Letrozole

[suebond88]

Hi Maxy,

i am still on here and do look at the forums.

i am still taking the letrozole, and I take various supplements to help w the side effects. (Vit D, calcium, cranberry).  I’ve been taking it for 2 years now and I think my body must be used to it, however I do still have a few flushes and bone aches (mostly when tired) and the occasional uti.

If you’re really struggling I really would talk to your oncologist......there are several types of Hormone suppressant ...maybe that can Change yours to something that suits you better.

i wish you well

xx

[suebond88]

Hi Patricia,

i too take Vitamin D, and on advise I take a supplement to improve bone density.  As yet, I have not been offered biophosphonates, but they are watching my bone density....am osteopenia, and am due a dexa scan.   I have also suffered with uti’s  so take cranberry as a supplement too.

i’ve been Taking Letrozole now for 2 years, and in many ways my body is used to it.  I do have the occasional flush still and do suffer from aches when tired.  Hopefully this helps...

stay well

suexx

[Maxy]

Hi S,

I know your post was posted a year ago so I’m hoping you’re still on here.

I just wanted to know if you decided to stop the Letrozole or are still taking it? If you did how do you now feel? I’ve been taking it for 4 months now and with the side effects it is giving me I don’t know whether I can continue.

x

[PatriciaMc]

Hi everyone. I was diagnosed 6 weeks ago and had lumpectomy 4 weeks ago. No node removal as all clear. 3 weeks Radiotherapy in January.
have found this thread very useful. I am only on my second week of Letrozole. Cipla. Had a UTI after week 1 but cleared up quickly after 3 days of antibiotics. No joint pain so far. I am taking Vit D supplement and a daily low dose of aspirin 75mg. So far no pain. Some numbness in my hands in the morning but I have had that for a while due to carpal tunnel. More flushes than usual. I am interested to know if any of you ladies take any supplements with the Letrozole and also if you are havimg Bisphosphonates which I have been offered. Any advice gratefully received. Thanks

[suebond88]

Hi,

i’m On the accord brand.  To be honest, i’d Not realised that different brands had different side effects.

amazing how we as individuals react differently to the same drug.

coping with the side effects though, is better than the alternative, so will persevere and take a panadol when I need to to

suexx

[ollisj6]

Hi sue I was diagnosed in November 2014 I started letrozole in March 2015 I felt dreadful at first with the cipla brand and nearly decided to stop taking them but then my sensible side said don't be silly you know what this little drug is doing so changed to accord brand and funnily enough I have really bad ankle pain in my left foot and shoulder pain left shoulder my breast cancer was right side I have started to take the effervescent osteocare from Holland and Barrett not sure if it's physiological but find its a bit easier love Judi x

[suebond88]

Hi Sue,

interesting.  I’m right handed, but my BC was left side?

glad i’m Not the only one  ☺️

[Sue C]

Hi
I'd not really thought about it, but yes, definitely get more bone pain on the left.... In my forearm and foot. No idea why! I am left handed??
Sue xx

[suebond88]

Hi everyone,

i see that there has been no comments on this thread for a few months now.  So hope someone will spot this.

i have been on Letrozole now for just over a year...first diagnosed in October ‘16,  (am now 60), and have had 2 surgeries, chemo and radio.  For the most part I have coped ok with the se’s which for me, include leg aches  (muscular) and joint pains.  My question now is....it seems one sided.  Sounds odd I know, but the leg aches are primarily on the left side.  I do have them on the right, and in my hands too, but it just seems odd that the left side aches more!

anyone else feeling onesided😳

sueB.

[sbric]

Hello Ive been taking Letrozole for several months after problems with Exemestane and another inhibitor that I cant remember.  I have been very fatigued to point my Oncologist order blood work, fortunately all is ok-a little low WBC but he indicates not a concern.  Also experiencing foot and ankle, hip and back pain but have basically ignored all, Im in early 60's and a rehab therapist demanding a lot from my body when I treat my patients.

He didn't even mention it could be the medication.  What is the name of the tumeric paste, I would like to try that.  I work with a Natural path associated with a Cancer hospital in Seattle Wa, she has had me on "My community (mushrooms) for fatique-Ive been on that during my 1 year of chemo 4/14/-4/15 till present

All the best to all

S

[Jaynewill]

Hi juliewuile

Thank you for your Feed back, I will keep you all up to date with the brands I use, let’s hope this is me just getting used to them and the feeling I have will fade, I really hate feeling this way, it’s just no me. Xx

[Juliewulie]

Jayne

I'm feeling the same. I too have read the same about different brands. I know we are all different but from what I've read Accord are suppose to be quite good. I had them from the Cancer hospital but am now on another brand- Manx. I don't find these as good but I'm unsure if it's the brand or Letrozole getting into my system. 

Let me know how you get on as I too am new on here.

