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

Going through breast cancer treatment Hormone therapy
1

Hi Ladies,

I, no doubt like many others wondering whether or not to commence Hormone Therapy due to the various side effects one reads about, however I have been encouraged by the positive postings by some ladies on the drug Letrozole, but am left wondering why some have side effects whilst others very minimal ones.

I’ve set up this little survey to see if it’s based on the Brand or perhaps the strength of Letrozole prescribed

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.

b)  What strength is Letrozole prescribed?

c) Side effects Yes or No

d) How long have you taken Letrozole

e) Particular time of day you take your Letrozole

Thank you so much.

Silver

7 Likes
2

Hi

a) Currently on Sun Pharma brand but have previously had Manx and Accord brands (dependant on which brand chemist has in stock).

b) Strength 2.5 (I believe this is the usual prescribed dose for hormone driven breast cancer)

c) Hot flushes, joint pain (fingers/wrist, feet, heel, knee, insomnia).

d) 5 months.

e) Before bedtime.

Jacqu x

3

Hi

  1.  Cipla

  2.  2.25mg

  3.  Aches in joints, especially wrists and ankles.  Tiredness, fatigue and sleepiness.

  4.  4 months 

  5.   First thing in the morning

I hope this helps and hope you are well.

Jane

4

Hi - please find my reply below.

a. Sun Pharmaceutical - depends what chemist has in stock - have had Pharmadox in the past.

b. 2.5mg

c. Terrible itching, tiredness / fatigue, joint pain, problems with shoulders, low mood.

d. Five months so far

e. I take mine with my evening meal

I hope this is helpful.

5

Yes I am on Letrozole, for almost a year but like all drugs I do not think you can compare how it affects others, it is a very personal thing.

Like with my cancer treatment, if I had listened to others, I would not probably have gone ahead with my treatment, but in all honesty, my chemo, surgery and rads went so well I was left stunned at how lucky I had been.
I had read how other ladies, seen ladies who were treated with the same drugs almost crippled, and treatment stopped, same with the rads - yet I came through relatively safe, tiredness the main issue, but no sickness or anything needing medical attention which I was/am so grateful for.

I have been on 3 different types of letrozole, (made no difference) when I first started them I had sweats, (still, get them but nowhere near as bad) I changed the time I took the meds from morning to late at night when in bed, made a HUGE difference.
You do need to be on them for some time, to be able to really tell if you can stomach them or not, I have read ladies who come off them after two weeks, I think you have to let your system get used to them before you make that decision.
They have made my hair slower to grow back (which does upset me - cannot lie on that one).
At the moment any joint pain is bearable, brain fog yes, slowed me down I think so less energy, but that could also be an accumulation of all my treatment plus I am 64 but a young 64 (I say out loud)
Do I wish I did not have to take them - of course, but then I wish I had never been told I had breast cancer, it is a matter of weighing up all the odds and making that decision - and only you can do that?

Sadly, no drugs come side effect free.

Hope this helps a little.
Big Hugs
Poppy xxxx

6 Likes
6

Hello Silver 6, I have been on Letrozole since December 23rd, 2021, so not long.  The first brand was Sun Pharma, I had no side affects at all, the following month I was put on Glenmark again no side affects.  This last month I have been on Accord and I have terrible wrist pains, they are unbearable most of the time.  I just hope I can get put back on either Sun or Glenmark.

Apparently it is all up to the brand that lands at the pharmacy!!

The dose is 2.5

I take them with my evening meal

I hope that helps

Milly15

7

Hi Silver,

I’m on Letrozole, 2.5mg I have it 1st thing in the morning.

Side affects… hot flushes, no rime or reason why or when.

Achey ankles and elbows.

Headaches

Mood swings- this is the worst for me as I’m an up beat half full kinda girl and I just get so irritated by things I would not normally do. 

I excersise alot, walk, swim and don’t really feel any benefit. 

I had mastectomy April 21 and chemo may-oct and radiotherapy Nov. 

Letrozole started in October with monthly zoladex and 6 monthly zometa.

Hope this helps, nice to know im not on my own with side effects.

Sam 

8

Hello

I have been on Letrazole since August 2021

glenmark, cipla and accord brands

I have dreadful joint pains which have got worse over the last two months. Today I called the breast care team and they have told me to stop taking them for two weeks to see if the pain goes. 

I will keep you posted on how I feel after stopping 

xxxx

1 Like
9

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

10

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. 

 

11

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 

12

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

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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

14

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

1 Like
15

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

16

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. 

17

A. Accord

B. 2.5mg

C. Yes

D. 2 years

E. Bedtime

18

Yes

19

I was taking Cipla brand. Now apparently unavailable. I took the brand thst was delivered to me. After five or six weeks I hurt everywhere and suffeted awful side effects Eventually I received Crescent brand. The hot flushes are horrendous but a lot of the pain has decreased.  Still not sleeping well. Now it seems the Crescent brand is in scarce supply. I really do not want to go through all that pain and discomfort again. I was told I have to find  a chemist who has Crescent brand in stock. 

20

I use the Accord brand and less side effects than Crest?