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

Going through breast cancer treatment Hormone therapy
21

Yes, brand Accord ?

22

Thank you for sharing this.Ā 

23

I am on Accord too. I get quite a few side effects but now take ibuprofen to reduce these. I do rattle though, as I now take quite a few extra medications to deal with the side effects of the others!

Seagulls

24

Thank you for this.Ā 

25

Hi all,

I started on Letrozole after my WLI surgery last April . For most of the time Iā€™ve beenĀ  on the Sun Pharma version and Iā€™ve had some join pain but nothing unmanageable. As Iā€™ve got some mild/moderate arthritis in my knees and hipsĀ  its hard to tell whatā€™s causing the pain!

For the last three cycles Iā€™ve been on Accord. I know my pharmacy and others in my bit of the East Midlands ( Derbyshire) are struggling to get hold of any Letrazole and so are taking whatever they can get.Ā Ā 

I know others here have had good experiences of Accord but it really doesnā€™t suit me, all the aches and pain are worse and Iā€™ve now got joint pain in my hands which Iā€™ve never had before ( noticeable when I wake up, then easier over the course of the day)Ā  and pain in my right ankle , which Iā€™ve also not had before.Ā  Ā My pharmacist has made a note on my records to get Sun Pharma for me if he can next time, it will be interesting to see what difference, if any that makes.

Weā€™re all so different arenā€™t we!

Is someone collating this informationĀ  to feedback ?Ā  I havenā€™t logged on for a little while , so Iā€™m not sure who it is thats asking us to take part or why?

26

Thank you for your reply.Ā 

I am sorryĀ  that you have new pains due to taking Letrezole. I too have arthritis and like you say any new pain is worrying when you have had cancer. Quality of life suffers too.

I am still waiting for a suitable brand to be found for me locally. Worried I may run out of tablets.

I hope you get some relief from your pains soon.

27

Iā€™m late posting this but told all letrozole have same constituents by one pharmacist and yet another one said NOĀ 

I ve tried 8 brands and last two GLENMARK and BRISTOL both have different constituents in fact Iā€™ve also had ACCORD , DR REDDYS, CIPLA, SUNPHARMA , AURAMOX and CRESCENTĀ 

GLENMARK is my bestĀ 

28

Iā€™m late posting this but told all letrozole have same constituents by one pharmacist and yet another one said NOĀ 

I ve tried 8 brands and last two GLENMARK and BRISTOL both have different constituents in fact Iā€™ve also had ACCORD , DR REDDYS, CIPLA, SUNPHARMA , AURAMOX and CRESCENTĀ 

GLENMARK is my best take in late morningĀ 

29

Thank you for your reply.Ā Ā 

I was on Cipla but apparently those are now unavailable.Ā 

Currently taking Crescent brand.Ā 

30

The pharmacists are both right and wrong!Ā  What is IN the tablet is the same, itā€™s whatā€™s OUTSIDE the tablet is the problem.

Each company coats the tablet with itā€™s ownĀ  proprietary coatingĀ  which is why changing manufacturer causes such problemsĀ 

Ā I got changed from ACCORD to SUN some months ago, and boy did I notice the ramped up side effects. Now my prescription states ACCORD only.Ā 

Hope you can keep with the one that suits you.

31

Thank you so much for this. Some people do not understand the difference these things makeĀ 

Take care .Ā 

32

this really does mirror my experience,no sickness and no radiotherapy burns(Im 75 and must be a tough old bird).Im on the sun letrozol and only for a few weeks so far.The tiredness took me by suprise but I guess I expected the hot flushes ,the aching joints are worse some days than others.I was interested to hear you say the letrozol was better taken at bed time,does this help with the lack of energy?The hair is taking its time coming back but its better than the bald head.As I said I am only 75 and not ready to retire to the sofa just yet.Thank you for yourinformation ,it has helped me a lot. Jennifer xxx

33

I take Sun Pharmaceutical, 2.5 mg, was told by oncologist to keep to same brand and the pharmacy has it on my record.

Side effects of pain in hands, insomnia, sweats, fatigue

Been on it nearly a year.

Take at bed time as this was advised best time to take it.

I would rather not take it but know the impotance of it.

34

I was on Cipla but the phsrmacist couldnā€™t get them so i was switched to Crescent brand. The side effects were pretty bad. My consultant advised me yo stop taking Letrezole for 6 weeks. The joint pains, brain fog etc have practically gone but the hot flushes have hot much worse. He suggests that the hot flushes are down to me, not Letrezole. He now suggests that i should start taking Exemestane in place of Letrezole.
Any help about this would be really appreciated.
Thank you

35

I have tried all 4 hormone treatments - the side effects were all mostly the same but with varying intensity!

Anastrazole was the worst - horrendous aches and pains and more, then I tried exemestane which was better, but still not brilliant, then briefly tamoxifen and finally, Letrozole which was the least worst in terms of obvious side effects

So donā€™t worry about changing, exemestane and letrozole both do the same thing. Again, do watch your brand. I am on accord - a brief foray to Sun was not nice and my prescription now specifies accord.

36

Thank you so much for your reply. It is really helpful.
When I do start the new tablet i shall make notes about any effects I experience. I feel this will help me.
Thank you again.

37

Yes, for 18 months i take 2.5mg evening. Hair thinning only side effect with Crescent but lots of pain and dryness with Accord. Pharmacist trying to source Crescent with diffuculty.

38

Hi Silver

I really welcome this survey and look forward to seeing what it brings. My answers below:

a) Amarox
b) 2.5mg
c) Side effects. Joint and limb pain. Becoming quite severe now and Iā€™m thinking itā€™s affecting my quality of life. Also weight gain.
d) Been taking it daily since February 2023
e) Morning but having read posts on the forum about it Iā€™m going to try taking it at night to see if this helps with SEs.

There are other SEs Iā€™m experiencing like brittle nails and proneness to skin infections but this may be due to other treatments rather than the letrazole (?)

I am also still having 3 weekly herceptin jabs post chemo and bilateral mastectomy, and take Amitriptyline for residual nerve pain from the surgery. So itā€™s difficult to know what is causing what SE. Only two more rounds of herceptin so at least I can knock one of them off the list and am trying to reduce dose of Amitriptyline to see how that goes.

Iā€™ll speak to oncologist about it all in a few weeks. Iā€™m reading some research papers to try to get more background on it before making any decisions. Iā€™m also wondering about dietary changes that may help (I do drink a LOT of coffee and have become addicted to chocolate again post chemo!)

Good luck with your survey

Mandy

39

Great survey. My answers as below.

A. Sun Pharmaceutical. First packet, so will see if I get the same ones when I get repeat.
B. 2.5mg
C. Side effects: Hot flushes, bad for first two weeks. But they seem to have calmed down now a bit. Joint aches, wrists, ankles, hips. Mainly at night, but sometimes during the day. Walking and exercise help a bit. Hope to go back to the gym, so will see if that helps. Hair dresser said my hair is very fine now, so hope it does not thin too much. Some stomach cramps, but not sure if it is the pills or IBS symptoms.
D. On third week now.
E. Find taking them at night around 9pm, seems to work well. Hot flushes for first hour, then ok. Aching at night though. But would rather have that, than during the day as much.

Best of luck with the survey.

40

Hi Silver 6
I am on Accord brand letrozole 2.5 mg which I take at night. I started taking it in April 2020 and my oncologist recommended taking it for another 7 1/2 years. I have mild hot flashes, joint (mainly knee) pain and mild muscle pain. I take one tylenol only after a lot of physical activity and my water bottle comes in handy as well. Hope this helps.