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

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

tappin
Member

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

Hi all, I’m plodding on with the Femera brand atm. I have put on weight (another side effect!) and wonder if that is contributing to the achy knees etc. Am speaking to my gp this week so will see. I also have aches in my collar bone and surrounding area which started quite soon after starting the treatment. This triggered a scan to check for mets which was clear but I’m wondering if, even though the lymph nodes weren’t affected, whether I do have some rogue cells migrating there! I take a Piriton at bedtime suggested ages ago by a surgeon friend and I sleep very well. There are lots of things you can do to help go to sleep. Don’t go to bed hungry, some people take inulin ( a type of insoluble fibre) which also helps with the gut biome. Actimel taken at bedtime helps your gut digest your food too, so that’s another idea. Onwards and upwards! Take care,

Sammy73
Member

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

Hi all,

The accord seems to be ok I think everything had flared up since taking the Manx brand, I suppose we just need to keep talking to bc nurses and chemo team if we are not happy.  I saw my chemo manager on Friday as I was having my zoladex injection and she has requested me a consultant call to check where I am in the next couple of weeks. Fingers crossed its all calm on the accord brand. Keep going ladies, there's always someone to help us out. X

Steph J
Member

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

Hi, Sammy & everyone, 

I started having a complain several weeks ago once I started to realise the problems that can occur with Letrozole. 

Initially I was exhausted despite experiencing insomnia, had achy joints & noticed hair loss, & noticed a bit of abdominal pain.

Went on a mission to try & get same brand, found out this is virtually impossible unless prescribed the original brand.

Bc nurse advised to give it a go & monitor with option to speak to Consultant again.

Im glad to say my achy joints have disappeared, not as tired & hair loss has not got any worse, still notice hairbrush gets fuller but Im not overly concerned at this point . Insomnia is still occuring but again Im not stressing over that because Im still waiting for radiotherapy so probably still under stress.

The recent Letrozole Im taking is Cipla as the Sun pharma was nigh on impossible to get hold of after my many visits to various pharmacies. That was until I went back to collect a new prescription of Cipla and was given Sun pharma 😂😆 ...Im saying nothing!!

So Iv got my fingers crossed that once I finish the Cipla & recommence the Sun pharma the side effects dont reappear.

Apart from that my journey is steadily moving forwards in a positive direction.

Just wanted to give you an update as I know plenty of girlies will read these posts for info as I did & do, Id be lost without this forum.

Each post is so valuable, thank you everyone xxx

 

 

Sammy73
Member

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

Hi Steph, 

 

I have had accord b4 and another brand that I cant remember the name, white box red writing on. 

Luckily after numerous phone calls I have been prescribed accord again. 

 

It's mad to think this affects us all so much. But it really does!! 

Good luck everyone and be strong x

Steph J
Member

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

Oh dear I was hoping to hear Femara was much more kind on the body . 

I hope the side effects on your hips & knees wear off for you . 

I'm day 1 tomorrow on Cipla .. not happy having to change brand so soon but I'll give it my best . 

Thank you for sharing your experience x

tappin
Member

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

Exactly the same! I was reduced to going up the stairs one step at a time and felt like I was 95! I was on Accord, and sometimes one in an orange box, so when I had my phone consult with the oncologist, he said come off it for a month, and I asked to be put on the Femera brand-the proper one. So, when he sent the letter to my GP he specified Femera and that's what I get now. Iv'e only been on it 6-7 weeks, so I'm monitoring things now, hot flushes are few and far between, but knees and hips are beginning to make themselves known so we'll see! Ask or tell your oncologist what you want and the GP will prescribe it. The side effects are so horrendous for some I think we are amazing to put up with it anyway!

tappin
Member

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

It, like everything else in the NHS, is only FREE at the point of delivery-when the patient needs it. We have all paid and continue to pay for the NHS through taxes, all our lives, so it's not 'free'! I have asked for the Femera brand, as it is the original one not the generic. I have been taking it for a month or so now and hot flushes are few and far between, but I think the joint pains are increasing-I am monitoring it to see-I ended up having to go up stairs one step at a time on the Accord brand which I took for 7-8 months! Never had problems with joints in my life before that!   

