I am 67 and have had a lumpectomy for stage 1 cancer no node involvement. I am having 3 weeks of radiotherapy.
The oncologist started me on Femera three weeks ago and having read all the really dreadful side effects and feeling horrid I have stopped taking it and decided not to take any drug that may cause long term damage to an otherwise healthy body. What is the general opinion am I being foolhardy. Also what do you think about Aspirin and its possible positive properties on breast cancer control ?
Hello Roco
I have been on Femara for nearly 3 years, was told originally that it would be just the 3 years but last year my Onc said 5 years.
About 6 months into my 3 years I started having problems with my mouth, dry and burning and after trying everything, antibiotics, thrush medication etc etc my GP referred me to an Oral Clinic who says that it is Burning Mouth Syndrome for which there is no cure just treat the symptons. It could go away at any time and this BMS apparently effects 1 in 3 postmenopausal women but I’ve not heard of many. The treatment is a drug called Nortriptyline and also steroid mouth wash. I cannot get anyone to confirm it is a side effect of Femara but all the information in the packet says dry mouth or mouth ulcers.
I have had 5 years of Tamoxifen and my stage was 2 with 6/17 node involvement which could be the reason my Onc wants me on it for 5 years.
In September I was prescribed the generic version of Letrozole(Femara) and I am convinced that the generic version make the SEs worse.
Will I elect to just do the 3 years? I don’t know. if I could cope with the side effects then I would carry on.
I haven’t had any other side effects but everyone is different, I was fine on Tamoxifen, never had a problem but there are some ladies who are having a terrible time on it.
If I was you I would give it a bit longer, you may be fine after a while. It is a big decision to take but I am sure you will get many other posts.
Hazel
Roco nobody can make you take a drug you don’t want to. The reason the oncologist recommended you had Femara was because research has shown it improves outcomes. The positive outcomes outweigh the possible side effects for most people. You could always try taking it and see if it really will interfere with your quality of life. If you decide not to have it and had a problem in the future would you blame yourself?
I have taken it now for four months and yes I am stiff after sitting too long, and I have mild flushes. I can tolerate these because I want to give myself every chance of doing well.
You might want to ring the Helpline and talk things through with them. They are so supportive and understanding when you have a “blip” or query.
All the best
Cackles
Hi Roco and welcome to the BCC forums
In addition to the support you have here please feel free to call our helpline as Cackles has suggested, they are here to offer you further support and you can talk through your concerns and feelings in confidence. The lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000
Best wishes
Lucy
I was prescribed Femara (Letrazole) - I read all the side effects and reading between the lines the best side effect was that it could stop me from getting breast cancer again. I’ve taken it for a month now and have found that my body has accepted it and adjusted and we appear to be getting on just fine. That little tablet could be saving my life and I am not prepared to take chances with that. I have had to put my life in the hands of my oncology team and so far, so good!
But…it’s your choice.
Hi
There are probably many ladies who take this with no real side effects. I took it for three months( it didn’t do the trick for me ) and didn’t notice any problem.
If your team have made a clinical case for you to have it then I would give it a go.
X Sarah
Hi Roco,
I am in the same boat - had a miserable Xmas with migraines so I stopped it while I got myself together to return to work. Now I guess I must try again. I too have been trying to weigh up the cost against the benefit and I don’t think it’s straightforward. I had a mastectomy and my grade was also 1 with no nodes. I was given a very low chance of recurrence but I gather there is a lot of unpredictability in this. Part of it is to protect the other breast as I have lobular but I think another MX would be better than 5 years of misery!
Kathy
Hi Rocco.
I started on Letrozole ( Femara ) in Sept 2011 after being on Tamoxifen for a year. My consultant did tell me at the time that I would have joint and muscle pain which I have. I struggle in the mornings with hands, elbows and feet but once Im up and moving about it wears off. I find the best thing for me is swimming and gentle exercise, I also walk a lot. I am going to be on this now until 2015. My memort isn’t that great either but I get through this with a to do list and I tick things odd as I do them. My work have been really good they also give me to do lists as well.
