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Are you on Letrozole? Please take part in this .......

120 REPLIES 120
Confused Meanderings
Member

Re: Are you on Letrozole? Please take part in this .......

I'd just like to say thank you oh wise women in my computer - this thread has been really enlightening! I sailed through menopause years ago (I'm 63 now) with just a few hot flushes. I thought I was sailing though taking Letrozole too. I started taking it in August, I had a lot of hot flushes to start with, but that settled down and I just have the occasional one now. I have had some other niggles that I was ascribing to age and not having recovered fully from chemo and radiotherapy. Now I realize it could be the Letrozole. I feel a chat with the breast care nurse coming on! I get the ache around my collar bone, luckily only from time to time. I still get really tired, especially if I go out and about. Despite being tired I struggle to sleep at night. The brain fog is so bad my husband has been concerned about Alzheimers! And I have started with the vulval itching. None of these things are as yet so debilitating that they are ruining my quality of life, but I'd rather not get to that point! I don't know why I didn't join the dots and realise what was happening, but thank you all of you!

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

How true dear willowherb. It appears gardeners are as annoyed by willow herb plants as many are by seagulls.

A lady near my flight path keeps trying to stop me eating her cat food.

But whatever it says on the tin, I have three chicks a year to feed, and my reproductive life last   for 25 years. That’s how my brood is spreading far and wide. 

Seagulls

Tigress
Member

Re: Are you on Letrozole? Please take part in this .......

Would you mind me saying, oh that’s good news @willowherb ?  I mean for me of course ☺️ as it gives me hope. GP appointment is 2 weeks today and I cannot wait to be able to discuss it with her. 

willowherb
Member

Re: Are you on Letrozole? Please take part in this .......

Hi @Tigress 

Mine was 8/8 too

willowherb
Member

Re: Are you on Letrozole? Please take part in this .......

Hi @Seagulls 

No , there is an applicator - it's just one that you reuse for the lifetime of the pack. You have to carefully wash it after every use and I have had no problems with any nasty bugs using it

Not sure about seagulls having vaginas, but us railway cutting weeds are in the same boat!

 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

I think vagirux is like vagifem without the applicator. I found the applicators annoying as they are non biodegrade plastic, I think pushing a small tablet up the vagina would be a better idea but I haven’t tried it yet. My vagina is as dry as a desert so we shall see. Can seagulls have such things? Maybe

Seagulls

Tigress
Member

Re: Are you on Letrozole? Please take part in this .......

Will do @willowherb once I’ve had both appointments in mid-February.  As for Vagirux, in the research I’ve done, it seems to be an alternative to Vagifem with the same type and amount of active ingredient (Estradiol).  Both have reduced the amount of Estradiol in the recent past to widen the target market to include some women who have or had endocrine BC.  I don’t know much about the histology of my tumour but I do know it was 8/8 ER+ so I may not qualify even though the oestrogen creams and pessaries are much weaker than they used to be.  My oncologist is a junior registrar so may not be confident or experienced enough to use her judgement on it but the GP I see is a partner in the practice who might be more sympathetic, only time will tell.  

I agree that we second guess every little thing once we’ve had a diagnosis but my view is that it cannot be black & white.  There are likely to be little trade-offs throughout our treatment and they are necessary for our quality of life.  If QoL isn’t taken into consideration by the experts we lean on, it is more likely that some of us will take matters into our own hands and stop taking the drugs.  Having said that, unfortunately for us, even if we did do that (which I would neither do nor recommend) VA is non-reversible so we don’t have a lot of leverage I guess.  I’m happy for you that you have been gifted the Vagirux and it has made a difference.  If I get the same happy outcome, I will report back. 

willowherb
Member

Re: Are you on Letrozole? Please take part in this .......

Hi @Seagulls and @Tigress 

I hope you don't mind, but as I am still a little twitchy about Vagirux (you know how it is when you have had BC, you second guess every twinge, drug  etc) could you let me know how you go on?  If you don't fancy a public chat you can PM me - I just interested to hear what another  GP/onc might say on the subject.

