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Need Positive Letrozole stories please

55 REPLIES 55
PJRL
Member

Re: Need Positive Letrozole stories please

Thanks so much for our reply. I'm so sorry you had to go through all that.  I was indeed referring to DCIS, (sorry my mistake in referring to it as pre cancer). I am still weighing up the pros and cons, and have been speaking with one of the Breast Care Doctors about it.  It is such a hard decision to make.  I wish you well too. x

SMH1954
Member

Re: Need Positive Letrozole stories please

@tappin @Hi there - thanks for posting. For me at least all perspectives are valuable. I’m currently ‘resting’ from Letrozole as at about 8 weeks in I realised that I was losing noticeable amounts of my hair. The plan is to discuss options with my oncologist on the 7th of March. I already know that the hair loss as stopped - as has the pain I had started to have in my wrists. 
The radiotherapy is on consecutive days by the was - excluding weekends as another poster had said. If you’re having the 5 session regime, which is quite common now after certain cases of breast cancer, will be all over quite quickly. Mind was Wednesday, Thursday, Friday - miss the weekend and then Monday, Tuesday. Good luck xx

Kitkat23
Community Champion

Re: Need Positive Letrozole stories please

Hi Tappin.....I’m 57 now....1st diagnosis 47, recurrence at 53.... new primary on other side at 55.

My appetite is greatly reduced since the last bout.....even on letrozole....my BMI is just 19....i often eat because I know I should not because I’m hungry. 

radiotherpay occurs over consecutive days but not the weekends....I had 15 sessions .....so it was Monday to Friday x 3 weeks.

take good care

tappin
Member

Re: Need Positive Letrozole stories please

To PJRL and KitKat23,

Thankyou for your insights! How old are you KitKat 23? That was tough for you 5 years down the line!

Actually, the Letrozole side effects I was dreading haven't happened. I am now 77-just had a birthday- and was on hrt from mid 40's, and I was expecting a full blown menopause reaction! I do get the odd feeling of being in front of a fire, and have had one night sweat, but apart from that it's fine. I too take meds for BP, (had to give up the mirena coil (progesterone) and the daily oestragel),  but I have taken thryoxine for years for underactive thyroid, also take collagen capsules, zinc and selenium to help with skin and hair. Always taken vit D & C as well! I don't FEEL any different, but have very little appetite - don't have takeaways, always cooking from scratch or things i have made and frozen.

Am still a bit overweight from lockdowns, but hope this will gradually resettle itself too. Re the radiotherapy - I was told 5 days-but is that 5 days/end or 5 days for 6 weeks I wonder-will have to check, but not had a word from the BCN.  feel a bit as though I have been dismissed because I was reluctant to have the rx !. It is so good to be able to ask any question and get a straightforward answer from replies! 

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi KitKat,

I would absolutely back up everything you have said. I was reluctant as you know because as of potential side effects, but as yet ( fingers crossed) , I have have only had mild flushes. I too don’t want to be back in that chair in 5 yrs time wishing that I had taken the tablets. Neither of the choices - to take the tablets or not to take the tablets , are the choices  we want , neither come without consequences but they are what they are, sadly . PJRL just be sure to have  ALL the facts st your fingertips before you make your decision - good luck ❤️

Kitkat23
Community Champion

Re: Need Positive Letrozole stories please

Hi PJRL

it’s a difficult decision for some people.

im not sure if you are referring to DCIS? If you are this Is mostly referred to as non invasive cancer ....not pre cancer In the U.K....I say this not be be pedantic ....but would want anyone to be very sure of their diagnosis before making any big decisions.....we are all very different....and we all come from very different starting points....so I would totally respect anyone’s views but I will share my story with you.....I had 4mm DCIS 10 years ago..it was also low grade .....when removed I was told I had a 1 to 2 % chance of recurrence and given my odds then hormone therapy was not needed.....even though the cancer was ER+..... fast forward 5 years.....I was one of the unlucky Ones, even though I had been given a 98% chance of never having a recurrence., my recurrence was once again DCIS ( non invasive) but this time high grade and wide spread so I needed a mastectomy.....unfortunately in 2020 I had another primary BC .  No doctor will ever tell you you are cancer free....they will tell you that you are NED ( no evidence of disease) at that present time.....the most minute cancer particles can remain in the body for years undetected.
so I would say speak to your team.....weigh up what is important to you ( for me I would rather tolerate my side effects than live with the sheer anxiety of worrying that I had not done everything possible to reduce the risk of further recurrence or developing secondary cancer)..... I wish you well with whatever you decide.

