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Need Positive Letrozole stories please

28 REPLIES 28
Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi Judy,

Hope your aches and pains have resolved and the culprit isn’t letrozole . The road to recovery isn’t a straight one is it ?  Would be interested to know if you find anything interesting on the course and hope it helps  . Good luck ❤️

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi Sue , 

nearly 4 weeks in and just some hot flushes. Fingers crossed. Hope it’s still good for you too ❤️

Sue A
Member

Re: Need Positive Letrozole stories please

I have been taking letrozole Cipla brand for 2 weeks now and no side effects so far.  It may be a bit early but any serious effects happen quickly so I believe.  Like you I needed to hear positive comments as I was very worried about taking it.

I would say give it a try not all have the awful side effects.

Good luck x

  

Judy H
Member

Re: Need Positive Letrozole stories please

Hi Sculptor1

Not a joining inner!  Love it - no I am not either.  I have had several times in my life where I have needed surgery including several operations on my face after a kick from a horse.    I have always licked my wounds so to speak and then got on with life blasting through to the other side - probably not always the idea route but on I go!

But this has rocked me completely and it was my husband who said - "actually you know all that help and brochures that were offered to us that you just filed away - well for the sake of both of us I think you should take another look".    I have yesterday been put on the Moving Forward Course as I am not having any other treatment except the Letrozole and I am looking forward to accepting that it is me that this has happened too!   I am missing work too - I work outside and hope to resume sometime in December although the wound on my back is still very painful and not fully sorted out - so I can see some issues ahead.     Good luck with your onward journey and keep in touch.   I woke up this morning, aching all over, sore and stiff - so is this the Letrozole having a chuckle that I thought I was doing OK!!!!   Who knows - I am trying to get some level of fitness back - so I am hoping I just over did it yesterday but watch this space!!!   Thank you for your reply xx

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi Judy,

thank you for your feedback, the more positive letrozole stories the better. You sound to have been taking letrozole just a little longer than me so we are doing this together. I am not usually a ‘ joiner in er ‘ , but am surprised at how much re-assurance I am getting from this feed, perhaps I should join a group after all.  You are absolutely right when you say it is a new life we are about to lead. It’s something I hadn’t appreciated before. I thought that I could blithely have the surgery , then radiotherapy then take the tablets and return to my old life. The slowly dawning realisation that this wasn’t exactly how it works was quite a shock. It seems that there is always going to be a new milestone, a new goal to achieve. What I thought that this was just a bump in the road to be driven past and forgotten, is turning into a series of roadworks stretching into the horizon and I need to accept it before I can move on. Having said that I am still one of the lucky ones so not complaining, just vocalising.  In the meantime , having recovered from the surgeries I feel fantastic and am eager to get back to my studio and my work, which I love. Frustrated at the delay in starting radiotherapy but… it will soon be done and will get back to my new normality. Please let us know how you continue to be on letrozole, it’s really helpful. Best wishes for your continued recovery, big hugs ❤️❤️❤️

Judy H
Member

Re: Need Positive Letrozole stories please

Hi Sculptor1

Sorry to hear you have had a bad time - the whole process is so scary and indeed I am beginning to realise it is a new life I am to lead, a bit different from the one before diagnosis.

I started on Letrozole about four weeks ago.   I suffer from Fibromyalgia so I am very concerned about joint aches and pains increasing.  My GP said regardless of side effects I must take the drug which is a bit scary.

So far I can honestly say I have not really had any side effects at all.   I know it is very early days and I think it will take a while to accumulate enough to cause any issues - but so far so good.  I can keep in touch as I go forward to let you know if my situation changes.  Please let it stay as it is now as I can cope at least with this - although struggling with lots of niggles from the extensive surgery - but that is another story!

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi Helzie, 

thank you so much for your positive feed, it is very encouraging. Have been taking Letrozole for nearly 3 weeks now and although it’s very early days so far so good, just the occasional small flush after my evening meal. It was so good to hear your experience, have my fingers and toes crossed that it will be the same for me. Sending you all best wishes for a continued good health, hugs, ❤️

Helzie
Member

Re: Need Positive Letrozole stories please

Hi there,

My view is you won't know how well you'll tolerate it until you start taking it! I heard a lot about side-effects ie joint pain etc before I commenced treatment and I can say, after 5-years I never experienced this or many others I've read about, for that matter. My hair/eyebrown have gotton thinner but this has been a very gradual process. However, I think this is small price to pay - I would feel much, much worse if I had a recurrence. So al things considered, I would say I tolerated it very well. PS Like you I scored 8/8 oestrogen +. Also started on Accord brand but have periodically had others when it's not available. The pharmacist once explained once that this one is more expensive than the others and they don't always have it supplied to them.