Also - I think (maybe wrongly, so happy to be corrected) that Vagirux has replaced Vagifem in some way

Tigress
Member

Re: Are you on Letrozole? Please take part in this .......

Thanks for the detailed explanation @willowherb.  I haven’t started with the UTIs yet but I can tell that that is a question of time.  But your experience in the area where the sun don’t shine is quite recognisable and equally yukky.  I was blissfully unaware of VA until 4 weeks ago having been through the menopause 13ish years ago with just a “bees in the head” sensation at night and a desire to punch people in the face during the day (which, thankfully, I was able to restrain myself from actually doing).  I now wonder if I hadn’t been on the cusp of it as it only took 6 weeks of Letrozole to push me over the edge.  Anyway I shall gather together all of the evidence for my upcoming appointments with the GP and oncologist but if they feel they can’t prescribe anything then I will be forced to resort to the online pharmacies which goes against my grain.  There are two types of active ingredient that can be used, Estriol (weak) and Estradiol (stronger but still not likely to be absorbed into the bloodstream) so I would be prepared to try Ovestin cream with uses Estriol first and if that has no effect then move up to Vagirux.  I did join a VA private group on FB which frankly I don’t recommend - the horror stories on there should have an X rating.  But I am searching on “breast cancer” and getting some useful intel and tips which I can use in my ‘shock & awe’ strategy on the professionals!  I’m 67 and cannot live like this especially with it getting worse as the use of Letrozole continues so wish me luck! 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

Thank you willowherb. I have told my husband as I’d like another try at getting our sex life going again. I used to have vagifem but my GP stopped prescribing it as we stopped having sex when he had prostate problems, for about two years he had to use catheters to wee with, I never asked him how this affected his ability to have erections but I imagine it might have. Anyway a couple of years ago he had a treatment called rezum that steamed out the cells without surgery. That got rid of the enlarged prostate and maybe there is a hope now of getting it going. Your letter gave me hope of trying again. 

willowherb
Member

Re: Are you on Letrozole? Please take part in this .......

Hi @Tigress 

It wasn't me that suggested it.  I had never heard of it

Faint hearted readers please avoid the rest of this!

After I had rung up to get antibiotics for my 5th UTI I had a chat with my GP and she suggested Hiprex (which makes your urine acidic and is recommended these days instead of prophylactic antibiotics) and Vagirux.  

Naturally, I didn't like the sound of it as pessaries seem a bit 'icky' to me (even though I used to use tampax) so said I would give the Hiprex a go. One week on that and I was onto my next UTI so I agreed after asking questions AND ringing the Breast Care Centre. It is HRT and the leaflet says 'no way' after BC, apparently it used to be much higher dosage and the powers that be say that it's now too low to have any affect on BC, but the vagirux people have not updated their leaflet 

It was so difficult to use at first - I did not realise quite how horrible it had got 'downstairs' as the pills have gradually removed any sex drive I have and my last smear was a nightmare. Also I had never heard of VA!  I just started getting this horrible sensation of something being stuck inside and was thinking prolapse?

However, this has all gone now , no UTI's (GP has said I can stop the Hiprex to see how I get on - thank you! it is disgusting to take)

So we shall see - I know I certainly could not continue with the constant UTI's and that awful sensation for the rest of my days

I just don't know what I could have done as only in mid-60's too

 

Tigress
Member

Re: Are you on Letrozole? Please take part in this .......

Hi @willowherb, I have the same problem.  13 years past menopause but within 6 weeks of starting Letrozole in October, I have the dreaded VA.  Was it easy to get your medical practitioners to agree?  I have an appointment with a GP in early February and will discuss vagirux and the creams but fear that some GPs won’t go for it without the oncologist’s agreement and not all do agree.  Not sure the BC nurse will be much help as she’s very new and seems a bit in awe of the oncologist.  

unfortunately, according to the sufferers of VA in the menopause groups I belong to, it is lifelong once it’s started so creams like Ovestin will be permanent additions to the bathroom shelf. 