 

PJRL
Member

Re: Need Positive Letrozole stories please

Hi, I'm thinking of declining it too!  The side effects seem awful. I had a 12mm er tumour removed. Had lumpectomy but margins weren't clear so instead of another lumpectomy, and because there was 25mm of pre cancerous cells around tumour, I opted for a mastectomy. That was 4 weeks ago. I was told last week that all the cancer had been removed and no radiation required. In effect I am cancer free. Hence the suggestion of 5years Letrazole plus injections to counteract osteoporosis has come as a shock.  My Onfo DX was 16 which is relatively good I believe.  I have followed a soya meat alternative based diet for 14 years, not realising the detrimental effects of processed soya, so am now completely changing my dietary habits. Also stopped drinking alcohol (which hurts!).... even though it was only a small glass of wine most evenings. Hopefully this will help my body to lessen oestrogen production.  I am not overweight and am usually very active although have hereditary high bp and have been on medication for years. Soooo....I am strongly angling towards saying no to the hormone therapy. It has been a hell of a scare and I feel blessed to have had the outcome I have, so far.  I wish you all the very best with whatever decision you decide to make. 😊xxx

PJRL
Member

Re: Need Positive Letrozole stories please

Hi, I had a 12mm tumour so had lumpectomy. Unfortunately margins not clear so I was going to have a further lumpectomy. However I opted for a single mastectomy, as I had 25mm of pre cancerous cells surrounding original tumour.  I have no regrets at all about the msastectomy and wam now 4 weeks post.  The Consultant told me there was no cancer left, so in effect I am cancer free, so no radiation required.  He now wants me to go on Letrazole for 5 years.  Reading the side effects has really scared me. I am 62yrs old, very active physically and not overweight. However I am on meds for high blood pressure.  I am strongly leaning towards not taking the Letrazole and being very diligent towards checking my remaining breast for any change.  They have said the hormone treatment is a "bib and braces" follow up treatment. I do feel the risk of side effects in this case, are not worth it.  xxx

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi tappin,

the Nottingham score I was talking about is the Nottingham Prognostic Index. It is an algorithm that predicts prognosis and therefore the treatment recommended to combat your cancer. It takes 3 things into consideration, tumour size, grade of cancer ( ie how aggressive it is), and lymph node involvement or not. Your BCN should be able to give you your score if you ask her. You can Google Nottingham Prognostic Index , there is information on how to use it if you want to. I’m not sure whether it includes DCIS in its parameters or whether it is just used in IDC . I suspect the latter. 
As for follow up. I think every centre has its own protocols. After surgery I was handed into the care of the radiotherapists. 6 weeks after radiotherapy finished I received a follow up phone call from that consultant to check that all was good, I was then handed back to the care of the breast team in my area. There are no plans for any follow up appointments with that team ( so no follow up call in my area), but I have my BCN telephone number and have open access to that any time I want.  I will have yearly mammograms for five years and another bone scan in two years along with 5 yrs Letrozole.

I have to say that although my BCN is very polite , she has not been exactly forthcoming with information. The information she has volunteered has been basic and replicated in information booklets. Anything over and above that information I have had to ask for, sometimes several times, leaving me feeling frustrated and a nuisance. I know that we are all different and some people have no wish to know the details, and my BCN has to cater for those people too, but a ‘ would you’ll like to know’ question would be good along with a surrendering of said information ( it shouldn’t have to be a struggle especially at a time when you feel emotional and vulnerable). So basically, no nursing or clinical information freely proffered in my case , which makes me think that my BCN is really a very well qualified administrator whose nursing skills could be better used. Perhaps a system overhaul is due ? Personally, if I know what I am dealing with I can cope with it much better. So I feel that I am my own best advocate and in order to be that I have researched extensively to put my mind at rest. Not everyone’s route but definitely mine.  I WAS offered a ‘moving on’ course , but have politely declined , that’s not the information I was seeking. 
Having said all the above , whether or not I had the information I wanted, would not have altered my treatment course, that would have remained exactly as it is. What would have altered would have been my mindset, which is very very important. However, it is as it is. So now I have put it all in a box, it’s on a shelf in the back of my mind if I want it , but knowing me it’ll stay there till it becomes dust and blows away.  
good luck with your follow up in April , have your questions ready before the call and make sure you get answers that satisfy you.  
take care, best ❤️❤️ 

