Letrozole good stories?

Thank you Phoebe. I have been told I’m to be put on one from Sun Pharmaceuticals (Ranbaxy UK). have made a note of what you say re Crescent and Accord. Thanks for replying Love Tulip x

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Best wishes and hoping your experience of letrozole is positive. Take good care. Xx

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Hi Tulip
I swapped from Sun Pharmaceutical to Accord due to severe joint pain. Avoid SP

I was on it for two years ( I’m 75) and apart from initial hot flushes for a few weeks and a bit of stiffness in hands and a little hair thinning I had no bad side effects - I was quite tired on it but basically I was fine . I did have the Accord brand .

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Hi @tulip29 've been prescribed Letrozole for 7 years and have now been on it for about 18 months with 5 months interruption during the chemo. One positive is that taking Letrozole before surgery did shrink my tumor from 32 mm on it’s highest dimension to 19 mm over a period of about 6 months, so taking it does make me feel safe! As for side effects I’m not noticing anything significant. Aged 62 now, I had hot flushes before diagnosis and I cannot say they are any worse now. I have no joint pains only some aches around the side of the surgery especially the lymph nodes clearance, but that’s nothing to do with the Letrozole. As for the “invisible” side effects of such as osteoporosis or high cholesterol I’m practicing yoga most mornings which is weight bearing and hence good for my bones, also keep an eye on steps counts and nutrition. I’ve also been prescribed a biphosphonate (Ibandronic acid) that needs to be taken first thing in the morning followed by half an hour of not eating and being upright, so that’s the time I use to silently learn my classical repertoire. The most difficult aspect of Letrozole are the multiple trips to the pharmacy to make sure my prescription is ready on time!!

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I started this morning am hoping I’m a good story.

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I was on similar drug for 5 years - regular exercise, walking, swimming seemed to ward off muscle and joint pains for me. I wish you the best for this step of your journey

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Hello again everyone, Just want to say an enormous thank you to you all for sharing your stories and advice which is helping me to feel a little less nervous and not so alone. I hope more people will post as every piece of anecdotal evidence is like gold dust to me and so much more valuable than my oncologist’s generalisations! Still keen to hear from people who have been on it over 5 years or told they must take for ten. Also interested in frequency of these bone density scans as they haven’t been offered to me at all. Tulip x

Hi tulip

Bone density scans are carried out every 2 years. You should be offered one at the start of your treatment so they can compare. Mention it to your oncologist, or your gp can also request one.
I was originally asked to take letrozole for 10 years, but because of bone thinning , I was switched to tamoxifen after 4 years. Hormone treatment tends to be for 10 years.
Sue xx

I’ve been taking Letrozole for 18 months now (Accord brand). I’m 64 & had already struggled through the menopause. I’d been on HRT for 4 years in my 50’s, which helped me to continue working, but I fear probably contributed to my Stage 3 BC.
When I started on Letrozole, the insomnia and night sweats returned with a vengeance, so my GP suggested trying a low dose of Amitriptyline. I take 10mg along with my Letrozole about an hour before bedtime. It’s worked a treat for me, I get a good nights sleep and if I do wake up, I can get back to sleep.
I had a large tumour, at high risk of recurrence, so I feel taking the medication is essential.
As others have said, keeping fit and active really helps with the stiffness, and I rarely take painkillers. I like walking & swimming, and do some strength work in the gym to help with bone health. Most gyms & trainers seem very keen to help if you explain your goals. I’m not fanatical about my diet, I’m just careful not to gain weight and act quickly if it happens!
Thanks so much to everyone who has contributed to this thread, and best wishes to you all XX

Hi there ive been taking Letrozole for nearly 7 years now. Like you i was very apprehensive about taking a daily pill but i was high risk recurrence so i listened to my oncologist and did as i was told! It took me 2 or 3 trys at different brands as it seems they do make a difference but theres not one brand that suits everyone. My side effects are minimal some stiffening of joints particularly in hands but some of it im sure is age related and hereditary. Im 61 and do the best i can with my diet and exercise. I had a DEXA scan before starting on Letrozole and ive only had one other scan since. All was fine with my bone density. A slight reduction but nothing the medics were concerned about. Again part of the aging process. It does make me feel much more confident taking the Letrozole in terms of reducing any recurrence. There is currently a problem with the supply chain of the drug so you may not have so many choices in brands. ACCORD seems to be the one readily available at the moment but unlike a lot of ladies posting on this forum i reacted to that one! So we are all different. Ive settled on Sun pharmaceuticals at the moment after being on Femara for 6 years. So far all good. So good luck with it all x

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I took my first letrozole yesterday evening. Nothing to report so far. I hope it stays that way. I haven’t had Dexa scan yet, but I will be seeing onc for first time on Friday. Hopefully it’s in the plan x