At the moment I’m relying on moisturizers like YES and Vagivital but it’s so painful to apply and there’s usually blood involved (TMI) so I’m hoping to get something more effective.  Congratulations on almost getting through the Letrozole ordeal - not sure I’ll make it if this is what it’s like after ten weeks! I suppose at least is shows the drug is doing its job …

willowherb
Member

Re: Are you on Letrozole? Please take part in this .......

Hi @Seagulls 

I was diagnosed with VA this summer after several UTI's in quick succession.

I am now on vagirux which is a pessary . It is oestrogen but very low dose and my GP and BCN assured me it is OK as it is very low dose and topical rather than taken. 

I must say it has made an amazing difference - no UTIs and I have stopped feeling like I have a prolapse . It took a while to take effect and to be able to apply it without discomfort (yes I was that bad!)

I am due off letrozole next winter and I will have to see whether I still need it (anyone know any different? I would be pleased to hear from you as I hate taking pills!!

 

 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

Thank you Tappin

tappin
Member

Re: Are you on Letrozole? Please take part in this .......

I was asked about atrophy, as one could have a a vaginal oestrogen gel, as the absorption into the body is minimal. 

Have a word with the breast nurses. I now take Femera - the original drug, -which is expensive but I asked the oncologist to prescribe it, so that's what I get-SE are less than others. I figured why should we have to put up with SE with cheap generic drugs when we have to take it for 5 years!

I was still on HRT (at 77) as I liked it and kept my bones strong, until I stopped cold turkey in October 2021 after my diagnosis. I did have a few hot flushes, and one night sweat, but that's all so I was expecting a lot worse!  

Don't suffer unnecessarily, ask for help. None of us wanted to be here, but here we are and have to make the best of it.

 

 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

A Sun Pharma

B 2.5 mg

Side effects Yes or No: YES

Started taking Letrozole about six weeks ago.  Aches and pains in legs and hips , it has made the carpal tunnel syndrome I have worse , I am getting hot flushes again after the menopause aged 54 as I thought I am going through it again at 67. I have had vaginal Atrophy for years and no one seems to want to help me with it as all of the stuff that works contains oestrogen, since this summer.  I would like to take Vagirux if I knew what it was. I feel that no one my age is meant to be interested in sex but I still am at least I would be if I could do it without pain and with someone who wanted to have sex with me. My husband doesn’t seem to be one of them. Who can blame him after the stuff that’s been happening to me and affecting my mood over the last year or so?

D Dec 23 2022

E 6 pm teatime if I remember, later if I don’t

CoachJo
Member

Re: Are you on Letrozole? Please take part in this .......

A. Accord

B. 2.5mg

C. Yes

D. 2 years

E. Bedtime

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

My preference is for haddock. I live near Hastings and a rather wonderful fish and chip shop called the lighthouse. It used to be near where I lived in Clive Vale, a suburb of Hastings Old Town. I flew to Etchingham four years ago. I now have no local source of sea fish. Roger Daltrey runs a trout fishery down the road near Burwash but I wouldn’t be very welcome there. So now I have to resort to Birds Eye. Oh how the mighty are fallen. Curly Wurlies would pull my fillings out so not my preferred snack sadly. And Percy Pigs? I like the odd sausage but I fear Percy Pigs may be chocolatey. I only like plain. My spouse is the milk chocoholic in our relationship. I get him about six bars of Cadbury’s dairy milk a week. He must think he’s a cow.

Seagulls

Tigress
Member

Re: Are you on Letrozole? Please take part in this .......

Ooh no.  Seagulls are definitely not on my list of delectable treats, I assure you.  In fact as I am a great eater of fish, we may well in competition for a nice bit of cod (with chips obviously) or salmon.   Possibly also Curly Wurlys and Percy Pigs. 

Tigress
Member

Re: Are you on Letrozole? Please take part in this .......

