letrozole

[tweeks123]

Morning Waveylocks
just seen your message changed my phone so not sure im getting emails when get comments ..well day 4 for me today on Rads going ok though had good appointment times 11 ish .yesterday I went to another hospitsl miles away for bone scan at 10.15 that was quick when I got there. .then I had a 5pm appointment for rads at another hospitsl miles away I'm back to my 11am again today for Rads.nearly done one week now nothing happening to me yet can feel a thing I'm slappibg Aqueous on day & night and shower/bath with baby soap..still feeling sick from Letrosole bad heads etc.some days different SE.one day I got out of bed felt drunk floor was coming at me it was the first time I've felt like that it was the day after my first Rads..but they say no it will be your Tablets.
Good luck for monday with Rads hope you sort your position out you will get used to it ..its a doddle daily and goes very fast they took some xrays pictures on the rads bed first two days just before rads to make sure I'm settled relaxed in the right position they only took them first two days then said they are happy with them so just the Rads now even quicker. Take care xx

Chrisrine x

[waveylocks]

Thanks Tweaks -Today I got my tattoos...& start rads from Monday for 15 sessions. I was ok but the position is not what I expected according to the physio's so was abit of a shock. At least I've got the rest of the week to practise it so hopefully will find it easier by Monday. Am slapping on Zerobase cream day and night in preparation.... Hope that helps!! Xx

[tweeks123]

I thought three weeks ago I was starting my Rads but it was just to have to tattos and in a scanning machine lazors etc..so today is deffo my rads its for three weeks and im aching like mad too ;0( anyway onwards n upwards from now eh! Have you had your tattoo marks yet ? X

[waveylocks]

Aww thanks Tweaks -& good luck this morning for you too 😊😊. Am hoping I can get into the correct position and maintain it ofr long enough...as my shoulder is still stiff despite physion exercises. My appointment is for planning only this morning so guessing all being well will start in next week. How many sessions have you to do? Hugs xx

[tweeks123]

Moring waveylocks
just wishing you good luck today on you radio therapy hope all goes well let me know how it goes I start mine at 11am Xx

[waveylocks]

Hello everyone,
Well just to let you know that since moving across to Sandoz (which had the same ingredients as Accord) the side effects stopped immediately. Have got to say that the effects were pretty immediate. My GP has popped it on my repeat prescription as she said I had definately had a reaction to that brand and this can happen. My chemist is aware and will order it in for me.....fingers crossed!! Having said all of this have had a pain in my knee fore the last two days....lol!! ...which is the knee I hurt badly many years ago so maybe not related. Have got my déxa bone scan this week so though I take vit D am not taking calcium at the moment (considering glucosamine that heard others are taking) For me the difference between the brands has been enormous so definately worth experimenting to find out what suits best. Though it's early days for me as haven't been on Lexotrole for long..... Xx

[Suziex]

Hi
My consultant told me to take cod liver oil (source of vit D) he told me if I drink enough milk and have cheese and yogurts no need for calcium tablets.
Suziex

[tweeks123]

Hi Sue Im taking codliveroil tabs I will get some vit D tabs.. Im goi g for my bo e scan on thursday this week so they might tell me more .Xx

christine .

[Codiesue]

Morning Ladies, just reading some of your posts I have been on Letrozole for 3 months (Cipla) se's have settled a bit but still got achy joints. My BCN told me it was verry important to take Calcium/VitD tabs as letrozole is known to thin the bones. My dexa scan showed I am starting off with strong bones but still need to take tabs. Sue xx 

[tweeks123]

Hi everyone..
Well I rang Docs and explained the problem with the new batch of Letrozole dhe said she didnt think different brands could cause different SE I explained how I noticed right away so she give me another script I said I will search other chemist to try find accord..after five different chemist I found some in boots ..I explained I need to keep having that make accord they said we just get what batch they send us I explained how bad I was on other batch.they got me to fill a form in so they get all my repeat prescriptions from docs and they have made a note that I need accord Letrozole Halliluya ! So now all I do is wait for text to come to my phone to say that my meds are ready to collect eac h month ..we dobt get told any of these things we just learn from stress running about from one to another so I hope this might help some of you ladies going through the stress of getting the tablets that agree with you ..Beryl I hope you get your under arm pain sorted I think you said you were starting your radio therapy on the 9th same day as me so good luck with that.. Xx

[Matty2]

When O was in the chemist on one of my many trips I pointed out that it was my quality of life they were massing with and I wouldn't have been able to walk to them or anywhere on Accord!