smclaire
Member

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

Hi, I am on exemestane and I have the same problem with the cheaper versions . The side effects are unbearable, I had a consultation with my GP after being told they would not prescribe Aromasin and I told him how bad it made me feel , that it was seriously affecting my quality of life and he agreed to prescribe it for me . The difference in price is huge , £6 a box of the generic brand compared to £80 a box of aromasin . But he did listen , maybe ask to see another GP and explain just how much this is affecting you! At the end of the day if you are in so much pain you can’t exercise, you could gain weight and then that could end up costing the nhs more by you needing treatment for other chronic diseases ! It’s so shortsighted!! You shouldn’t have to change the drug that had been specifically chosen for you because they won’t pay for the more expensive tablet!! 

good luck xx

Steph J
Member

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

Hello Patricia 

I have only recently started Letrozole , and have experienced stiffness & discomfort in wrists,  fingers , knees & right hip . As well as awful fatigue . 

I mentioned it to my BC nurse & she advised to continue for a couple of months & side effects should subside if they're going to . 

She said if they didn't she would speak to Consultant & ask for Femara for me . Perhaps you could try your BC nurse & see what she says.  

Once it is recommended by Consultant I think you have a stronger argument with GP . 

I'm not sure what the process is with pharmacies & supplies , it seems as though they get what arrives , so I'm guessing they will be governed by some sort of procurement which will determine which distributors they contract with , and Im presuming the cheapest will reign! Not good for us though 😕

Sorry you're having problems , good luck xxx

 

 

Jill1998
Community Champion

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

Hi , have you considered trying Tamoxifen if it’s not contra-indicated for you in any way , it is slightly less effective post menopause but doesn’t tend to be quite as harsh on your joints - it comes with other side effects obviously but maybe worth a try ? I had same run around rebrands it’s exhausting and upsetting ☹️

Patriciabeth
Member

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

Evening everyone

I went to my GP few weeks ago to ask for Femara, I was advised they could not prescribe it due to cost the only brand of Letrozole they could prescribe for me was Dr Reddy or Sandoz, prescription went to my GP pharmacy and they gave me Cipla not Dr Reddy as GP had prescribed, I cant tolerate Cipla or accord due to debilitating pain in my knees (awful at night), hips, and wrists. I can only come down stairs one stair at a time and struggle to get up from the chair after being sitting working.

I have also since found out Dr Reddy Letrozole stopped being manufactured a year ago and read that Sandoz in no longer being made either.  GP said I have to have what the surgery receive and what is on offer when they order it.  I am so upset and feel so low, why do we have to face this complication.  My pharmacy had a stock of one packet of Glenmark in which was slightly better arthralgia wise but he cant get any more of these either.  I phoned my breast care nurse in desperation she advised me to come off Letrozole for a month just to double check the symptoms I have are Letrozole related, which i know they are they will then make an appointment for me to see the Dr at the hospital.  My husband is worried about me not taking the drug for a whole month.  I just don't know what to do.  Has anyone else had to deal with this any suggestions greatly appreciated seems we have to fight our own battles. My very best wishes to you all x 

Kitkat23
Community Champion

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

Hi there....I asked my gp to put Accord on my reoeat prescription so I always recove that brand ( i tolerate it well) ....when they haven't had it in, they have ordered it instead of giving me what they had in stick....could you ask your gp to do the same? Hope you get sorted 

Steph J
Member

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

Hi Sam 

Oh wow what a bummer 😕 ..  I was trying to get hold of Manx because it had an ingredient in that Sun pharmacy had & Iv been started on the that.. but I gave up trying to get Sun pharm & tried to get Manx ...but all the pharmacies seem to have is Accord & Cipla .. 

Iv got to get something tomorrow as Iv reached the end of supply now .  

I'm guessing from the posts on here the side effects are very individual & one shoe does not fit all .. but how awful for you the available brand has set you back . 

It's seems very unfair to have to just put up with what arrives on shelf.. I know we should be grateful for the medication that is given free & saves our lives & may seem ungrateful to complain but I know if I can't adjust to this Letrozole it will affect the next five years & I am planning on returning to work . I could not work with the level of fatigue I have at moment .. I'm hoping things will improve.  

I hope you are feeling a bit better today , good luck with Consultant .. could I ask which Letrozole where you on originally ? Steph xx

Sammy73
Member

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

Hi To All,

 

I have been on letrozole for over a year and managed quite well, then the last prescription I got was Manx and I didn't recognise it, but didn't give it much thought, then within a day I have had so many hot flushes and horrible period stabbing womb pain that after 4 days I went to bed and have not taken it today, I have emailed my consultants secretary this morning to say I'm not going to take it for the next 2 days as I can't deal with it. I will call them on Monday!! 