Thanks for the clarification @Seagulls.  Completely understand your rationale and guess I would do the same in your situation.  This is the effing gift that keeps giving, isn’t it.  I wish you all the best with the first session.  I may well be in the same position before long. 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

I have replied to you Tigress, I hope you don’t eat Seagulls my friend

Kay0987
Member

Re: Are you on Letrozole? Please take part in this .......

Personally I think the rational is sound and would be doing the same thing as you. I hope it goes well enough to where you feel comfortable completing the recommended treatment. I know it's a crapshoot and all any of us can do is make the best decision we can with what we have. I also am sorry that your mother's care falls on just you. I hope it works out quickly so that your mom is settled and you can solely focus on your own health and wellbeing. 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

Dear Tigress 

No problem asking for precision. It is one infusion of zeledronic acid every six months for three years. So 6 infusions in total.

How did they sell it to me?

My oestrogen positive cancer tumour had an intramammary lymph node next to it. This was hard and looked like another tumour of about the same size as the breast cancer tumour. Most people don’t have intramammary nodes and there’s debate about where they drain to. My pathology report on breast tissue removed when I had  a mastectomy on 8 Sept 2022 describes my cancer as having metastasised to the intramammary node and that there is “possible lymphovascular invasion” and it also says this node was close to the chest wall. 

I think the implication is that despite only having an oncotypeX score of 12 (I think) it could have spread to my bones.

I don’t have any symptoms of this but that’s why I thought I would take it. The other reason I was swayed is that I am also taking letrozole for 5 years and this reduces oestrogen. The effect of this is to cause osteoporosis.

So Zeledronic acid strengthens bones, it’s meant to make cancer less likely to enter bones so not only does it make you less likely to have osteoporosis, but it also has in theory the ability to stop cancer entering your bones. Of course it can appear in lots of other places e.g. the lungs, brain, eyes, liver as well so it won’t help with these areas. Bit of a lottery really but bones are the usual first site for secondary spread.

The first infusion is supposed to be the most likely to give you side effects so whether I will go on with it very much depends on the results of the first. This is next Thursday.

Seagulls

Tigress
Member

Re: Are you on Letrozole? Please take part in this .......

Hi @Seagulls 

I’m interested in how and why it was determined that you should have the zelodronic acid infusion.  I’m at risk of osteoporosis although I haven’t had the Dexa scan yet and absolutely dread having to have bisphophates too.  I feel crap enough on the Letrozole as it is.  How was this pitched to you?  Also, you say you’re only having ‘six every six months for three years’ - is that one a month or is it a typo and should say one every six months?  I’m developing a very Anglo-Saxon vocabulary these days 🤬

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

My brother just says he is ill and that he keeps going to see different specialists and they can’t find anything wrong with him. Maybe there is nothing physical wrong with him but he suffers from anxiety, he is an alcoholic and he’s a hoarder of things and money, so he won’t spend anything let alone help me or my mother. So it’s down to me or no one.

It’s not that bad, I had my diep on 8 Sept, always memorable as it’s the day our lovely Queen Elizabeth died. I’ve recovered quite well now from that. The letrozole started two weeks ago plus AdCal tablets that are huge and have to be chewed (full of sugar). Next Thursday I have my first zeledronic acid that has side effects (rare they may be) that fill me with horror. But I’m only having one every six months for 3 years. I have veins like a mouse but let’s see how I get on with the first which is meant to be the worst. It’s not chemo but is given in the chemo dept, and it doesn’t cause hair loss. Letrozole does that apparently but I have very thick hair especially for a seagull.

Seagulls

Kay0987
Member

Re: Are you on Letrozole? Please take part in this .......

"Health care must be hit and miss in the States"

This is a succinct and accurate summation. When you have some privilege health care can be amazing and luckily most of us here have some. But when you don't, you can be completely on your own. And either way your privilege needs to include extra money to pay your out of pocket expenses which has bankrupted way more than a few families. Despite my diagnosis I have been most fortunate and I will be forever grateful.