I think I visited all the hosppitls in the trust when I was going through diagnosis and ops. The bone scan (dexa) was a nothing compared to the other stuff.

I do take cod liver oil capsule every day (consultant suggestion) but have not had calcium tablets mentioned yet. Perhaps my lot will compare DEXA results first.

A general qustion - I am havng a lot of pain on moving the arm and shoulder where I had my mastex. No sign of swelling though- suggestions??

Thanks 

Beryl x

[nicky08]

Hi ladies
Hope you don't mind me jumping in here but over the years I've learnt a lot about hormone tablets. Unfortunately I have secondaries but have lived well with them for over 7 years and in this time I've been on two different types of AIs, first anastrozole and now letrozole. In my experience find a brand and try to keep to it as although the active ingredient will always be the same the binding agents eg tartrazine can be different. Also my. GP said that the release mechanism for each brand can be different which is why we all can react differently. Initially I had the branded product, Arimidex, (whilst on anastrozole) but now that is out of licence we seem all to get the unbranded products.
Regarding letrozole I think Accord must be the brand supplied to the hospitals as most ladies get their first prescription from there. Accord did agree with me after the intial shock to the system but I suffered dreadfully on Cipla. Actavis has been OK but Teva has been the best so far and I've heard is the closest to the licences product in its make up. About to start with Sandoz next so we will see how that pans out. I would also say don't put up with the extra side effects - and they are extra to the 'normal' ones - go back to your GP and get another prescription even if you are only a few days into a new box. And, as has been already said, get your pharmacist to write the brand on your notes or at least get them to put on your notes the brands you can't have. We are talking quality of life here, a buzz word GPs should understand!
By the way there are quite a few threads in this section on Letrozole so it's worth reading them to see what other ladies have found.
Nicky

[tweeks123]

Hi Matty2.
Thanks for the advise o the shampoo I will give it a go as my hair is thinning too.As for the aches and pains I dont know if its fro the long hill climbing walks or the tabs ha.Im trying to go for long hill climbing walks most days just to keep me fit hope I can keep them up next week with starting Radio therapy..on thursday next week Im gonna be traveling miles to two different hospitals one for Rads and one for bone scan why they cant do in same hospital is beyond me all together ive been to 5 different hospitalswith my BC.I havbt been given any calcium tabs yet but at the begining they were mentioned..maybe I need to check with my Doc should I be taking them or not I have got myself some codliver oil caps Im taking daily..Xx

[tweeks123]

Morning waveylocks..
Wow looks like things are on thee up for you with your script..Im going to ring doctors today and try sort me a new script out and stop taking these actavis Letrozole and find out who stocks accord..couldnt do it yesterday because I had my mum in my car and didnt want doctor ringing me coming through blue tooth on car radio..As ive kept my BC quiet only my sis and hubby know so you can imagine how hard it has been for me ..ive been off work now about 8 weeks Im climbing the walls ..my doc wobt let me go back untill mu treatment all finished RADS..Ive told my mum ive taken 3daya holl off work so took her out yesterday.but today I will ring docs while Im free..this site as been good for me to talk and learn about BC. And off load and been nice to learn about other people with BC.. glad you got your script sorted i thee end waveylocks take care x

[Matty2]

Hi there

Tweeks

Those symptons and worse, hair falling out and extreme leg pain are what I had with Accord. Just shows how different we all are.

