took the first one I started to get aches and pains in my right hip at the top of the leg bone. It felt very strange and weak, a bit like the feeling you get when you’ve been sat in one position for too long and when you get up your legs feel as if they are going to give way. Walking was laboured and I went up and down stairs on all fours. I couldn’t put too much pressure on my right leg or turn quickly - anything that involved hip movement. This lasted for about a week and since then I have been fine apart from an occasional twinge.

Another thing I have noticed and I suspect it’s the Femara and the subsequent loss of oestrogen is that my skin has become very dry (everywhere!) and I feel a bit like a prune. Like Dilys I am also 55 and post menopausal so the dry skin could be due to that too. But, I seem to be fine with it and I keep my fingers crossed it stays that way.

Good luck with whichever you decide to go for.

Jibby X

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I’ve been taking both Arimidex and then switched for a short period of time to Femara (6 weeks). The side effects on Femara were far worse then on Arimidex - I had permanent severe headaches and flushing nearly continuously - up to 10 times a night and every hour during the day. So went back on Arimidex. (see my other thread) , but am about to see oncologist to discuss me coming off these after 2 1/2 years, as my symptoms have been very similar to Marilyn’s. As we all have said before, at the end of the day we all have to make up our own mind and it so depends on our age, life style, family committments etc. I certainly feel that quality of life comes over quantity and I am jsut so fed up with this dreadful disease - first dx in 1999 and then 2nd dx in 2005. The last 2 years + have been dreadful and my whole life is being affected now.

Wish me luck tomorrow , girls, when I will have to make my point with the oncologist!

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I have been on Arimidex for about 7 weeks and have been lucky by the sound of it. My knees get a bit sore but my oncologist recommended glucosamine and I have also started to take cod liver oil tablets. No hot flushes really. I hope I’m not speaking too soon!!

Good luck with your decision
Anne

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Following an original diagnosis in 1990, I was further diagnosed in 2002 aged 51 with a grade 3 tumour and secondary cancer in the lymph nodes on the opposite axilla. I have been taking femara for the past 5 years and am finding that the side effects are becoming more pronounced. My hair has become very thin and my scalp increasingly obvious. I managed this initially by using volumising shampoos and changing my hairstyle so the layers grew out. However I feel I need now to be investigating wigs and fortunately Breastcancercare have just started Headstrong in my area. For me emotionally, the hairthinning has affected me far worse than the mastectomy.

The oncologist prescribed fosamax for bone thinning, but as I didn’t want to take this, (wasn’t keen on the possible side effects) was happy to let me manage the problem with calcium and vitamin D tablets.

I have become more anxious and depressed over the past 5 years and have had counselling in addition to antidepressants. I’m unsure if this is related to my secondaries diagnosis, the femara or my age - 56. Probably a combination of all three.

My oncologist seems uncertain as to how long I should remain on femara. Has anyone else been on this drug for longer than 5 years?

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Thank you all for your responses to my query. I have to say I am really concerned about the side effects of both these drugs having read your replies and comments on other threads. The prospect of taking one of these drugs for the next five years really terrifies me. I feel I have lost touch with the real ‘me’ and I’m worried about ever finding it again.
The comments about thinning hair also concern me. I managed to hang on to a reasonable head of hair through chemotherapy with using the cold cap, so I don’t want to loose any more!
I have my next appointment on the 12th. when I have to let them know if I wish to participate in this trial. At the moment I’m inclined to say no thanks, but I would like to discuss if there are any alternatives to the Arimadex other than Femera.
Thanks again and take care everyone,
Margaret.

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I have been on Femara for the best part of 5 years, with no side-effects that were any worse than the Tamoxifen that I had been on for years (which, for me, were entirely liveable-with)… Arimidex and Femara are very similar drugs. Any drug which cuts down on the oestrogen in your body will give you the side-effects of having less oestrogen, such as hot flushes and vaginal dryness, basically menopausal symptoms. Some people get them worse than others just as some people get worse symptoms at their natural menopause than others. If your cancer is oestrogen-positive, reducing the oestrogen in your body is an extremely important way to reduce the likelihood of recurrence or slow it down.

The other thing is, you could start either of these drugs and then stop it if you really can’t bear the side-effects; they are all reversible.

Good luck!

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I’d be interested to know if there is any scientific evidence that hair grows back normally after stopping aromatose inhibitors. Also do the bones regenerate themselves naturally. I really hope so.

I think it is important to try and weigh the side effects against the efficacy of the medication. For me with my terminal prognosis given 5 years ago, I certainly think that femara has prolonged my life and that with secondary cancer, I would almost certainly have died by now if I hadn’t been on it. So on balance I am probably glad I did take it but I am 56 and in a different scenario than younger people with primary cancer.

So what I think I’m saying is please don’t just come off the drug but discuss it with your breast care nurse or oncologist.

Wendyx