As far as you go, I am so sorry that you have the added stress of your mom's care fall on you. My father and stepmother were really struggling last year and when I was diagnosed my brother took over. Do you have a sibling who can take on the stress so that you can focus on your own health? Or a sibling that may not want to but you put it in their lap anyway? I mean I kind of did that with my brother but thank goodness he was game. 

But yeah if there's one thing I've learned on this site it's that your wait times are IMO inexcusable. I know there's a reason for it and understand why it's happening but it needs to be top priority to correct. Nobody should be waiting weeks for biopsy and scan results much less months to see someone in regards to a cancer diagnosis. I don't care if it's life threatening or not. A wait with any cancer is life threatening and what it does to your mental state is criminal. We all have our issues with our respective country and goodness knows the states has a plethora of flaws. But I don't hear of a lot of wait time for results and considering my diagnosis that's a relief. 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

Thank you for your reply Kay

Health care must be hit and miss in the States but in this country a lot of people are going private now because it’s so difficult to get to see GPs and have timely health care except for really serious life threatening conditions. But diagnosis has slowed down so you don’t know if you have a serious life threatening condition until maybe it’s too late.

I am part of a baby boom after the Second World War and we are putting too much of a burden on the NHS perhaps. the idea of the NHS was to make people healthier. It’s just made us live longer and need more medical care what a shame eh?

They like to abandon us when we’re chronically ill and in our 90s when suddenly we become fit as a fiddle and sell our houses to provide for ourselves, that’s the situation my mother is in now, but I have to do it all for her. Sell her house that is. When undergoing cancer treatment myself. Hurrah.

Seagulls

Kay0987
Member

Re: Are you on Letrozole? Please take part in this .......

It all depends on whether you have good insurance. Which unfortunately we have a ton of people who don't and therefore don't get mammograms at all. But if you have insurance, it'll pay for you to get a mammogram every year with no out of pocket expenses. 

Steph J
Member

Re: Are you on Letrozole? Please take part in this .......

Thank you xx

tappin
Member

Re: Are you on Letrozole? Please take part in this .......

Patriciabeth, 

Hi Just wondering how you were after coming off the letrozole for a month? If you speak to your oncologist, and ask him''/her to specify Femera brand because of the side effects you have suffered,(the original one) that is what will be prescribed in spite of what your gp says! I have been much better on that-I don't see why we should have to put up with inferior meds if they cause issues. Good luck!

tappin
Member

Re: Are you on Letrozole? Please take part in this .......

Hi Just wondering how you were after coming off the letrozole for a month? If you speak to your oncologist, and ask him''/her to specify Femera brand because of the side effects you have suffered,(the original one) that is what will be prescribed in spite of what your gp says! I have been much better on that-I don't see why we should have to put up with inferior meds if they cause issues. Good luck!

 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

Is there a regular three year mammogram programme in the States? I imagine not 

Seagulls

Kay0987
Member

Re: Are you on Letrozole? Please take part in this .......

Hi Tappin! Nice to meet you 🙂 I think in the UK you all use pretty much generics since you have a nationalized health service. In the US we don't of course. The good news is that if you have fantastic insurance you can get the best drugs avoiding generics and their additives if you want, great health care etc. The bad news is that not everyone has great insurance nor access to the best hospitals. And no matter what we have ridiculous out of pockets. My out of pocket expenses with treatment have totaled so far well over 5K and that's for last year. This year we'll total as much because this is when I'll get reconstruction surgery. At any rate lupron is the ovarian suppression drug of choice over here if your insurance will pay for it and most good insurance will. Right now it's a shot every month. Pretty soon they'll start me at a shot every three months which will be much better considering that the top rated cancer center I go to is an hour away. 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

Dear Tappin

My biggest problem is boredom followed by dwelling on my situation. I think running a B and B might be a great antidote. I would probably be longing for boredom again. 

I feel a bit cheated as I’d already had breast cancer in the same breast 19 years ago. 