I'm really annoyed as I've sort of been managing and suddenly they have changed it!!

Anyway love to all, keep strong and do as you feel is the best way forward. 

 

Sam

Steph J
Member

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

Hi Carmen

Thank you for the information. I will definately take note of it .

My BC nurse rang yesterday and I did mention the letrozole. I am going to try the Manx healthcare if I get hold of it and see how I get on.

She said she was more than happy to speak to Consultant and get Femara prescribed if Im struggling.

Cant ask for better than that 😊

Take care & I really do appreciate your response xx

Carmen Verandah
Member

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

Hi Steph

Thanks so much for the fairy dust😊, and here is some for you! I wish you lots of strength and courage for your treatment. 

 

I remember when I trained as a family planning nurse, admittedly a long time ago now, we encouraged women to stay on a new contraceptive pill for several months, rather than changing to a different one, if they had troublesome side effects, to allow their bodies to adjust and I think this is true of letrozole. In my case, I now experience fewer and milder symptoms, on Femara, manufacturered by Novartis, but I recognise that we are all different.

It’s worth remembering that there 2 other aromatase inhibitors, anastrazole and exemestane, but letrozole seems to be the first choice in the UK, I don’t know why.

My advice is to speak to your oncologist, and breast care nurse specialist. I also found the Breast Cancer Now helpline very informative and supportive, and their leaflets about hormone therapy.

I just had my hair dyed back to platinum blonde last week and it’s been fine, it hasn’t fallen out or turned green! There is an excellent charity called Cancer Hair Care which I also recommend. 

Carmen 💕

Steph J
Member

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

Hello Carmen & other Letrozole takers 

Iv been reading the comments quite intensely as I have recently started Letrozole Sun pharma.

As Im due to run out shortly I decided to use the wisdom of the group and ask if I could be prescribed the brand Sun pharma so I could at least give it a good shot and see how my body copes with it. 

No response from GP as yet.

I went to the local pharmacy and they said they only get Accord or Manx healthcare. They returned my prescription and off I went around pharmacies to try to get Sun pharma without any success. 

It seems I can get Accord & Cipla quite readily, the local Boots do Manx Healthcare. 

From the comments on here it seems Manx Healthcare & Dr Reddys are same distributers, and it has an ingredient that is also present in Sun pharma. So on this basis I will be going back to Boots & see if I can get Manx Healthcare. Otherwise Im not too sure how Im meant to get used to the Letrozole.

At present I am experiencing disturbed sleep, mainly insomnia, fatigue during the day, reduced motivation ,stiffening of the fingers, achy knees & intermittant flushes.

Not sure if there is a time span of when youre likely to have reached the ceiling of any likely side effects ?Would love anyone's thoughts on that one??

This question may come across as vain and bit irrelevant in the scheme of what we all have or have had but is there any problems with hair products & Letrozole? I am due to have my hair coloured and I would welcome any tips or advise on this topic please. 

I note that you Carmen are having issues with hair growth & although you dont want to obsess about it I really do understand why you did, and why not, its all about aiming to achieve a level of normality. I really hope that your hair does start to regain its strength& grow again., maybe if youre not focusing on it as much it will. Sending lots of hope,postivity & fairy dust for you. Im obviously not a fairy & I dont think I am ha its just something I say x

I recovered and got through my last breast cancer because I had mastectomy & immediate recon. Iv always believed I was able to remain positive and had a good recovery because I didnt have to endure any chemicals and the side effects. This journey is going to be a completely different experience and Im not looking forward to it at all. I will need some fairy dust too.

I have Invasive ductal carcinoma oestrogen receptive. The plan is to remove some sentinal nodes ,tumour & proceed with radiotherapy. And continue with this awful but equally amazing Letrozole .

Hope everyone is doing ok as much as possible,best wishes to all xx

Steph 

 

Carmen Verandah
Member

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

Hi letrozole takers

I started on letrozole in about May 2021 and was given Accord. I experienced hot flushes and day and night-time sweats, insomnia, and got very achey, especially when I woke up in the morning. If I knelt or crouched down I had to really think about how I was going to get up again! I’m 65.