Good luck with whatever you decide! 

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi SMH1954

im glad you’ve got some information that you feel is helpful. Making these decisions is not easy so information is important. Good luck and good health with whatever you decide. Big hugs ❤️❤️

SMH1954
Member

Re: Need Positive Letrozole stories please

@Sculptor1  As it happens I’m undecided again as the oncologist ran ‘my numbers’ through Predict which indicated that taking AI’s would only give a 0.9% increase in my 10 year survival rate. She took a lot of time to discuss the pro’s and cons which of course I appreciated. I’m taking a little time out to think about things. 

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi Sandpiper,

Yes I did get my hair cut and coloured and it has helped a lot. We locked down very early because of other problems I have so hadn’t seen a hairdresser for two years. Getting this done has given me a huge boost, not only the way I look but also now ( because I’ve had my COVID booster and flu vacc),  I am getting out of the house into that fantastic big wide world out there. I had forgotten what that felt like!! My hair isn’t quite the colour I want yet as the hairdresser couldn’t get all of my natural colour out at once , but they will next time. I am drinking a good amount of water now so as well as doing me good my skin looks much younger too , so both my hair and my skin are making me look so much better which in turn makes me feel better and more lively.
 As you say it’s not just the physical that matters. Despite my anxieties about a delayed start to radiotherapy , the upside of that is that it has given me a few weeks where I have no appointments and no doctor or nurse telephone calls . It has been full on since I found the lump in august but this respite has been glorious. I know I still have the radiotherapy to come ( and that’s not scary , just a reminder of the condition), but this few weeks is a reminder of what life will be like when the high intensity care is done and I can get back to ordinary life.  We have started planning again, we have found a campsite in France with log cabins for rent and which accepts a dog as part of the package, can’t tell you how much that has lifted my spirits. The thought of the freedom of the open road with my best beloved and our dog, the sunshine, fresh baguettes , the sights and the smells, having that to look forward to …  well I feel fit to burst, I’m very happy.   Once the expected radiotherapy fatigue has resolved I plan to plan more too.  Even small things too, like making decisions about which pencils I need for my next drawing, makes me feel more like me and less like someone who is defined by breast cancer. 
hope you can find your inspiration soon too, even in the small things. No doubt I will still have days where I’m too tired to talk , that’s natural, but we will be better and we will be ourselves again . Let us know how you get on, x

Sculptor1
Member

Re: Need Positive Letrozole stories please

Wishing you lots and lots of luck, fingers and toes crossed for you. It’s always the uncertain that makes you anxious and unable to settle so I’m glad you’ve made a decision and a plan . Let us know how you get on with them and I shall do the same x

SMH1954
Member

Re: Need Positive Letrozole stories please

@Sculptor1 

Thanks for the update on your early experience of Letrozole. Great to hear things are going well just now - 🤞 for that continuing. Do let us know please. 
I have an appointment to discuss radiotherapy and letrozole this afternoon and from what I understand will come away with a prescription for that. 😳

I’ve pretty much decided to give it a go - wish me luck. X

Sandpiper
Member

Re: Need Positive Letrozole stories please

Hi Sculptor1,

Glad to have helped and glad you're doing okay on letrozole now that you've taken the plunge - accord is the brand I have the majority of the time. Hope you continue to do well. 

Did you have your hair cut and coloured as you said in your reply to me? Sounds amazing. I'm impressed, as well, that you're able to get back to your sculpture work in your studio. 

I'm doing well physically but lacking in inspiration and drive still.

Take care

Sandpiper

x

 