I didn’t have any follow up or mammograms as it wasn’t diagnosed via a mammogram. I had dense breasts and then I read independent Cochrane reviews of mammography and decided they overdiagnose relatively benign cancers and under diagnose the aggressive types. So leading to over a thousand more diagnoses a year of cancers that don’t cause deaths.

I am all for being breast aware instead. Unfortunately I had my head in the sand. I probably could have found my cancer about a year earlier had I taken note of pain, bigger breast, better shape than it had been etc etc. I just didn’t want to know. Too late now of course… I wanted to live cancer free and not take any medication so I did this from May 2004 to late March 2022 when I finally gave a feel to my tender bosom. It’s not there now. You can’t have breast conservation after radiotherapy so it’s gone now. Seagulls

tappin
Member

Re: Are you on Letrozole? Please take part in this .......

Seagulls- Yes atrial fibrillation- I had an episode in 2017 so now take blood thinners to prevent a stroke which can be triggered by af. I just take it alongside other things I take at night. 
I’m sorry to hear of the problems you have had- mine was found after an elective mammogram- recalls stop once you are 70 but I went every three years anyway- thank goodness! It was very early so I was lucky although speechless at first when told! 
im 78 in a few weeks time and I’m not planning on leaving the world yet-and nor should you! If a tablet helps me to carry on doing what I want then so be it- it is pointless being a martyr and suffering! I do plan on trying to lose the weight I have put on but I’ve never been a great one for formal exercise- I do run a B and B though!  Remember we are stronger than we think! Happy aNew Year!

tappin
Member

Re: Are you on Letrozole? Please take part in this .......

Hi Kay0987

welcome! I think every bit of info helps us gain insight. I am 77 but happily took hrt for over 30+ years so when I stopped cold turkey Nov 21 I was expecting to suffer dreadful withdrawal symptoms but no- only the odd hot flush!

Ive not heard of anyone in the uk taking Lupron. 

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

Dear Tappin

By AF do you mean atrial fibrillation? I wonder if age and/or age related illnesses make any difference to how letrozole affects people. I am 67 and as far as I know in quite good general health. I eat a varied diet, don’t have huge amounts of meat or fatty foods, and do a lot of walking as we have a dog and like country walks. Last year we did the South Downs Way twice going both ways with a tent. We didn’t quite make the whole length on the way back, as I got diagnosed with breast cancer in the middle. That’s not done my healthy life style much good. Being laid up with a split wound on my tum from my reconstruction put paid to some of my plans for serious exercise. I have taken letrozole now for 9 days and I have had the odd hot flush and pains in my hip but I think the hip pain was there before I started taking it. So it’s difficult to know whether my aversion to taking tablets for five years could have a bearing on my tolerance or otherwise to this and other cancer treatments. Paracetamols are about the only thing I used to take. And then only if I had a headache. Two relatively painless breast lumps and I’ve had surgery, adverse pathology reports, possible lymphatic vascular invasion via an intramammary node - unfortunately i have these rare beasts, and uncertainty for the rest of my life. Mind you it’s always been uncertain, I just didn’t recognise it. My brother says we live for three score years and ten.. So my time is almost up. Seagulls

Kay0987
Member

Re: Are you on Letrozole? Please take part in this .......

This is an excellent survey and will be good for all of us. At any rate I'm in the US and we don't use generics here. So I've been on just straight letrozole for two months along with the ovarian suppression drug of lupron. I am 48 years old and side effects are minimal if not completely unnoticeable. I have some mild muscle soreness and stiffness but nothing that stops me even remotely. No hot flashes although I do get more overheated easier. I take it at night right after I eat my dinner and take it with a good amount of water. At least half a glass. 

There are some things I am doing to help my bone mass and keep me limber but I've only just started them so I don't feel comfortable suggesting anything to anyone yet. In a couple of months though I'll post what I'm doing if I feel like it makes a difference. I think we could all use the help to make sure we can live our lives comfortably and happily after our diagnosis. 

tappin
Member

Re: Are you on Letrozole? Please take part in this .......