After reading this thread I asked my GP to prescribe Femara. In a short period of time my hair, which had grown back very quickly after chemo, thinned a lot. I then took a 3 month break from Femara from April to June this year in which time sadly not a single hair grew back. My oncologist was very relieved when I resumed taking Femara in July. I was thinking of just not taking it but I realised I couldn’t live with the anxiety of my cancer returning, which I hadn’t really thought about too much before. I’m a retired nurse and nursing lecturer so I read a lot of research and decided it’s better to be alive than to obsess about my thin hair which I am probably much more aware of than anyone else! I looked at swapping to Tamoxifen, but that has side effects too, and letrozole has better results for my type of cancer (stage 2, oestrogen receptive, treated with lumpectomy, lymph node removal, chemo and radiotherapy).

My sleep is still not great but to be fair, it wasn’t before my diagnosis and was the main reason I went on HRT.  I now have far fewer hot flushes and sweats, and don’t ache much anymore either, so my body seems to be getting used to it. I take it at night. 

My oncologist told me that a lot of women just stop taking letrozole because of the side effects but don’t tell their doctors. I think we are all effected differently and it’s definitely worth discussing trying a different brand and having an open discussion with whoever is prescribing your treatment. And finding out about complementary therapies to help alleviate some of the symptoms.

Good luck going forward everyone.

Carmen

Steph J
Member

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

Hi Tappin

Iv read your post, its good to hear other journeys.

Iv only just started the Sun pharma, so early days. I do think I am getting some side effects, stiffness in fingers & achy knees. Increased fatigue and bouts of insomnia.

Will carry on and see if any of it wears off, I know there's probably more fatigue to come with the radiotherapy so at present Im just rolling with it. 

Love your feeling 95 instead of 77 made me giggle, age is certainly just a number 😄.

xx

 

 

tappin
Member

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

I was mainly on Accord when I had the pain and stiffness in my hips and knees after about 5 months. Like you I was going up and down stairs one at a time and felt I was 95! (I'm 77 and never had any issues with hips or knees). That's when the consultant said to come off it for a month and the aches disappeared quickly. I decided when I went back on the drug to tell the GP the consultant said to try the proper drug- Femera instead of the generic. So far it seems to be better-I take it -2.5mg at night with my other meds (statin, BP meds) and at the moment it's ok. Femera is a LOT more expensive than some of the generics, but I don't care-if it means no side effects and I can take it for 5 years so be it! 

Patriciabeth
Member

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

Dear Silver

a) Which Brand of Letrozole do you take ie Accord;

    Cipla etc. -

Unfortunately I don't know the first brand name of Letrozole I was started on in August 21. Around April 22 was put on Accord didn't think anything about it at the time just noticed packet was a beige colour, then July, August 22 was given, Ciplia then back on Accord last month 09.22. Have now been taking Glenmark for two weeks.

I started taking Letrozole August 2021 - I don't know the brand I was on at the time which is annoying but at the time I did not know of the term generic and its connotations, I did not have any problems in the initial months other than hot flushes for a few weeks, however everything changed in May this year and I got worse so much so visited GP in August 22 who sent me for bone scan incase I had secondary - bone scan clear.  Around May I noticed problem with my hips and walking and my my knees and ankles as well so much so I was walking down stairs one step at a time and I feel as if I have aged, it was a Dr at work who said about generic medications and my problems could be related to my brand which made sense as I was ok for the first 7 months or so, Glenmark are better but still have joint pain in knees, wrists, itching skin, tiredness and I have noticed a dry cough.  I have been give Sun pharma to try but not tried them as yet. I can say Accord and Ciplia were the worst for me, I have appt with GP this week so will discuss with her.  I cant stop taking the Letrozole as the fear of the cancer returning is unbearable. Take care everyone and thank you for this group it is researching here that has helped me to better understand. x

b)  What strength is Letrozole prescribed? 2.5mg daily

c) Side effects Yes or No - Yes

d) How long have you taken Letrozole - since August 2021

e) Particular time of day you take your Letrozole - mid morning

 

Steph J
Member

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

Hello ladies 

Iv been reading the comments about Letrozole with great interest . I have started it this week , I had the packet on the worktop for several days before finally deciding I needed to crack on .

I am on the Sun pharma , I was just wondering how long it takes for the side effects to kick in ? 

I will be taking the advice some of you have mentioned about trying to get the brand prescribed . 

So far Im not too sure if Im getting side effects or not as I get achy hands & knees anyway when the weather turns , and it has just started to get colder . 

I do seem to feel a bit odd intermittantly so wondering if that is the drug starting to get into my system . 