Sculptor1
Member

Re: Need Positive Letrozole stories please

Good morning SMH

good luck to you too, I am now three weeks post op from the extra ‘cavity shave’ I had so we are healing together. I was reluctant to start taking letrozole as you know but the radiotherapy service where I live is really struggling for capacity . I won’t be able to start radiotherapy until beginning of December (and that’s only a provisional date), which will be twelve weeks from my lumpectomy date. I’m not complaining because I know that there are people a lot worse off than I am but I am understandably anxious about the delay. Therefore I decided to start letrozole as soon as possible to help give myself some kind of protection whilst I wait for radiotherapy. I have been taking it for just over two weeks and so far so good. Bearing in mind what other people have said about letrozole making them feel sick and dizzy I decided not to take it in the morning. I normally drive about twenty miles to my studio in the mornings and didn’t want to feel queasy or dizzy whilst doing so. I understand that other people who have taken it at night have had night sweats and having been through all that once already with the menopause ( am now 70), I didn’t want to do that again. So… I take mine at 5pm with a small square of flapjack. So far no problems. The non-Letrozole associated nausea that I’d already had for months seems to be diminishing ( could just be coincidence but I am nevertheless grateful for it), and I’ve not had any dizziness either. I have noticed a small flush after eating my evening meal but probably only noticed it because I’ve been looking for it. So far no weight gain, in fact I’ve lost 5lbs, have been trying to eat less but more healthily. I know that oestrogen is stored in fat cells so am trying to get rid of some of those to help myself too. I think the timing of taking them is good so far, it’s suiting me and has the advantage of not interfering with having to fast for other tests too. It’s early days but so far so good. I am ‘giving them a go’ and have my fingers and toes crossed that I get no side effects. I hate taking tablets but am also risk averse and I want the best prognosis I can get as I still have a lot to do and achieve. Am happy that bone density scan has been scheduled and will be done at intervals to monitor whether Letrozole is having an effect on my bones. If it is I am told that there are measures that can be taken to help with that, so I feel confidant that I am being appropriately cared for on that score. Oh yes, I am taking the ‘accord’ brand Letrozole. I see from the forums that different brands affect people differently, so far ‘accord’ seems to be ok for me. 
I wish you luck in your decision, it’s not an easy one but it’s personal to you and we are all different. I hope I’ve been of help to you either way . 
lots and lots of luck to you going forwards, big hugs to all of us ❤️❤️❤️❤️

SMH1954
Member

Re: Need Positive Letrozole stories please

Just wanted to wish you good luck. I’m three weeks post op - lumpectomy- and am seeing the radiotherapy team on Wednesday this week. I too am very worried about taking Letrozle and it’s been interesting to read the replies to your questions.
I wish you well - good luck to us all x 

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi Sandpiper, 

thank you so much ❤️❤️❤️ I really really appreciate your positive story , it’s made me feel that’s it’s possible to take letrozole and not get the crippling arthralgia that some folk are bedevilled with. I haven’t had a bone scan yet but am told that it’s in the system , and am waiting for a phone call from radiotherapy to organise a planning session date. Trying to move forwards positively so have booked to get hair cut and coloured , not been to hairdresser for two yrs so treating myself to a beautiful pale lavender coloured shiny Bob. That should bring back a bit of a sparkle !  Hope you continue to improve and stay well , take care, big hugs ❤️

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi lacewing,

thank you ❤️ My BCN is lovely but implacable. I asked her if I could speak to my oncologist and she said I didn’t have one. I understand all the drug mechanisms ( I was a nurse for 30yrs before retraining), but couldn’t get my BCN to understand that I was asking why I needed to take a drug that decreased my oestrogen levels if at 70yrs I don't have that much oestrogen. Her reply was that I obviously had enough to grow breast cancer (paraphrasing). When I asked if I could have bloods done to ascertain my present oestrodial levels to the answer was no. So… I’ll either get it done privately or just throw in the towel and be a good girl. I understand that there are great financial restraints on our nhs at the moment and I wouldn’t wish to add to that burden by asking for an unnecessary investigation if the outcome is likely not to be affected, especially when I can see with my own eyes that other folk have greater needs and are having a much much worse time.  Anyway … feel I’m making a mountain out of a molehill so, onwards .

big hugs ❤️❤️

LaceWing
Member

Re: Need Positive Letrozole stories please

Hi @Sculptor1   I notice that you say you haven’t got answers to all you questions from your BCN. If you need more answers, then you could return to her or, as I did, approach the pharmacist to get a detailed explanation. 😊 Best  wishes to you. 

Sandpiper
Member

Re: Need Positive Letrozole stories please

Hi Sculptor1,

Your diagnosis and treatment sounds similar to mine - am a couple of years plus further down the road than you are now. I was very thankful not to need chemo, am not sure how I would have coped with that.

Just to say, I haven't had any side effects to letrozole at all - no joint pains etc.  I need to take a bone strengthening tablet weekly (alendrotnic acid) and daily calcium/vit d supplement. This is because I was diagnosed with osteoporosis and osteopenia (low bone density) a few months after starting the letrozole. Bone density scans are recommended at the beginning of taking letrozole and every two years after when on  letrozole. My bones are getting stronger now and no side effects to that medication either. My GP referred me as the hospital hadn't mentioned it. Bone density scans are not scary at all, so don't worry about that either. It's all a lot to take in - going from being healthy and then having to get through all this longer term treatment.