I too have the B12 shots! two years ago I had headaches and tummy upsets, and that turned out to be lack of iron! So I take iron tabs now too, what with electrolyte tablets too which I take to help prevent AF I rattle as well!! Still if it means I can carry on so be it!!  

I think that even if people are careful about their diet, the soil is so poor now, that we frequently lack the nutrients our bodies need to function properly! I eat very little in the way of processed foods, but even so, am not averse to taking supplements to make sure I get what I need!

 

 

 

willowherb
Member

Re: Are you on Letrozole? Please take part in this .......

Hi @tappin 

I got tingling fingers in 2020 just after I started on tamoxifen.  I reported the side effect to my GP when I spoke on another matter and he had me tested for B12 deficiency pretty sharpish  Which it turned out to be! My B12 was extremely low and the tingling was the neuro side-effect of that

Had the injections and now on the pills for life for that - I now rattle!!

 

 

 

tappin
Member

Re: Are you on Letrozole? Please take part in this .......

I started taking Letrozole in December last year, now take Femera the original drug, specified on my prescription on my request to the oncologist. On other brands my hips and knees were so stiff I went up stairs one step at a time! This one is not nearly as bad. It is apparently more expensive, but it is MY quality of life that is important! I do have tingling sensation in fingertips, (ignored by GP), but BP  & cholesterol unaffected (I do take meds for them anyway). My weight is the main thing that bothers me,I am steadily adding tot he scales, but not eating any more, -I only have 2 meals a day, no snacks I don't drink alcohol, or fizzy drinks so I am at a loss as to how to lose this extra weight! The GP again ignored it! 

I did not have radiotherapy, though as I missed the 'window of opportunity' due to waiting for a second opinion.

The ghastly Calcichew and Calceos I really couldn't stomach so I bought Calcium and Vit D tablets to take instead. I also take collagen capsules for my skin which is now very dry.  

willowherb
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Re: Are you on Letrozole? Please take part in this .......

 

a) Which Brand of Letrozole do you take : Accord;  Was given Sun for 2 months - NEVER AGAIN (GP happy to specify Accord)

  b)  What strength is Letrozole prescribed? standard

c) Side effects Yes or No: YES

Started taking Letrozole 18m ago after trying Anastrazole (the standard from my hospital), had a couple of months then the ONC changed me to Exemestane because of side-effects, then to Tamoxifen. Last chance AI was Letrozole.  Aches and pains in legs and hips , swollen hands in morning , insomnia some nights, mild sweats, osteopania (since starting AI's) and now vaginal Atrophy since this summer.  So now I take Letrozole, B12 (not a side effect but diagnosed 2 years in) , Vit D  (the calciferol was a nightmare so GP changed to pure Vit D) and now Hiprex (to try to stop constant UTI) and Vagirux.

Looking forward to next Christmas when I stop the Ai and maybe some of the others...

Oh, and just had tests for BP and Cholesterol which are also side-effects of Letrozole... no results yet

These pills are horrible... but so is Cancer. They don't guarantee you won't get it again on the pills and I have sometimes wondered if I should just stop them as ONC says the first 2 years are the most vital. There is little difference in my PREDICT score if I was on them or not, but the thought of getting it again made me go on them.

d) How long have you taken Letrozole:  18m (started AI Christmas 2018)

e) Particular time of day you take your Letrozole : when I remember

MLT21
Member

Re: Are you on Letrozole? Please take part in this .......

Hi @Steph J 

Lloyds Direct 🙂

All the best.

Carmen Verandah
Member

Re: Are you on Letrozole? Please take part in this .......

Hi

 

I’ve  not heard of breathlessness as a side effect, but best to check with oncologist to discuss the options.

The Breast Care Now helpline is also very helpful.

 

 Good luck

 

Carmen

johnharper
Member

Re: Are you on Letrozole? Please take part in this .......

hi my wife had a mastectomy 4 months ago,didnt need any treatment, other than taken letrozole she has been on them for 6 months,she has been getting very out of breath,got her lungs checked by the doctors told they were ok she thinks its the letrozole,told breast nurse she said it wouldnd be the tablets but i disagree,she is off them for two weeks to see if any difference,but we want to change them,

Steph J
Member

Re: Are you on Letrozole? Please take part in this .......