Hi there, Hope all went well at your appt today and that the Letrozole is not affecting you too much with unwanted side effects. Although my surgery was a few days before yours I am still waiting for the pathology results, for blood tests, and for my DEXA scan which is not until 17 November, hence no Letrozole for me as yet. It’s good that your team seem to be getting on with things in a way that mine are not! I guess my local health trust are just overwhelmed with so many patients. Take care love Tulip x

HI isitreally me. Just wondering how you are getting on with the Letrozole? I started taking mine 4 days ago with fear and trepidation! So far so good but its only been 4 days. I am taking the Sun Pharmaceuticals brand. My post surgery histology has changed from HER2 positive to HER2 negative so now have another dilemma re Herceptin Y/N? Also cannot have zolendronic acid as I don’t want the infusions and no water soluble weekly tablet is available. Dexa scan booked for Friday. Hoping all going well for you. Love Tulip x

Hi Tulip

I’m 3 weeks in. I had slightly achy knees for a couple of weeks but that seems to have settled. I’ve just mentioned to somebody that I’ve just emptied my vacuum bin and there is definitely more hair in it.
My 1st onc appointment was a bit of anti climax. Just went over pathology result and confirmed they will be sending my samples for oncotype testing. I thought they would do that right after op, not 5 weeks later. Another onc apt this Friday. Hopefully will have the info I need.
I have asked bcn about dexa scan since nobody has mentioned any to me. They didn’t seem very concerned. They said it should be done within 3 months of starting letrozole. Seems to defeat the object to me. I don’t know anything about zolendronic acid. Another conversation I haven’t had.
I hope you remain side effect free x

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Hi Tulip I was on letrozole for 5 years, I found yoga and regular exercise helped with aches and pains, it really does! Also try different brands as that can make a difference also.
Yvonne

Hello ladies,

Thanks for all your comments and advice - really helpful to me, I took my first Letrozole this morning, with a heap of trepidation !

I’m just a couple of weeks post mastectomy (I’m 64, grade 2, lobular, no lymph node involvement) and have been prescribed Letrozole for 5 years. My consultant very keen that I take it and stick with it to keep cancer reoccurrence at bay.

So despite my concerns I’ll be giving it a good go and keeping :crossed_fingers: for few side effects.

Really interesting to hear that different brands seem to have different effects, you’d have thought the active ingredient would have the same effect whatever the brand, wouldn’t you - I wonder why there seems to be such a difference ?

I’ll keep a watch on that though as my first prescription, got from the hospital pharmacy, is the Sun Pharmaceutical brand and it doesn’t look to get rave reviews here :smile:

I wonder if the brand will change when I go to the local chemist instead - or if the NHS budget is for Sun and that’s it, we’ll see !

Thanks again for all the info and experiences, I’ll update how I get on, in the meantime great to hear from others undergoing same treatment.

Hello bee2, Good on you for giving it a go. I’ve been on it for 3 months now. Like you I was prescribed The Sun brand from the hospital pharmacy and now the chemist gives me Accord saying that’s all they can get. Of course everyone is different but my side effects kicked in after about 6 weeks - insomnia, dry vagina and its best buddies stress and urge incontinence. Gp has prescribed non hormonal vaginal moisturiser. Fixing the dry vagina fixed the urinary issues. Initially I took the tablets at breakfast time but now I take them at night. I don’t take it on a Sunday as I am a non conformist! I hope with all my heart that you will be able to tolerate the Letrozole and wish you all the best going forward. Love Tulip x

Hi Tulip,

That’s really interesting - my doc said try it in a morning in case of hot flushes so they don’t disturb sleep time, but if the hot flushes don’t give me a problem then try night time and sleep off the first eight hours !

She said it didn’t matter what time of day really and just find the one that suited me best.

I hadn’t considered vaginal issues, thanks for the tip off.

I am heartened by your Sunday relapse … I was thinking of sneaking off every 14th day :joy: good to hear someone else playing truant too :innocent:

Love, Bee 2

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Hi to all. Great reading your stories. I have been on Letrozole now for 5 months. It has not been as bad a I thought it would be. Yes, I get the hot flushes, but they are not too bad and only a few minutes at a time. I take the pill around 9pm, so get the hot flushes over with before I go to bed :grinning:. They are ok at night thankfully. I have had Sun Pharma, Accord and now Amarox. I find the Amarox to have the least side effects so far. Get some joint ache’s especially hips and shoulder. Go to the gym twice a week which seems to help with that. No vaginal problems thankfully. Also on calcium tablets twice a day. Am awaiting results of dexa bone scan this week. Take care all x