Hoping your radiotherapy goes well. I had 15 sessions, which seemed never-ending, but you will get through them. I think that a lot of centres have condensed the number to 5.  I had a mild skin reaction (Aveeno cream was good) and fatigue which lasted a couple of months, so rest and don't overdo it. I did find it all quite weird and surreal. Then all of a sudden, the heavy duty treatment is finished and it can leave you feeling at a bit of loss. Do continue to take good care of yourself if you feel like this - it takes a while to recover both physically and emotionally.

Sandiper

x

 

 

 

Sculptor1
Member

Re: Need Positive Letrozole stories please

Thank you so much lacewing, I really appreciate hearing about your experience. I saw my BCN thus lunch time. Haven’t got answers to all my questions but she has given me the confidence to go ahead and try it, with the knowledge that she is always there for me if I run into problems . Picked up the tablets today and resisted the urge to call in at the canal side on the way home and Chuck em in. BCN said she would prefer me to start on them today but accepted that I needed some normal me time before commencing, we agreed on two weeks. So now I need to be a grown up girl , put on my big girl pants , pull em up tight and get on with it. Nurse also said that although there are no guarantees, most people in her experience tolerate letrozole well . So hear goes . Lots and lots of luck to all of you on this journey, big hugs ❤️❤️❤️

LaceWing
Member

Re: Need Positive Letrozole stories please

I was diagnosed with breast cancer in May of this year, followed by mastectomy and SNB two weeks later.  I was started on Letrozole at diagnosis. So, I can't comment on the effects of Letrozole longterm

When I saw my oncologist and discussed the way forward. He (and I) agreed that radiotherapy was right for me.  I declined chemotherapy and he was fine with this.  So my adjuvant treatment is to have 15 sessions of radiotherapy (to start next week), continue with the Letrozole for five years, and have six monthly infusions of Zoladronic acid which is intended to reduce the amount of calcium that is lost from the bones (which the Letrozole can cause) and help calcium levels in the blood return to normal.  Of this approach, he said that the Letrozole may be of most benefit to me. I've had a bone density scan, and I take calcium and Vitamin D each day.  

I feel good and the effects of the Letrozole for me are a bit like having a second much much milder menopause.  So far, I do not have any additional aches and pains other than those I can get at my age (71) sometimes. 

My story is a positive one and my oncologist was very happy to explain the benefits to me.  Please speak again to your oncologist and get him to explain the benefits and implications to you.  Age may be a factor in deciding on beneficial Letrozole treatment.

Hope the radiotherapy goes goes well.  

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi poppy,

I don’t think the test is done as a run of the mill one, and they might decline my request but… I need to know . I have only seen surgeon so far , am seeing BCN tomorrow and she wants to give me a prescription to start straight way. Since talking to her I have decided that I will see her anyway and tell her that I want to delay medication until after radiotherapy so I only have to deal with one thing at a time, and importantly I don’t confuse radiotherapy side effects with letrozole side effects . It’ll also give me a chance to ask to talk to an oncologist before taking the tablets. I can’t think that I can have so much oestrogen still circulating at 70 ??  It’s maybe that I’m just having a terrible two paddy, always did have trouble ‘doing as I was told’ 😉

Cumbrian Lady
Member

Re: Need Positive Letrozole stories please

I did not know nor was offered a test for 'circulating oestrogen levels' very interesting.
One thing I have learned here is how the treatment we are offered varies so much depending on where we live.
I am not complaining as my treatment went ahead through all the covid lockdowns, but I do seem to have sort have had the 'basic' package - probably because of covid and hardly any face to face meetings with the consultants.

I will ask about that test 😀

Poppy xx

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi kitkat,

thank you so much,  every bit of information is helping me and the more positive the better, it gives me hope that I can take the medication without necessarily feeling ill with it. I know I should take it, and I don’t want a reoccurrence ( although nothing guaranteed even with medication). I will ask to talk to oncologist and get baseline values done , ( yes you can get circulating oestrogen levels measured), . Then I’ll give it a go and see, nothing ventured ….. many thanks,  take care of yourself, all best wishes for a good recovery, ❤️❤️❤️

 

Kitkat23
Member

Re: Need Positive Letrozole stories please

Hi Sculptor

My ER was 7/8 and PR 4/8 .....I am 56 ....for me this is a recurrence....last cancer was 3 years ago DCIS ER 5/8 ....I was taking tamoxifen and still got a new primary BC so for me there is no way I would decline the letrozole.... the alternatives terrify me....and if I ever get another recurrence or secondaries I need to know I have done all I can.  bUt this is me.....this is how I work.....and I am not you.
I look at my 3 grandchildren and think I want to do everything I can to give myself the best chance of seeing them grow up.    But I completely understand that we are all different.