Hi MLT 

That information is fab thank you.

Which online pharmacy did you sign up with? I certainly did not have any idea you could do this.

Accord is a brand which has been readily available in my area but the Sun pharma that I was started on is not. 

However, I had Cipla & found it suited me better but then couldnt get it last time & hey presto was given Sun pharma ha! unfortunately the side effects that had disappeared recurred and now back to bloody awful insomnia.

Steph x

tappin
Member

Re: Are you on Letrozole? Please take part in this .......

I am on the Femera brand. I have to say, the aches are much less bothersome. I have stiff knees when standing up after sitting for a while in the evening, say. but out and about I have no trouble-some of the others meant I went up the stairs one at. time and I felt 97 instead of 77! I asked the GP to specify Femera so that's what I get now. If things carry on like this I won't mind taking it for another 4 years! I don't seem to have any other side effects, apart from the fact I am unable to lose any weight-I put it on at first with other brands, and it's stuck! Hot flushes etc are very rare now, but I do have a mild ache in my collar bones-I've had a bone scan to check for mets, but I'm going to ask for another one-I was horrified to learn how common bone mets are! I have my first annual check in December.

MLT21
Member

Re: Are you on Letrozole? Please take part in this .......

Hi

Not sure if this helps anyone trying to get a specific brand of Letrozole.  I did a lot of research comparing the Letrozole ‘generics’ ingredients to the original Femara on the drug database website.  Nearest was Accord brand.  I asked my Oncologist to prescribe this specific brand, which she did.  I went to my Pharmacy and they had to order it in, stating that they might not be able to get it next time!  So, I set up an account with one of the big online pharmacies that deliver your prescriptions (not the NHS one).  It’s very straight forward.  As my repeat prescription specifies the exact brand, that is the one I get every month, delivered free and on time.  Perfect! 

The key is that your prescription MUST specify the brand required, otherwise you will always be given whatever generic is available at the time and the ingredients vary tremendously. 

All the best.

Seagulls
Member

Re: Are you on Letrozole? Please take part in this .......

I am not keen on taking it and have asked for my pathology report to know exactly what they found when they did my mastectomy, what stage it is at, and what the grade is. I don’t see why I should just take these hormones without thinking what will happen to me over the next 5 -10  years i.e. ages 67 to 72, and 73-77. I know they are keen not to discriminate on grounds of age when giving treatments but why should I want to go towards my old age having treatment that has all sorts of nasty side effects if there is little difference in my prognosis? Nobody has told me the statistics for secondaries, new primary, recurrence of original cancer. I would like to know what I want to bet on. After all there’s worse cancers could get me, ovarian for example that are more common in childless women such as me. I was told tamoxifen might give me uterine cancer so when I got fibroids and then bleeding I was given some treatment under general anaesthetic which was fine, then I went to another hospital and had the most painful horrible biopsy of my life. Under no circumstances allow yourself to have anything similar, it was agony. So I am not going to sign up for any kind of letrozole until I know my 10 and 20 year likelihood of secondaries with and without letrozole

Curly Sue
Member

Re: Are you on Letrozole? Please take part in this .......

Hi,

I've been on Letrazole since June 2022. I've always had Sun Pharma  apart from one course.   I had achey joints to start with , especially my knees. Fortunately by September the aches had eased off significantly.

I was already taking 2 co-codamol at night to help with arthritis pain in my hips and didn't need anything extra.

I have had some hot flashes and minor nightsweats and been having aural acupuncture to help with that (at Weston Park Cancer Charity in Sheffield) . It seems to be working, they're fewer and further between and not as severe.  Apparently this sort of acupuncture helps approx 80% of cancer patients who try it.

Good luck all , look forward to hearing other people's experience.

Curly Sue xx