Member
Posts: 69
Registered: ‎31-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Great thanks I will start tomorrow night then 😊
Community Champion
Posts: 1,752
Registered: ‎19-08-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi pippi
It seems to be best taken in the evening, with food, which prevents the nausea.
Sue xx
Member
Posts: 69
Registered: ‎31-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you Bella99 I will just see how it goes hopefully I won't have too severe side effects.
Member
Posts: 69
Registered: ‎31-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Well I'm starting my Letrozole tomorrow is it better to take them at night or is there a better time when to take it?
Thanks
Member
Posts: 69
Registered: ‎31-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Loolarch yes never thought that. The people who do alright won't post on here as they feel ok and it is usually when people have problems that they post here for support.
Will start mine tomorrow 😊
Member
Posts: 69
Registered: ‎31-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you Ali49 that was really helpful as I was quite worried about taking it. Yes I will try it out and see what happens 😊
Member
Posts: 1,206
Registered: ‎17-09-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Pippi, it is all individual i think. I have never had nausea with letrozole. I take it every evening with my tea. The bone pain is my weakness i think as i had it through chemo too. I dont have hot flushes either. Dint be put off just give it a good go xc
Member
Posts: 26
Registered: ‎17-08-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Pippi

 

I've been on Letrozole for three months now (two different brands so far, and no difference between them) and side effects have been very little problem. I do get hot flushes but no worse than I experienced during menopause. I think Its likely that people who are having little or no problem are probably not even looking at this forum, let alone posting, so you might get a biased view of the likelihood of problems. 

 

Good luck xx

Member
Posts: 19
Registered: ‎10-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Side effects have got a bit better on letrozole.  I also think the impact is very dependent on how far into the menopause that you are.  I think I also suffered horrible symptoms at the beginning because before being diagnosed with breast cancer i had been on HRT for two years.  So the combination of losing HRT and a drug that takes away oestogen was pretty grim.  I did also get bladder infections at the beginning.  Symptoms have got better over time although there is an ongoing impact on my bones and I am do get more sweaty and tired (though tiredness could also be down to the surgery).  As I have mentioned in an earlier post I do not think I will be on Letrozole for 5 years but might be on the drug for 2 years (which I understand is the most productive time).  So you may be lucky and you may not get many symptoms or they may be controllable.  Whether you stay on the drug is a different matter - and that I am sure will depend on your risk factors and the impact of the side effects.

 

All the best.

Member
Posts: 69
Registered: ‎31-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi I have been prescribed Letrozole today but not started them yet. But reading on here it sounds like this drug is going to give me a or of pain, fatigue and possibly nausea. For me the nausea would be the worse. Is there anybody o here that actually can say that they are managing ok with the side effects or the side effects got a lot better after some time? Bit worried now really...
Member
Posts: 1,206
Registered: ‎17-09-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thanks for replies. I am on the accord brand and dont want to change! I will ploigh on and try to get through! I will ask my onc about predict though. I have signed up for couch to 5k starting tonight so will see how that goes too and i will remind myself to drink more as that is something i do forget. Goid luck ladies xc
Member
Posts: 67
Registered: ‎27-08-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Ive only been on letrozole for 3 weeks but I'm already taking carbimazole for overactive thyroid. This has the same side effects so now I'm getting double se. I'm hoping it will settle down like the carb did (been on these 10months)

I try to go for a short walk each day and drink plenty of water. I'm also using muscle rub on knees, calfs and ankles and toes this helps. I take 2 naproxen before bed too, it's manageable but when I get new prescription from docs I'm asking for Accord brand as the hospital have me Crescent.

I've already asked the pharmacy if they can supply it and theve made a note on my record.

I'm almost 61 and thought I'd got past all the hot flushes etc but theve kicked in again. Got a mini fan to use again. Also if my joints get cold that makes them worse or if I'm not very active. I sit and craft a lot but the walks help .

Just hoping things settle down eventually. Going for my planning session on the 2nd Oct for radiotherapy. All done for xmas and feeling better,
Fingers crossed.

Susan x
Member
Posts: 19
Registered: ‎10-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have also been stuggling with Letrozole which I started to take at the end of May. 