tappin
Member

Re: Need Positive Letrozole stories please

Hi Sculptor1

Such a positive outlook, and am in awe of your determination! 

You gave such sensible views. Not heard of the Nottingham score at all. Does everyone get a follow up call from the BCN at the clinic? The only contact I have had is after me contacting them via email and getting a call over a week later! I have a follow up video consult booked with the oncologist in April. My lumpectomy DCIS (2mm +12mm contained was ER8/8 and PR7/8 probably because of the HRT I was on) was grade 1 and no lymph node invasion, so am waiting for a second opinion re RX. 

I can't believe I'm blithely talking what seems knowledgeably about this!  Less than 6 months ago I was totally unaware of the impact and effect a few suspicious cells could make to a person!

I am taking Letrozole. It seems different areas of the country have different protocols. It would be good to see the results of those different ways of treating people to get an overall view of how well (or otherwise) they affect the outcome.    

Sculptor1
Member

Re: Need Positive Letrozole stories please

Good morning, I’m so happy that positive stories are helping. My own update is that I’m now 16 weeks in and still no side effects from letrozole. The hot flushes are diminishing ,  I have found that drinking coffee will spark one but that was the same when I was going through the menopause 20 yrs ago, and that is a well known trigger factor. I do take my letrozole at exactly the same time every day , I don’t know if that helps but it means that the levels of it remain pretty constant, no troughs or spikes.  Last time I posted I was a week or two post radiotherapy and feeling exhausted and with pain. I am pleased to report that I no longer feel like that so the effects have been transient. I now have more energy and feel more alert than I have felt for a very long time. So…. If you’re going through post radiotherapy fatigue or are wondering how it will affect you, it will get better.  My breast is still healing inside, I had a 9.9 cm lump removed weighing a whopping 10.7 oz , so it will take a little time to be completely without soreness but it will happen. In the meantime I have full use of my arm with a full range of movement and no pain , back to normal really.  I notice that there is sometimes a question about which drug to use, either tamoxifen or an aromatise inhibitor like letrozole so ……. Oestrogen + cancer means that the cancer is fuelled by  oestrogen, it needs oestrogen to be able to grow and multiply, so if you can stop oestrogen from getting to the cancer cell it with starve to death. JaneRu you should be able to find your score on your report, if not then your breast care nurse should be able to tell you. The higher out of 8 the score is then the more responsive it is to oestrogen and the more treatable it will be by reducing its access to oestrogen.  Tamoxifen and letrozole have different mechanisms for reducing that access. Tamoxifen acts directly on the cancer cells by blocking their receptors, a bit like stitching their mouths shut. Letrozole works by reducing the amount of oestrogen you have circulating in your body, thus starving the cancer cells that way. If you are pre menopausal you don’t really want to lower your oestrogen levels as oestrogen is useful for other things too, so tamoxifen is the drug of choice as it starves the cancer cells without reducing oestrogen levels. If you are post menopausal the letrozole is the drug of choice. Oestrogen levels are  lower then in any case so lowering them further and starving the cancer cells that way is very effective. 
in my case I was initially very reluctant to take them but given my circumstances I felt I had no choice. I’m glad I did start them now.  I had a multi focal breast cancer, two invasive tumours in the same quadrant of the same breast, originating from the same source. One was just behind my nipple, the other near my chest wall, they were both 8/8 oestrogen and progesterone positive , both had lymphovascular invasion , meaning that both had invaded nearby tissue, blood vessels and lymph vessels ( my sentinel nodes were clear). Both were just under 2cms. They were 6.5cms apart and that space in between was filled with in situ carcinoma, the total size being 9.9cms. I was very lucky that my surgeon was an oncoplastic surgeon so she was able to do a huge lumpectomy and still leave me with a decent breast that doesn’t need any further reconstruction. ( she’s fantastic).  My breast cancer was scored ( as is the norm), on the Nottingham scale. At the moment if you have multi focal Breast cancer it only takes into account the size of the largest tumour and not the size of the sum of all the tumours. There is ongoing debate about this as some research indicates that the accumulated size should be considered. That would certainly have put me into a different category. Also there is research indicating that lymphovascular invasion should also be used as an independent predictor, which at the moment it isn’t. So my Nottingham score indicated that I shouldn’t be offered chemotherapy. On the one hand I was relieved on the other I was anxious that it wasn’t offered. I am an ex nurse and wanted it to be treated as aggressively as possible . So…. The reason I eventually decided to take letrozole was that I felt that if a stray cancer cell or two had moved out of my breast via my blood vessels , then I didn’t want it to set up shop anywhere else, so starving it of oestrogen with letrozole was my best option as I wasn’t offered chemo ( which I would have taken in a heartbeat). 
oh yes. About the bone thing. Reducing oestrogen will have an effect on your bone density which is why we have an initial density scan before taking letrozole to get a base level. If any bone density levels are a bit lower than they should be ( and they often are after the menopause), then you should be offered treatment, advice and further monitoring scans later during your treatment. I am scheduled for two years hence. 