I suppose what Im wondering is if I do start to get side effects how long is it best to slog them out for before seeking advice , I know Im jumping ahead of myself but Im just trying the figure the whole thing out in my head .. this is my second breast cancer and might sound daft but really didnt expect it to appear in the other breast as Iv had a great 6 years . The truth is I just didnt think about it at all , not feeling as confident as I did first time round 😟 .. 

JanSL
Member

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

I've been taking Sun Pharmaceutical Letrozole every morning since end of January 2022, 2.5mg and quickly felt more tired than usual.

My left hip weakened and became really painful, to the point that I had to think about how I could get up from bending down - before attempting it.  To the point that over the following few months I had to walk up/down steps/stairs one-by-one!

March 2022 I also began taking Palbociclib 3 weeks out of every 4 weeks and didn't notice any other side-effects.

By now my side-effects consisted of constant hot flushes - I ordered a neck fan which has saved my life!! - very painful left hip, feeling pretty exhausted at times but have been able to have a nap when needed as I retired on 1st April 2022!

July 2022 my PET scan unexpectedly showed no active cancer cells anywhere in my body and my Oncologist told me I am in remission - something I didn't expect to hear at all! 

A blessing I didn't expect to receive but accept it gratefully with thanks.  For now my breast cancer is dormant, but I remain conscious it's unlikely to always be that way so take each day as it comes.

I continue with the Letrozole and Palbociclib as the combination has worked miracles and for as long as it continues to work.

Here's why I wanted to post this today ... the pain in my hip.  I read here somewhere a while back the suggestion to try taking Letrozole during the evening instead of the morning.

Almost a month ago now I decided to give it a go and I begain taking my Letrozole during the evening.

I genuinely can report today that I no longer have the painful left hip and I am able to walk up/down steps/stairs normally and I just wanted to share this with you all, because there will be somebody out there who will read this, make the change and it will change their lives, as it has mine.

Good luck to you all ... stay strong, stay positive, stay hopeful.

Much love

xxJanxx

 

tappin
Member

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

Further to my post below, I have been taking the Femera brand of Letrozole, for about 5-6 weeks after a break from the generics for a month due to SE and things seem to be ok so far. My oncologist called yesterday following my first post op mammogram which was clear, and was pleased that the Femera is not causing any painful side effects as I had with the Accord brand, but get a hot flush, sweating, etc every now and then.  Still can't lose any weight, am tired in the late afternoon, but will persevere for now!

DebbiC
Member

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

Letrozole is doing the same to my joints especially knees! I've been on it less than a year after trying Anastrozole that was horrible!!!  I started taking Turmeric Curcumin a couple months ago and haven't felt a difference but am hoping for something.  I got a stationary bike I try to use at least 15/20 minutes a day to get my knees moving. I keep it on the easiest setting and this seems to help, I just got it a few weeks ago so we'll see.  

Milly15
Member

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

Hello Janbabs, I started taking Letrozole in December 2021, after a few brand changes, three months ago I stopped taking them due to the terrible side effects, mainly joint pain that was so bad I was on pain killers and feeling drugged up to the eyeballs, I struggled to get through every day.  My GP was horrified, but after speaking with the BC nurse she agreed that I should stop them and that she would speak with my consultant.  He was very understanding and agreed that a week or two off them would not cause any major harm, however, he then prescribed Exemestane (brand name Aromasin).  I was fine for a couple of weeks then had joint pain, started taking them every other day, pain went away, I'm now back on them everyday, and touch wood I have been fine for the last two months.  However, hair loss on head, eyebrows and eye lashes is horrid, coupled with extra hair on my chin and upper lip.  These I can and will cope with, I feel it's a small price to pay to keep cancer at bay.

I do hope that you are able to get a drug that suits your body, we are all different. 

Janbabs
Member

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

Hi

update from my previous post. Having been prescribed Letrozole in February 2021,  the main and debilitating side effect has been the pain in the thumb joints which had progressed to the point of not being able to open a jar, or the foil on a milk bottle without pain and needing assistance.  I mentioned this to my Oncologist on my catch up call in July. She recommended I change to Anastrazole 1 mg for 3 months to see if that improved the side effect.

I am not claiming that a miracle has occurred as this has side effects as well, but the pain is considerably less and I have regained some mobility of use in my thumbs. I have a call next week and expect to remain on this medication for a while longer to see if this improves further.