[Jill1998]

Hello Jayne ,welcome to the forum .I didn't end up taking Letrozole so can't comment but certainly found different brands of Tamoxifen affected me differently so it is wort experimenting .The emotional side effects are very hard to deal with hope you find a brand that suits you soon.Jill x

[Jaynewill]

Hi everyone, I have just joined this group and find all your comments very handy, it’s interesting seeing how everyone seems to suffer differently with different brands of lexarole.
I have taken two brands accord and Cipla, I’m currently back on accord,but I seem to be struggling with feeling insecure and emotions, to the point I just break down and feel so angry, has anyone else suffered like this ? My breast nurse has said I need to give each brand a month to see how I feel, I just hate feeling like I am at the moment, any comments would be greatly appreciated
Thank you 😄

[Miffy]

Hello everyone. I had a mastectomy on January 30 th and have recovered well. I had a large amount of dcis They found 2 tiny tumours which were tested. fortunately I only need to be on letrozole. I started  it last Thursday. It’s early days yet and I haven’t had any side effects. It’s very interesting and helpful to note all your comments. Thanks a lot, I’ve found this website excellent, helping me through my journey. Very best wishes to you all. Xx

[Lynnq]

Hi

l live in a village and our GP dispenses.  My GP actually printed:-

Femara 2.5mg tablets (NOVARTIS Pharmaceuticals UK Ltd)

on my prescription they didn’t keep it in stock but ordered it -took a little longer and they sometimes gave me a script to take to the nearest town - but usually they managed to get it for me.

I do believe that if the GP specifies this on the script that is what they have to give you.

x

[Lucy Lu]

Annie,

I have problems with certain brands of Letrozole and asked my Pharmacist if he could order a specific brand for me and he said he was not able to as they just ordered "Letrozole" and were not able to order specific brands.  Do you use a bi chemist to be able to pick the brand you prefer?

[Lynnq]

Hello everyone. I was on letrozole for almost five years after finding secondaries soon after initial Dx. No chemo - bilateral Mx then letrozole. It kept me stable until a few months ago.

I am post menopause so no problems there.

For the first few months maybe up to a year I had dreadful joint pains used paracetamol and naproxen and bought a stick. I kept a record though and after a few months it was apparent that pain was worse when I was not prescribed the NOVA (original) brand. So my Onc wrote to my GP and asked them to only prescribe that one. GP was fine and put it on my prescription- the practice manager did tell me a couple of times how expensive it was.

After that the joint pains were better and just needed painkillers occasionally onally. And I put my stick away.
I stopped taking it last November and have hardly any joint pain now, and I am in my late sixties.  Just started chemo so will see what that brings.

I would recommend keeping a record of brands you use and asking for the ones with least SEs

[Over70]

Hello all Letrozole takers.

l am pondering on this little essential pill. It was handed over so casually 11 months ago. Just take this for ten years and no mention about the possible side effects. 

Since then my optician observed a deterioration in my sight,  and told me it does affect your eyes. My dentist noted it with relish on my records, my arthritis is now so painful l am going for knee replacements. Went for my pre op yesterday and in a year my blood pressure is high. So off to GP to get it sorted,before the operation.

Now is there anything else!! Of course it could be my age!!

What else does that little yellow pill have in store?

On the other hand ll’m still here and enjoying life, so should stop moaning!

[NorthernGal]

Hi Susank

Sorry to hear the MED has affected you in this way. I've been taking Letrozole for 4 wks now and apart from a few spots which I haven't had since my teenage years (I'm 52) I haven't experienced any SE. I do have back pain but have had this for years and so far it isn't any worst. I appreciate I still have a long way to go and am grateful to everyone who has posted about Letrozole and it's SE which will help me to cope with any SE.

Sending best wishes to all  xx

[Anniej]

Ladies, I must be one of the lucky ones with few side effects after a year of Letrozole. I'm 71 so I put my bit of joint stiffness down to that! I did chop and change brands, however, to get to this stage. Teva is best for me, with Accord a close second. I walk every day, and attend TaiChi and yoga classes as well at my local Maggies. I was told this would help with joints and pain, and I believe it does. I'm sorry to hear your experiences and hope that there is something else out there for you. Hugs. X

[Carolyn52]

I have been taking letrozole for over 2 years and just accept the side effects as part of my treatment But this week I got a tummy bug and could only keep sips of water down so missed my letrozole for 3 days ...well no back ache or other pain until I started back again.
Unfortunately I have secondary bone mets and need this little pill to keep control of things but thinking now the letrozole is causing more pain than the actual mets are !!

[Dusty]

hi Susank

sorry to hear this, have you spoken to your Gp or consultant about this. 2 years is a long time of misery, we woomen do put up with alot you know! I've read that some women change their medication, or reduce the 2.5mg tablet. I've also read that it is a harsh drug not only for the side effects but also for how it stops oestrogen twice as much as tamoxifen, so more effective than tamoxifen.

I'm week two of taking it and already left leg, shin and knee are affected with pain and stiffness. Having to take painkillers to manage. I've had many sport injuries, vit d deficiency so aware of my pain thresholds, seems to be quite severe already and scary:(

I am almost 60, have wondered how I'm expected to take this for a decade without a serious loss of quality of life? I'm going to consider reducing the drug somehow,

Any thoughts from others appreciated on the thread,

hugs and keep on trucking!

[Susank]

Feeling overwhelmed. Have been taking femara for over 2 years. Insomnia, fatigue, weight gain, joint pain in hands, and now severe lower spine and hip pain. Loosing weight by regular exercising but the joint pain is overwhelming. Started taking Tumeric and going to a chiropractor. Can’t believe how many women have the same struggles with this drug. This is heart wrenching to make a decision of stopping the medication - knowing that this increases your chances of recurring breast cancer. As a nurse, I know he ramnificarions but the quality of your life is so affected on this drug. I often wonder how this MED received FDA approval.