Im sorry I seemed to have rambled a bit this morning, this is a long post but if it makes anything any clearer for any one then it’s been worth it. Please take care of yourselves and each other, big hugs to you all , ❤️❤️❤️❤️

tappin
Member

Re: Need Positive Letrozole stories please

Hi Kit Kat23,

golly you have been through the mill! I wonder if it is worth mentioning ages in posts as I think it would be helpful, although as you say we all start from a different place. I was told many years ago (I'm now 76) that breastfeeding reduced ones chances of breast cancer and I fed both of mine, the last one for 7 1/2 months. Never had any issues after mammos until the one in August when they found the calcifications. Have asked for a second opinion re rx as I do take the Letrozole and the odds are very small. As I said below, no aches and pains from it, sleeping well, the odd flush and one night sweat in 2 months, otherwise just the bone issue for me!  Keep positive, and giving your welcome advice too!

louby_lou69
Member

Re: Need Positive Letrozole stories please

@Sculptor1 

Thanks for starting this thread as I'm due to start taking Letrozole in a couple of weeks. My cancer is ER/PR and HER2 positive so it's a no brainier for me.

I had a lumpectomy last August to remove my 35mm stage 2 cancer, lymph nodes showed no sign of cancer. I'm just about to complete 12 rounds of chemo on the 9th Feb, then have 5 sessions of radiotherapy.

After that I continue with Herceptin injections until December and will start taking Letrozole. 

Everywhere you read about the bad and debilitating side effects but rarely does anyone talk about how their lives have been fine taking them so it's good to read all the positive stories. 

Lou x

Kitkat23
Community Champion

Re: Need Positive Letrozole stories please

Hi there 

my last ER+ cancer Was 7/8....therefore the tumour was very receptive To oestrogen.....my Onc strongly advised I take letrozole due to this. I think it’s called the Allred score....it’s should be on your hospital letters that you are copied into.

My first BC diagnosis in....the cancer was 2/8 receptive.....I was advised I could take or leave tamoxifen ......as 2/8 positive could really be classed as negative 🙄🤷....it’s all very confusing isn’t it.    I did take tamoxifen though.....but 3 years later ended up with the 7/8 tumour.

I was told any score of 3/8 and over would indicate That a hormone blocker may be of benefit but not sure if all oncs work to this.

i am very much hoping that letrozole will be more effective for me ( my Onc seems to think it will).   The side effects are not great....but nothing I can’t live with.

