Breast cancer
posted by Josephine
31 March 2014

Letrozole/Femara

Last reply: 05 May 2014 14:47

Hi again
I took Tamoxifen for a year and didn't find the side effects too bad. I could blame weight gain on it but that would be helped along by eating too many goodies ( as in poor me, I deserve a cake) Image removed.

I've been changed to Letrozole/Femara for 5 months now since I had my ovaries removed. I'm finding the joint pain and stiffness really bad. At first, I didn't realise it was a drug side effect and I thought I was developing some form of arthritis. My feet and hands don't work at all in the morning when I wake up and I have to shuffle across the floor to get to the loo and keep squeezing my hands to get them moving. I have to lean against the wall and go one step at a time to get down the stairs. I probably sound like I'm 87 but I just recently turned 47! The stiffness wears off after about a half hour but as the day goes on it all starts up again especially if I sit down for a while. I love walking but if I go for a walk and then sit down, I feel like I've run a marathon with the pains in my legs.
I spoke to the oncology team after 2 months and was advised to take a Glucosamine supplement but I haven't noticed any improvement. More recently, I spoke to the Oncologist and he said if I can't tolerate it that I can go back to Tamoxifen. It seems up to 30% of patients react badly to it. But, he said Letrozole was better for me by a few percentage points. So I'm afraid of dismissing any percentage points that will keep me well but also don't know how I can put up with feeling like this for 5 years.
Has anyone had a similar problem with letrozole/femara and have any solutions?
Thanks, Jo x

6 comments

Comments

commented by wilmaone
01 April 2014

01 April 2014 20:20

Hi Josephine

I was the exact same as you on femara.the joint asnt muscle pain were crippling I could only manage 6 months on it went back crying to oncologist.I am now on exemestane for the last 5 months have review at end of this month.The joint pain is not as bad but not great I find my feet and ankles are worst effected closely followed by shoulders and neck.mornings are definitely worst but I can't sit for too long either.I have to say it was a relief to read your experience on femara as I was really thinking that I was getting a bit neurotic!!

For me on this one I'm really finding the hair thinning my biggest problem(I haves a lovely thinned patch right at front of parting).my options are like you to go back to tamoxifen if I can't tolerate this.

So nice to know when I'm coming down stairs in the morn one by one sideways as the pet turtle whizzes past I'm not on my own!!! Don't know about you but I feel as though my feet will snap.

Hope all is well with you otherwise and your feeling good.

Xx W

PS I went to north for femara too.

commented by Active
02 April 2014

02 April 2014 20:41

Hi,

I have been on Letrozole about 6 weeks and am also stiff in the mornings. I keep wondering whether unexpected tiredness , mood swings and an increase in nightsweats are because of the drug. It is striking how little information there seems to be on the effects of oestrogen withdrawal. Last October I had to go off HRT in less than 3 weeks having been on it for 10 years and now any oestrogen left is being eradicated by Letrozole. Books on menopause are not much use as they recommend foods or supplements containing oestrogen to alleviate symptoms.
Any advice from people who have been down the Letrozole/Femara road before? I already walk almost daily, wear layers of clothes, keep bedroom cool, drink less,avoid caffeine and spicy food and at age 62 have had hot flushes and night sweats for past 5 months.

Active

Active

commented by LindyLu
03 April 2014

03 April 2014 23:19

Examesthane girl here too. On it as part of a clinical trial. Am over 4 years on it now and have to admit that the joint pain has reduced considerably.

I will admit that during the first 12 maybe 18months I would wake in the morning feeling less like a 41/42 year old and more like a 90 year old. For other back related reasons from an old injury I started a pilates class and have to admit that a few month into pilates I noticed the achy pains first thing in the morning had reduced. I don't know if it was just time or Pilates but I probably feel more like 50 year old (than a 45 yr old!).

As for the night sweats, they have all but gone. However I have some triggers that bring them on like red wine and/or choclate especially in the evening.

Lindylu

commented by Kathleen
12 April 2014

12 April 2014 21:29

Josephine!

How lovely to hear from you. Image removed.

How are things now? I often think of you as you went through so much while you were having your treatment as well as getting lymphodema afterwards. I hope all is going well for you now.

Hugs

Kath

commented by Josephine
04 May 2014

04 May 2014 22:47

Hi all
Apologies Kathleen, I never replied. I'm good thanks except for the medication! So I stopped taking letrozole last week. I went crying to the GP about how old and decrepit I feel. She convinced me to try tamoxifen again and see if the aches and pains will lessen. No change yet but I suppose its too soon to tell. I also spoke to the breast care nurse and she said a huge percentage of women find letrozole very hard to take. She also said that symptoms seem to improve spontaneously after 18 months but that's exactly a year more for me! I'll give you all an update in a few weeks.
Jo

commented by Kathleen
05 May 2014

05 May 2014 14:47

Hi Josephine,

Thanks for your news. I hope Tamoxifen will be easier for you. Image removed.

Concerning stopping femara, I was told that it takes at least a month for these types of medication to fully leave the body as they trigger certain reactions and behaviour in the liver that take quite a while to stop. It's early days yet for you.

Take care

Kath

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