 

tappin
Member

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

I was on Accord or another brand for 7-8 months and I could barely walk, the hip and knee pain was so bad I was going up or down stairs one step at a time!. I was advised to come off it for a month then try again, so I told my GP the consultant said for me to try Femera, which is what I am on now- only 5 weeks or so but so far so good. If it means I don't get the horrendous SE I will stick with the Femera. I can't believe a drug with so many SE can even have been licensed!!

Lin wales
Member

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

Been on Letrozole for almost 3 years!  Never feel well unable to sleep through the night, leg pains and worst of all vaginal pain feeling the constant need to wee!

GP's not very helpful!!

Kitkat23
Community Champion

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

Hi there, yes Accord is one of the cheapest but lots of people do ok on it with minimum side effects….including me.  My GP actually said they would consider prescribing femara given my history with tamoxifen ….but I’m going to stick with Accord now as I seem to tolerate it ok….my friend who has same GP is prescribed Femara after bad experiences with 4 other brands….it took a few weeks as the GP had to have it approved by the practice…but all good in the end….it’s like everything in the NHS …there just isn’t the money the prescribe everyone femara intitially unfortuantely

MLT21
Member

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

Hi

I’m about to start Letrozol and have started researching the drug along with reading about SE here on the forum .  NICE (medicinal forms for Letrozole) details the different drugs available and cost.  The most expensive are:

Femara - 30 tabs - £90.92

Consilient - 28 tabs - £84.86

Cresent - 28 tabs - £67.89

Dr Reddy’s - 28 tabs £73.13

ALL the other brands listed are pennies by comparison.  Accord is showing 28 tabs @ £2.75.

It definitely seems like the lowest (generic) cost drugs are farmed out to us, which quite frankly is disgraceful, especially as they seem to cause the most and worst SE’s, from what is being reported.  I think it’s time to bang the drum and get the best prescribed. 

All the best.

Silver6
Member

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

Hi

Sorry to learn you are experiencing side effects on Letrazole. A couple of things I noticed on your answers .... you have said the brand is "Clipa etc" which may suggest you are not being prescribed the exact same brand each month, and that in itself can be part of the problem. If there is one brand that you can tolerate better than the others, ask your GP to write a brand specific Prescription. In my case its Accord, its the most expensive brand but appears to give some women less side effects but the Pharnacist does need a request from GP as its the most expensive brand and pharmacy are supposed to buy in the most 'Economical'. My view on that is 'We're worth it!'

Second point is, try taking it last thing at night, by the time you get up in the morning any side effects may have mostly dissipated.

If you are just now going into the Menopause buy a cold pad to put on your pillow to cool you down in bed and the around the neck type air fans for during the day, particularly during this hot weather. I usually wear only cotton clothing, absolutely nothing with nylon in it.

Hope things improve for you, if not go back and speak with BC Nurse.

Silver6

 

DebbiC
Member

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

Please take part as it may help to come up with some answers and help others:

a) Which Brand of Letrozole do you take ie Accord;

    Cipla etc.  **Femara

b)  What strength is Letrozole prescribed?  ** 2.5 mg

c) Side effects Yes or No **YES!!!!!!!  

d) How long have you taken Letrozole **Since Feb 2022

e) Particular time of day you take your Letrozole  **Morning

Curly Sue
Member

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

PS  I take mine in the morning with breakfast.

Curly Sue
Member

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

Hi Milly,

I started on Letrazole two weeks ago after a WLE  on 20th April for a 1cm lump. Lymph nodes are clear, I will be having radiotherapy but it hasn't started yet. I'm 65 and 17 years post menopause so hoping the side effects won't be too bad but I have noticed fatigue in particular and mild hot flushes. Fortunately no joint pain that I've noticed . I didn't think my Letrazole was branded but i've just had a closer look and its Sun Pharma

Milly15
Member

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

Silver 6, that's OK, I guessed it was meant for me.  Technology is brilliant until it uses its own brain xx

Silver6
Member

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

Sorry ... that was a typo .... of course it should have read Milly and NOT Molly! I don't know, is it just me or do other's find technology usually does its own thing when it comes to changing words and names?

Silver6

Silver6
Member

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

Hi Molly

Thanks for that most interesting catch up on the various Brands you have tried.  I do agree that it's up to women to ensure that they get the Brand that best suits them and not just accept what the GP or Pharmacy are offering or able to obtain because .... ' We are due the very BEST' or at least the Brand that suits us as individuals best!