On Teva I can carry on my life much the same as before, back ache sometimes (probably arthritis though) and the odd achey joint when I have done too much (gardening) AND my hair is much better.

Anyone who has problem with hair - daughters partner is a hairdresser and he told me to try Dove Pro- Age (comes n a deep red bottle) that has helped as well.

Hoope your new medication works Wavey locks

Beryl x

[waveylocks]

Oh wow -just rang docs can't get appointment but got phone back today.... And practise sent out a new script electronically to chemist but no one told me...lol. Have got Sandoz in stock so fingers crossed girls that it's an improvement!! Xx

[waveylocks]

Oh Matty2 am so sorry to hear the carry on you have had to avoid a brand that doesn't suit you!! I don't think some chemists realise the difference it can make. Also they often have contract with their suppliers which means they can only stock certain brands -they should have told you this!!! Am on Cipa this time round and it has made me really poorly -last time Accord which I did better on but can't get anywhere round here.....maybe I should pop over your way to get my script next time!!! Lol....xx

[waveylocks]

Sorry for the late reply Tweaks123. We all deserve to be on a brand that suits us the best I completely agree. Funnily enough it was Accord thst my first batch was and was ok but can't get it my area!! (Live in South yorkshire) funny old world this is!! Still trying to get another prescription as was going to try Sandoz as doesnt have tartrazine in it I think it's a problem for me as when I googled it the symptoms I have came upas a side effect of tartrazine. OMG the colouring in the tablet causing problems? Can't they just leave the colour out!! Argggh.
Woke at 4pm double up in pain from the cystitis. Hospital said the type of infection I have should suit the antibiotics they've given me -clearly not working however. Gonna see if I can't see my GP today as can't go on like this!! Sigh

[tweeks123]

Morning Matty2 Im now feeling a big difference on my new box of Letrozole (Actavis) I'm thinking of getting another script and finding another chemist that stocks Accord I'm not gonna wait to get through this months box.ive been woke most of the night feeling sick fur tongue aching joints blisters in my mouth etc etc..I start my Radio Therapy on tuesday this week will pro be changes again so I would like to be on the Accord Letrozole which I've got used to the SE and was coping ok with.todays task ring Docs for another script explain why then search for another chemist who stock accord and stay with them..Im going to feel tired next week with Rads so can do without being awake all night with the sickness etc..I know I feel like I'm moaning about the tabs but sure we deserve to be on the ones we feel ok with..x

[Matty2]

I'm hoping it was a one off. OH suggests I find an alternative brand just in case it happens again. I offered to have any brand as long as it wasn't Accord and that is all that they could be offer!!

May change chemist just seemed not right

B

[tweeks123]

OMG! Matty 2 You are having it bad thats horrid that you have all that running aboit to do not to mention all thee upset thata shocking..no wonder your dreading your next script..I only went to my chemist for my 2nd scrip (as the first script came from hospital) and when I realised that they didnt have accord to offer me as I had got used to the side effects from accord.I explained to the chemist that I wanted to stick with the same brand she even tried to ring the supplier to see if could get accord bit couldnt I ended up with Actavis Letrozole only on my 2nd nt tonight noticed a little difference up to now so looks like I better get searching other chemist before my next months script is due hope I dobt end up having same trouble as you but thanks for warning me ..it gives me time to search other chemist for accors Letrozole tabs. Xx

[Matty2]

Grrrrr!!!!!!

I have just spent a frustrating 10 days with pharmacists and Letrozole

Just come home clutching my pack of Teva tablets .

Ordered normal prescription 10 days ago, giving plenty of time to get correct brand,

Today was the 4th visit to the chemist to attemp to get it. Each time they offred me Accord (really doesn't agree with me) each time they said they would order the Teva brand. Today i am down to my last tablet so was desperate, again they offered me Accord and i refused, THEN they offered me one tablet of another brand - I got very up set and went home. They are messing with my futsoure life here.