I tend not to go by percentages.....as they don’t relate to the individual.....I have now had BC 3 times.....the first time I had non invasive DCIS 4mm ....I was told I had a 1 to 2 % chance of recurrence....but I have since had BC 2 more times.....so when I was offered chemo at 3% benefit....I jumped at it.

but we are all very different people and come from different starting places....and I get you have to do what is right for you.

JaneRu
Member

Re: Need Positive Letrozole stories please

 
JaneRu
Member

Re: Need Positive Letrozole stories please

Hi there, I had a 19mm tumour removed last October. I had radiotherapy in December and was supposed to start letrozole. I've declined it as the additional benefit only 2% which doesn't seem worth the side effects to me, who already has joint problems. I wondered what the 8/8 means for the oestrogen? I only know mine is ER+

Thank you 😊

tappin
Member

Re: Need Positive Letrozole stories please

I am 4 weeks into Letrazole, and so far, apart from mild flush and a brief hot feeling now and then (I took HRT for so long I never experienced the menopause anyway!) and not much appetite, I'm ok. I hope I do manage to lose some of the lockdown weight I put on anyway! My sleep is fine, but I do get drowsy late afternoon! Started cooking and baking again, and now debating whether to have the 5 days of radiotherapy which has been offered. I was dreading side effects, and not happy about the bone density reducing, or hair loss as I have an underachieve thyroid anyway and virtually no body hair or eyebrows!! There HAVE to be some plusses in life!! So good to read everyone else's experience-to start with you think you must be the only one, having read the statistics, but I find it is SO common!!  Onwards and upwards in 22!! 

ritam
Member

Re: Need Positive Letrozole stories please

Thankyou Helzie. Had a mastectomy on 28 Oct - grade 3. Its stage 1 cancer as not spread to lymph nodes. Onco score 28 so need to make decision whether to have chemo but def have to have letroZole and Ibandronic acid. Think I will be declining chemo as I’m 74 and the side effects and tole on your body do seem to be brutal. Anyway been reading the thread about letroZole and your post is so encouraging. I am a positive mindset person and not looking forward to the onset of menopause symptoms again but the predict tool makes it a no brainier to take it. Thanks again. 

Aileana
Member

Re: Need Positive Letrozole stories please

Thanks ☺️ I'm feeling pretty good, my mood is a bit up and down at times, it could be the Letrozole but it could just be the whole shenanigans of it all!

I didn't have radiotherapy. I was given the option of a 5 day course but going over it all with the oncologist, given my good percentages, I decided in the end on just the hormone treatment. 

I hope you're starting to feel better and that your energy levels pick up soon. As you say it all just takes time. I hope you have a lovely Christmas, and all the very best for '22 xx

 

Sculptor1
Member

Re: Need Positive Letrozole stories please

Hi Aileana,

I'm so sorry, you sound to be having a tough time of it. I’m now 9 weeks in ( still early days),  but letrozole side effects don’t seem to be getting any worse. I finished radiotherapy 10 days ago. I had the 5 day IMRT course. My skin is fantastic, jus a little pink and a little warm over nipple and scar area. I put diprobase cream on breast as soon as each RT session was finished then 3 or 4 times daily after that. Skin needs to be cream free before each session. The radiotherapist  told me that the cream has to go into the skin ( carefully), and not just sit on the skin. I was prepared for skin reaction , which didn’t happen, but not for deep breast and rib pain I started getting at about 1 week after treatment finished. It stopped me in my tracks and woke me in the night and paracetamol didn’t shift it. It’s temporary and it will go when the radiation has done it’s job but in the meantime it’s made me feel sick and exhausted a lot of the time. I’m very impatient and I want to get back to having some energy levels so I can get on with stuff but it seems we just have to ride this one out. I hate feeling tired and sick. However , it’s a small price to pay for the rest of my life so not complaining. Just putting it out there so that if the pain and exhaustion hits anyone else then at least you’ll know it’s not just you, it’s what can happen with radiotherapy. I have a follow up ( probably telephone), with radiotherapy team in a few weeks time then expect to be handed back to the care of the breast nurses in my town. Apart from yearly mammograms I don’t expect to see them again ever unless I have a problem, which I won’t have . I’ll keep you updated on letrozole journey. I was so reluctant to take it so fingers crossed it remains positive  and I can share that with you.

take care all, have a good Christmas with your loved ones, big hugs ❤️❤️❤️

Aileana
Member

Re: Need Positive Letrozole stories please

Hi, I'm 7 weeks in on Letrozole (Femara brand). I've been doing fine apart from the last couple of weeks a bit of insomnia has kicked in (not every night) that I hope will settle down. I think I'm getting the odd mood swing too as I've had a couple of 'dips'...but that could be the after effects of everything that's happened...diagnosis, op, & onwards!