Hope this is helpfull. xxx
Hi there , have got some help from reading some of the other comments regarding Femara. Have been taking it for over a year and the pain in my hands and feet seems to increase not decrease. Very bad when I have been sitting and stand up, and even worse when have been sleeping. I hobble around when I get out of bed in the morning. Have spoken to my doctors who recommend light analgesic, however all recommendations are not to take them on a daily basis. Has anyone got any ideas which help them and has anyone who has had this problem passed through it whilst still on Femara? Feel bit depressed about it as have handled everything else thrown at me on this journey but am finding this genuinely debilitating. Obviously it doesn’t like my makeup!!!
Hi York12 and welcome to the BCC forums
I am sorry to read that you are having a difficult time on femara and just wanted to let you know that our helpliners are here to offer you further support and information in addition to the peer support here. The lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000
Best wishes
Lucy
Thank you all for your helpful comments…I will have to way up the odds very carefully… so difficult and making me depressed.
Any one heard about the Aspirin I mentioned ?
hello - spotted this thread this morning, but only just had a chance to reply.
I’ve been on letrozole for 8 months. The first month on femara and thereafter on generic letrozole. I was very worried beforehand having read lots on the forum about it, but I have to say, for me, so far, its not been too bad. I’m 59 (this week) and was already post-menopause. I had a WLE and radiotherapy for lobular cancer. Letrozole was then prescribed for 5 years. The first month I felt nauseous (I took it at night for that reason) and had hot flushes, night sweats, etc., but that has worn off - I get the occasional night sweat, but nothing terribly worrying. Yes, I’m a bit stiff in the morning - but then I was anyway, especially at this time of year. I was very worried about weight gain (I was trying to lose it when I was diagnosed) but have managed to hold it steady, even if I’ve not actually lost any.
I have tried to improve my diet, and I take Evening Primrose and/or Cod Liver Oil. But, most importantly for me, I’d rather have the aches and pains that have the BC come back. I was very lucky to avoid chemo, and I’m sure six months of chemo would be worse than five years of SE from letrozole. But everyone is different. The one thing I would say, is that it did take more than 3 weeks for SE to wear off, so maybe worth trying it for a bit longer - and also when you’re not suffering the insidious side effects of rads. Which for me took quite a while to fade. In fact I had Carpal Tunnel Surgery a couple of weeks ago and the post rads exhaustion crept up again. so my body is still not showing its usual stamina.
I do give myself more lie-ins than I did pre BC and generally try to look after myself a bit better. I’ll go on with the letrozole for as long as the SE remain not too bad.
This is just my experience but:
I was on femara for a year and then got switched onto generic letrozole last August. I had coped with the usual side effects of femara (not great but…) and then by November/December was suffering so much I had to go and beg my GP to switch me back onto femara. I am convinced that it made a big difference to my well-being. It wasn’t easy as my GP told me - femara costs £90 a month while letrozole costs £11 a month - but I know they have different ingredients. Anyway, I went back onto femara on December 14th and I have to say that by now I am feeling very much better with greatly reduced side effects. So…yes, I am glad I flagged it up and persuaded them to switch me back to femara. I do feel so much better and more able to cope with it again now.
Hope this helps.
X
Sometimes the leaflets cause such anxiety, I wonder if I should read them!!! I have been on Letrazole since I started rads in September. Like others, I had an initial increase in hot flushes and joint stiffness, but it is wearing off/dying down. I haven’t noticed any difference between Femara and Letrazole, but i guess i’m lucky. My surgeon said yesterday they would probably keep me on hormone therapy for life, because of “significant” node spread and the high eotrogen score and the evidence so far of the benefit. Apparently the trial (of 5000 women) was so effective that they had to contact those on placebo and offer them the real drug before the trial ended. I accepted the hammering chemotherapy placed on my body simply because I didn’t want to wake up in 5 years timei and think “I WISH I’d done it”… but it’s your body… your choice… let us know… Jane
I was initially told 3 years on Letrozole after 5 years Tamoxifen but last year Onc said it would be 5 years so I am going to ask the question why he has increased the time when I see him in April.
I haven’t had the usual side effects, aching joints etc, my SE is with my mouth and whilst it says on all the info with each version of Letrozole that dry mouth/ulcers are a SE I have now been diagnosed with Burning Mouth Syndrome which I know my Onc will say that it is not a SE of Letrozole but I started having the problems 6 months after starting it.
If I could control my SE then I would be happy to stay on it for the full 5 years.
Hazel