Silver6

Milly15
Member

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

Hello Ladies,   have already responded to this, but felt I should share this. I have had four different brands of Letrozole since December 2021.  Sun Pharma - for me they are the best no side effects at all: Glenmark - again no side effects.  I asked my doctor to specifically prescribe one of these brands which he did, however, the pharmacy could no longer get them, so they made up the prescription with Accord - the side effects were awful, terrible wrist and hand pain with swollen fingers all of the time, I stopped taking them after two weeks.  Within a day or so my hands and wrists were back to normal.

I spoke with the pharmacy and they advised that I should try another pharmacy in town.  I did and they were so helpful, they had Cipla on the shelf which I decided to try, while they located one of the other two brands, they did and text me to say they were on order for my next prescription.  The Cipla were ok, but I did get mild joint pain, but nothing as bad as when I was on Accord.

I hope this is helpful to others.  We are all different and what suits one can be like poison to another, but my message is, if you find one that suits you keep knocking on the door of your GP and or the pharmacy until you get one that suits you.  We have gone through enough without having issues with the medication that we have to take.

Milly xx

 

Silver6
Member

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

Gosh Carmen, your mother sounds amazing! I don't know what she's eating/drinking but I want to take it too!

I think it would be in your interest to arm yourself with knowledge regarding the pros/cons of coming off your Hormone Treatment Programme as at the end of the day, the decision is one only you alone can make, therefore investing the time and effort of speaking to as many 'experts' and reading up may help you clarify things in your own mind.

Keep well and let us all know what you decide to do.

Silver6

Carmen Verandah
Member

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

Hi Silver6

Thanks for your response. I’m 65, so was post menopausel when I started leterozole.  I had a very late menopause and then took HRT for about 3-4 years mainly because I was sleeping so badly.  I’m now noticing a lot of pain in my hands, feeling very stiff when I wake up, random very short hot flushes, I get tired if I walk far, and I’m doing a 14 mile hike for MacMillan in May. If I crouch down to get something off a low shelf I really  have to think about how I’m going to get upright again and usually have to press on another shelf to get me started.. My hair, which grew back so quickly after chemo that I could almost here it growing is very thin and like baby hair. It has always been fine but I am now very conscious of just how thin it is. Sounds vain I know,  but having lost it all on chemo I would like a bit more now, my scalp is quite visible, and my gets cold!  I must also remember to have my blood tested for cholesterol as leterozole can cause high cholesterol.

 

I have thought a lot about the effects on my body of not having any oestrogen for the next nine years. Obviously, after menopause our bodies still produce small amounts of  oestrogen, and there must be reasons for that and benefits for the body.  I have discussed my PREDICT score with the locum oncologist, but I think I’m going to ring up the Breast Cancer Now helpline and talk it through again with the nurse, and discuss the risks/benefits of stopping   My mum had a lumpectectomy in 1989, took Tamoxifen for 5 years, and then got cancer again in the same breast in 2000. Obviously treatment was different then, but it does make me wonder about continuing with hormone therapy. She’s now 93 and going strong BTW.!

I get by! I do tai chi, yoga, oilates, I paint and draw, work part time, volunteer and I moved to the seaside. I do treat myself to regular massages, but I would like to feel how I felt before starting Leterozole, which was a lot younger.

 One question I have is why  I was only started on letrozole almost a year after my initial diagnosis, rather than immediately,  so my body was continuing to produce oestrogen pre-and postop, all through chemo and radiotherapy?

Will have to read up on that one.

Thanks for listening.

Carmen 🌞

Silver6
Member

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

Hello Carmen

Thank you for responding to my earlier postings. Gosh you have had a very difficult time on Letrozole. May I ask, were you post Menopausal prior to commencing your Treatment? As a thought I've been pondering for sometime was that perhaps women who had gone through the Menopause a number of years prior to commencing Letrozole may experience fewer symptoms as their bodies had already become accustomed to less Oestrogen.  Whereas women who were pre-menopausel or peri-menopausel have an almost instantaneous cut off from Oestrogen, a bit similar to that experienced by women who have a full Hysterectomy with removal of Ovaries.

Unfortunately, whilst this doesn't offer you immediate relief, it may suggest that at some future point your body will become accustomed to the lack of Oestrogen and you will feel more like yourself again.

When you consider the battering the body and the mind of Women diagnosed with BC takes as they go through their Treatment, it's not at all surprising that you are feeling so worn down; stressed and perhaps even a bit depressed. Therefore, in the shorter term I would go back to your own Onocology Team and tell them you are having difficulty coping on Letrozole and ask them for a referral to Services that may help you to manage this difficult period in your life.  It might be a Dietitian; a Masseuse; or Councillor or all three who have experience in this area. Please dont suffer in silence. Do let us know how you are managing.