I suffer with vaginal atrophy and had just started HRT (patches) a month before my cancer was picked up on a routine mammogram. Previous to HRT I had been on topical estrogen treatment which wasn't doing much to help so was trialling a course of patches which I have to say only after a month I was feeling the benefit of but hey ho, that's out the window now. I am now using YES VM but it's not the same. I believe topical estrogens & testosterone can be used in some BC patients on Letrozole which is something I will investigate along the line.

My hair was already thinning, started a couple of years ago, which was already causing me distress so I'm hoping it won't get worse...I am browsing wigs online already though!

I have started a non-inflammatory diet (my diet was quite healthy before but have tweaked it) & have lost a stone in weight (probably a combination of tweaked diet & cancer fear!) I do feel healthier though, the small changes have made a difference.

Lack of exercise is my main bugbear at the moment, combination of weather & apathy!

Thanks for starting this thread, best wishes to all 😊👍❤️

 

 

 

 

SMH1954
Member

Re: Need Positive Letrozole stories please

I totally agree @Sue A - we need to know  about positive outcomes as well as the very important information about side effects and coping mechanisms. Balance is essential- I truly was on the verge of not taking my prescribed Letrozole out of fear. Have a great week everyone. 

Sue A
Member

Re: Need Positive Letrozole stories please

Morning Sculptor1 So pleased you are doing well.  I am also about the same stage as you and so far I have not had any problems.  Its nice to put messages about being okay as it was very worrying when you read some of the statements on here.  Lets hope those that are suffering find ways of overcoming the problems. Best wishes to you all. xx

SMH1954
Member

Re: Need Positive Letrozole stories please

It’s great to hear that things are going well for you @Sculptor1. Thanks for keeping us informed 🥰.

Best wishes and fingers crossed for the future. 

Sculptor1
Member

Re: Need Positive Letrozole stories please

Morning all, said I would keep you updated . Almost 7 weeks in now and still no side effects from letrozole apart from the odd hot flush (mostly after coffee or a meal).  Am so happy about it as I was dreading taking them. Still taking them at 5pm with a mouthful of food. Still early days but so far it seems to be suiting me. Just finished 4 of 5 radiotherapy sessions and so far that is good too, have been told that, as the radiotherapy is cumulative and continues to work for at least two weeks after the last session, I should expect to feel worse for two weeks and then start to improve. Skin is a little bit pink and a little bit warm but that is all so far. I hope you’re all as well as we can be whilst this is happening to us. Take care, speak soon and big hugs ( gingerly at the moment) ❤️❤️

SMH1954
Member

Re: Need Positive Letrozole stories please

 @Judy H I hope you’re aches and pain does subside - do let us know how you get on😘. And can I ask when you started taking Letrozole? I’ve been ruminating over whether to take it or not but finally came down on the side of ‘yes’ take it and see if I actually have any SE’s. I’ve only taken them for a week up to know. Im not at all sure whether there is an expected period within which SE’s start up. I’ve read that it’s quickly, and also that it’s after 3 or 4 months! Doubtless there’s no definitive answer and we’re all different. I’m planning on keeping an eye on this forum and this thread to report on my own experiences. Best wishes to you all x

tasa
Member

Re: Need Positive Letrozole stories please

Hello,

I'm taking Letrozole, only for two weeks yet but haven't experienced the really bad side effects. My hot flushes have been worse, more sweaty but not more frequent. After 3 months I have a review. Remember you can go back to the oncologist at any time if you find side effects too bad.

I hope this helps 🙂

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’ 😉