Like Poppy, letrozole hasn’t made my life unbearable....my hair is growing fast and furious since finishing chemo last year....I haven’t gained any weight.  I have itchy skin, I get joint pains and am very stiff in a morning and I get lots of hot flashes and am often fatigued....My sleep is also not good....but then that could be down to chemo/rads .... who knows 🤷‍♀️.  When on tamoxifen....I soon found out that the brand makes a massive difference to side effects.....I was happiest on accord brand so when I moved onto letrozole I asked my GP to specify accord brand on my prescription and this is what I always get.

i have 6 monthly biphosphonate infusions which not only reduce the risk of bone mets but also protect your bones against osteoporosis.  I have 6 monthly bloods....my cholesterol rose in the first 6 months from 4 to 5 but is now back down at 4.7. .....I am prescribed adcal ( vitamin D and calcium supplement) and have these bloods 6 monthly too......my calcium levels dropped during chemo but since being on letrozole have been fine.  My vitamin D levels are quite low but we’re before I started chemo...every few months I am prescribed a ‘mega dose’ for a couple of weeks.   The oncology team keep a good eye on me and this is reassuring.

i have an ectopic heartbeat....but developed this during chemo. I’m unsure whether there is a test which will show your levels of oestrogen.....maybe you can ask....I had 2 bloods tests 8 weeks apart to determine my menopausal state.....before commencing on letrozole.

Some days I feel 100...but others I feel more like me....I even climbed cat bells in the lakes in summer which I thought I wouldn’t be able to do.

I wish you well in making your descions....take good care

Sculptor1
Member

Re: Need Positive Letrozole stories please

Thank you so much Cumbrian Lady. ❤️ I am a reasonably active 70yr old sculptor. I had two invasive tumours with high grade dcis in between the two, total size 9.9cms. Both tumours were 8/8 oestrogen and progesterone positive so an aromatise inhibitor should be good for me. I also worry about osteoporosis especially as I broke my ankle last year, I also have an aortic stenosis which isn’t quite ready for replacement so side effects like heart failure worry me too. I think I need to speak to an oncologist , which I haven’t been offered to do so -as yet. I was wondering if I could get some baseline readings for cholesterol, bnp ( heart failure indicators), and my current circulating oestrogen levels before I start treatment. It makes sense to me to make sure that as a 70yr old I have oestrogen levels that can be reduced. I wondered if , just because there are receptors in the cancer, I have enough natural oestrogen to feed them anyway, being over 20yrs post menopausal . Bit like there being a bus stop but if there are no buses running the stops are irrelevant. Maybe I am overthinking it . At any rate I think I need to ask. However you have made me feel better about taking it if I have to so thank you for that . Big hugs xx

Cumbrian Lady
Member

Re: Need Positive Letrozole stories please

Hi
I started letrozole in April at first I found it hard was taking the tab in the morning and struggling. I changed to evening and that has helped a lot.
Over the months I have been on it my body has become accustomed to it - true it has slowed down my hair growth (which I do find difficult to accept) and when I get hot my skin itches and prickles like little hot pins being stuck in - but it passes very quickly. I do get the old hot flush but these have also settled down.
I do worry and ask questions about the drug, especially over the bone-thinning problems at 64 this is something that concerns me - but for me, it all had to be weighed against cancer returning (it could well do) but I would hate to think it was because I refused a drug - right or wrong - who knows.
I do not think there is a definitive answer we are all so different in how we cope with ALL the treatment, not just letrozole.
All you can do is go with what works best for you talk it over with your team (if able) mine were not very forthcoming with help/support over hormone medication - it was more a 'here is your prescription' start it ASAP .
If you are asking has this medication made MY life unbearable - then NO it has not, somedays are not as good as others, but I also think/feel that is an accumulation of all my treatment, chemo, surgery and rads plus at 64 the body takes longer to heal.

I wish you lots of good wishes in your decision it is a hard one to call one in which only we can decide.

Hugs and more hugs
Poppy xx

Sculptor1
Member

Need Positive Letrozole stories please

Hello.  I am shortly to begin radiotherapy then follow up with 5yrs letrozole. After reading up about letrozole am now feeling reluctant to take it . I know I should because my tumours were 8/8 oestrogen and progesterone positive and it’s the sensible thing to do. Has anyone on this forum had a positive tale to tell about letrozole please ?  Has anyone experienced no side effects at all. I would be very grateful to hear from you as it will impact my decision a lot. I think I naively thought that now the cancer has been removed I can put it behind me and move forwards, it doesn’t seem like that’s the case especially if letrozole side effects are a big problem. Many thanks in advance and good luck to all of you trying to recover and move on .