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Scared to start Letrozole!

10 REPLIES 10
quarteter
Member

Re: Scared to start Letrozole!

Thank you so much ladies for all your feedback! I have decided that I will start the tablets, as my tamoxifen is just running out, and see how it goes...can only try! I would never forgive myself if I had a recurrence and hadn't at least tried them.
Thanks again, Liz x

hazelmary
Member

Re: Scared to start Letrozole!

Hello
I didn't have a dry mouth whilst on Tamoxifen(5 years) but got it big time after about 6 months on Letrozole, was then diagnosed with Burning Mouth Syndrome. Now on last of 5 years of Letrozole so looking forward to this particular SE going!
My aches and pains started about a year ago, mainly stiffness which do wear off but I do get "stuck" if standing or sitting in the same position for very long.
Everyone's side effects vary so much but the aches and pains seem to be the most regular of them all.

Hazel

rhondacat
Member

Re: Scared to start Letrozole!

Hi Quarteter, I have just started on Femara for 5 yrs another name for (letrozole) early days only 3 months, I was also scared to take it, as I had read all the horror stories on it, but so far so good no side effects. I am feeling better each day as it is only 4 months since finishing chemo, and my bones ached from this, & I thought it may last on Letrozole but it hasn't, feeling great.Taking vit D daily Very importand for bones. Also vit C, cod liver, & immune support. Rhonda x
Lulu34
Member

Re: Scared to start Letrozole!

i was on tamoxifen for 5 years and changed to letrozole 6 months ago... was absolutely fine to start with but after a few months started to get some aches and pains..... worse first thing in morning but eases during the day... worst affected are fingers, ankles and hips. i have also found my aches are worse when its hot... genuinely thought i would be stiffer in the cold or wet.... but i started to notice it on holiday in the algarve and obviously its been a great summer so when i came back and its been nice my joints have been worse been worse.

i also had a dry mouth when i was on tamoxifen and use something called biotene oral balance saliva replacement gel from my GP.... which helps a lot.... and have actually found its not as bad since changing to letrozole.

Lulu x
Lynnq
Member

Re: Scared to start Letrozole!

I have been on LETROZOLE since last November. Diagnosed with secondaries almost as soon as initisl diagnosis So no other treatment apart from surgery...........bilateral Mx........... I have had 3 tumour marker tests which have all shown a drop ...... And my last scan showed a significant reduction in both bone and peritoneal infiltration. Achey legs are my only SE so for me that is fine........hoping they'll continue to work for years!!!!!!!
bertie
Member

Re: Scared to start Letrozole!

Hello there,
i have been on Letrozole for 4 years now, negligible side effects, when I first started I used to get slight stiffness in some joints which wore off as the day went on but that got better after a while. I was on tamoxifen for 3 and a half years then I developeray secondaries in my lung so I was put on Letrozole and it has kept me stable for 4 years so from my point of view it is an excellent therapy, it is a very good drug for oestrogen positive ladies. Do hope it his helps.
Take care
Marina x

Rhianphil
Member

Re: Scared to start Letrozole!

I have been on Letrozole for over 2 years and have had no problems apart from a sore mouth. I hadn't made the connection til I read Hazelmary's comments. I wake up a during the night with a very dry mouth,- no saliva at all!! Will talk to my BC nurse in September.
carrie35
Member

Re: Scared to start Letrozole!

I had this very same conversation with my onc (see thread Tamoxifen for ten years?) and I voiced concern re changing and she is happy to keep me on tamoxifen for 10 rather than changing despite that I am post menopause. For exactly same reasons joint pain and bone thinning etc

Guest user
Not applicable

Re: Scared to start Letrozole!

Hi
I've been taking Letrozole for 5 years and I've had no joint stiffness at all. Everyone is different, so I would certainly give it a try.
My onc has just given me another 5 years on these pills and I'm more than happy with that.
Take care.
Mal
hazelmary
Member

Re: Scared to start Letrozole!

Hello
I have been on Letrozole for over 4 years after 5 years of Tamoxifen.
I didn't have any problems re aches and pains until earlier this year. I take 1000mg cod liver oil and 3 tablets of glucosamine daily which has helped. Usually it is stiffness which wears off after I get myself going.
My problem was with my mouth which has been diagnosed as Burning Mouth Syndrome which started 6 months after starting Letrozole, apparently 1 in 3 post menopausal ladies get in but I think I am in the minority on these forums.

I'm sure you will get more posts re Letrozole.
Hazel

quarteter
Member

Scared to start Letrozole!

I was diagnosed in 2007 and after a mastectomy, chemo and rads am just coming to the end of my 5 years on Tamoxifen. I have been fine on Tamoxifen, but now am dreading taking Letrozole! I am very anxious about possible joint stiffness as I am a musician and worried about the impact it might have on my playing and teaching. I am 46. I've had a bone-density scan which showed above average which was great news. Encouragement needed please!