OH said phone Doctors so the prescripton person gave me the numbers of other chemists to phone around to see who had Teva brand in and she has also noted it on my records. If I found one with it in stock so then had  to go to original chemist and ask for script back.

Found a chemist with it in, they labelled it with my name but needed script. Original chemist said its all electronic so she could only send it back to the hub. Went to new chemist with a number, they couldn't find me anywhere on the systems AAargh!!!!!

Fortunately was near GP so went there, prescription person gave me a 'token' for th anastrozole , back to new chemist and finally received my 2months supply of Teva brand Anastrozole

Thank goodness OH decided to come with me for final trip as I was fit to break completely.

Am just dreading 2 months time now

[Magical_Moon]

Hello Tweeks,
When you first start taking AI hormone therapy your body can react to the tablets because of their toxicity. They are very powerful drugs which significantly reduce the amount of oestrogen circulating in your body by over 75%. No wonder your body doesn't feel the same!
Some lucky ladies do not get side effects but many ladies do have awful side effects. Different brands can give different side effects and, at first, it is a case of trial and error until you find the brand that suits you best.
Once you have found the brand that suits you, ask your pharmacist to make a note on your dispensing records to always supply that brand. My local pharmacy was happy to do this for me.
Best wishes.
M

[tweeks123]

Hi waveyloxks my first box of letrozole was accord Ive taken for a month now and managed to get uaed to the SE sickness,tired,bad heads,fuzzy ,aching
joints etc..then they changed to actavis Letrozole ive only taken one last night woke early hrs feeling sick got a fuzzy head today and bad headache fingers crossed hope it fizzles out.. I think you need to try and change the make you are on with the rash etc.. its shocking trying to get used ti different brands take care xx

[tweeks123]

Hi waveylocks looks like your having same trouble as me sleeping too ! Where are you getting your radio therapy where are you from ? Would be nice to meet up if same place .x

[waveylocks]

Am on Letrozole but only second month. Was on Accord norons but next pack was Cipa & straight away symptoms came fast and thick:diarohea, cystitis & horrible red rasH on face!!! so think brands can affect you differently. Lol...
Am going for my rad planning on the 9th -so we will be starting rads similar time Tweeks123 -also 3weeks worth. 😊

[tweeks123]

Hi Nenya thanks for the comment I will try to drink more water through the day for the headaches thanks..Ive gone through the menapause thats prob why Im on these tablets. Im 55 bit see myself as being quite fit ive always kept myself fit so this has knocked me for six really Ive been going on long walks most days I wont let this beat me..I will be glad to get back to work my Doctor wont let me go back untill ive finished my treatment I start Radiio Therapy next tuesday the 9th .x

[Nenya]

Have you tried drinking lots more to try get rid of headache? I had one solid for 8 days, upped my drinking and it gradually trailerd off over the next week. I find that it comes back if I don't drink enough . The sort of tablets are decided on whether or not you have been through the menopause. I was given the choice of 5 yrs tamoxifen or 3 years tam and 2 yrs letrozole, or just 5 years let. I decided on the let due to the weight gain with tam. The original brand of letrozole are very expensive which is why you get generic brand dispensed. I was quite fit in January, now I feel 90. If we want to keep living, it's got to be worth it in the end xxx

[tweeks123]

Hi Thanks for the comment thats good you havnt had any SE. How do they decide who has what tablets ? Im hateing taking Letrozole every day knowing Im going to feel sick and banging head stiff joints and tired... ;0(

[CassieB]

No - I've been on Anastrozole for more than 12 months and find that I've jumped from one brand to another about three times. I've also not noticed side-effects from any of the brands so obviously they don't affect me detrimentally.

[tweeks123]

Hi Im jist wondering if Im on the cheap letrozole tablets (accord).. and Im just getting used to the SE. Ihope they dont change my brand on the second packet the packet ive got was given at the hospital chemist when I went back for my results after my opp..Im reading lots of different things o here all about different brands etc..does everyone who takes these tablets stay on the same brand once been prescribed them ?? X