Silver6

Carmen Verandah
Member

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

Hi Silver

I’m struggling on letrozole

A. I'm now on Femara, having been on a generic brand, having read various posts here, can’t say I personally noticed any difference between the brands to be honest. 

B. 2.5mg

C. Side effects Yes: joint and muscle pain, sleeping badly, brain fog, vaginal dryness, hot flushes and my hair has thinned considerably 

D. Since May 2022 after lumpectomy and lymph node removal, chemo and radiotherapy. Prescribed for 10 years

E. I take it at night.

Sorry to sound so negative! I discussed it at length with locum oncologist and will continue to take it but wish I didn’t have to. 

 

Carmen 

 

Silver6
Member

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

Hi Tappin

Thank you for replying on your experience with Letrozole. May I signpost you to the post I have just added to the thread that you may find interesting.

Silver6
Member

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

Hi Yvonne

Thank you for taking the time to update me on your personal experiences of Letrozole. I too had been told by pharmacists that they couldn't get particular brands but had to take what they were provided with.  I could perhaps believe this during Covid lockdown but on further investigation found a FEMALE Pharmacist who was much more forthcoming and told me each month the Pharmacy Wholesalers have 'special offers' on a whole range of medications and the NHS instruct pharmacies that they must purchase the cheapest brand of Letrozole (or whichever drug) on offer unless a patient's Consultant or GP prescribes a particular 'Brand' rather than just the 'generic' name ie Letrozole.

I think this is ludicrous and is putting Women's lives at risk as 53% of women prescribed Hormone Therapy stop taking it because of the side effects.  It is important therefore that if a woman finds one particular brand has less side effects when she takes it, her GP should make a note on her Medical File's Repeat Prescription that this is the Brand she must be given.  The NHS will pay the asking price for the Brand to the pharmacist rather than just the discount price of a less agreeable brand.

Increasingly I feel Women are being denigrated in Society, and having gone through all the stress and pain of Breast Cancer Treatment, we should be offered the best possible medication that suits us as individuals and not foisted off with 'cut price meds'.  Stand up for your rights, we have ALL paid into the NHS and deserve to be treated accordingly.

Silver6

tappin
Member

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

Hi Silver,

my answers are below, To start with, the first month I had was in an orange/white box, but don't know the make, but I didn't have any side effects that I noticed THEN.

a) Which Brand of Letrozole do you take ie Accord; Now, Pink/blue/white box, Glenmark Pharma.  

b)  What strength is Letrozole prescribed?   2.5mg

c) Side effects Yes or No     Currently yes, tummy cramps, bloating, stomach acid, (having to take Omeprazole now!) pain in and around collar bone and lower leg pain

d) How long have you taken Letrozole        Started beg, December 21

e) Particular time of day you take your Letrozole         At night with BP meds. 

 

 

 
yvonnep61
Member

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

Hi, 

a) Accord at the moment but I have had 2 other brands , unsure what they were. It seems increasingly that pharmacies are having problems with the supply chain of different drugs so I am usually just thankful that they have them in stock. I have not noticed any difference between brands.

b) 2.5 mg

c) The first month was the worst . I had swollen , painful fingers and wasn’t able to grasp things. Night sweats were debilitating, I have vaginal dryness and just generally out of sorts. However I started on ribociclib and 4 weekly Zomata (zoledronic acid) at the same time.

The swollen fingers went away after a few weeks and the night sweats are far less these days. The doc says that the vaginal dryness is definitely due to the letrozole. Replens helps but doesn’t cure.

I am pretty sure these are the letrozole effects as the other things I have such as dry eyes, dry  skin ,splitting nails, constipation and extreme fatigue all improve when I have the 7 day break from the ribociclib so I asssume that is what is inducing those effects.

I definitely feel that my body has got used to the letrozole and as time has gone on the side effects have lessened and I’ve got used to them.

d) 7 months

e) morning

My oncologist talks very enthusiastically about letrozole and I wouldn’t consider stopping it. Ribociclib? Now that’s much harder to tolerate but it’s saving my life.

I was so healthy my whole life but found a lump and discovered I had stage 4 cancer that had spread to my bones. I hate these drugs but there’s no alternative.

Best wishes with your treatment ,

Yvonne