 

I had a second opinion from a different oncologist about the need to take the drug and how long.  She also went through the NHS predict tool about reoccurence. Basically Letrozole is about protection from reoccurence.  You are entitled to get a second opinion which I found really helpful

 

I have also returned to work and I am struggling with tiredness and pain in my joints.  I will be taking a view going forward iwhether taking the drug is tolerable to my quality of life.  I may also ask to try another drug in the Letrozole family.  I will also consider whether I take the drug for the full five years.  I doubt whether I will as I have a low risk of reoccurance although the drug is protection for the longer term (15-20 years).  Apparently the drug does the most good in the first two years (they say 2-3).  The predict tool helped me really see my risk and allows me to think about my risk of staying on and coming off the drug.  Infact even though i am low risk I am prepared to stay on with the drug and have the side effects for the time being.

 

So you might want to get a second opinion including using the predict tool of your own circumstances.

Community Champion
Posts: 1,752
Registered: ‎19-08-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Morning Ali
Letrozole is very challenging that's for sure! I've been on it almost 2 years now, and I struggle with fatigue, bone pain and muscle aches. Sadly, I don't think it's possible to go back to the way we were before bc. Hormone therapy gives us a new normal.
What I would say is try different brands. I'm on accord, which seems to be one of the better ones. I had crescent once, and that was awful. Also, try taking the pill in the evening, with food. This seems to help.
I don't have any magic answers for you ( or for me!)I'm sorry to say. But personally I would rather the side effects, than risk not taking it.
Best wishes
Sue xx
Member
Posts: 1,206
Registered: ‎17-09-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello all, i had grade 2, stage 1 idc, er+ 5/8 and her2+. This came 1 year after being treated for DCIS, a lumpectome and 15 shots of radio.

I finished chemo in january and had a masectomy in feb. I started letrozole in april and have had 13 herceptin with 5 left to have.

Within days of starting letrozole i could barely walk with the pain in my knees. However it did improve after about 10 days.

5 months on though i feel wrecked. I am constantly tired, my feet and ankles ache and my legs feel like lead. By far the worst thing at the moment though is my shoulder pain. My right shoulder, surgery side, is the worst. I cant reach up, i am struggling to put my bra on, if i reach sideways it feels like my shoulder is broken! I cry all the time!

I told my onc nurse and she said its 'disappointing' that i'm not exercising so to go swimming and come back in a month!

People think chemo is over and we are ok but i said to my husband today that i think i feel worse now than i did when i was having chemo! Is that awful to say?

I am totally fed up of moaning!

I returned to my teaching job full time in Septembet and i am wondering how long i can keep going. I am trying to keep a brave face on!

I am going to try pilates this week and find a swimming pool that i can walk into and not go down and up steps to get in and out of!
Member
Posts: 37
Registered: ‎01-06-2017

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Try Planctur 39 for the hair. I use the shampoo, conditioner and also the daily tonic.. I think it has made a real difference to mine x
Highlighted
Member
Posts: 37
Registered: ‎01-06-2017

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I started running in Jaunuary and I've been on letrozole for 1 year, switching to Accord brand a few months ago as Cipla was horrendous. I have now started to get severe hip pain on right side only. Had an MRI last week as they have found a cyst in my right thigh but doesn't look sinister. They have just tried changing to another brand when the pain stopped for now. I say that it's the medication and attacks one joint after another. Is anyone else having the same problems? Oh and the depression and heavy head is horrendous and making life miserable. With the hip problem I have had to stop running for now, which isn't helping with the depression.......one powerful little drug 😥
Member
Posts: 1
Registered: ‎17-09-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi

 

I am in exactly the same position as you and on the same drugs. How are you getting on now?

 

Anne

Member
Posts: 9
Registered: ‎15-11-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Suemolly1

 

Interested to hear that the change of brand of the Letrozole made a positive difference for you. 

 

It is indeed a very powerful drug with a variety of side effects (none of which seem to be good).  I would be interested to know what vision problems you have been experiencing.  Since you are also suffering migraines, it sounds as if the vision is associated with that. 

 

I have experienced problems in my field of vision and have been diagnosed with glaucoma - this is apparently a slowly developing condition, yet it developed within 2 years' of my starting Letrozole.  I suspect a connection with the Letrozole, but since few patients seem to report vision problems, it is difficult to establish if this might be the case. I hope that your vision problems, like the migraines, are only temporary.

 

My vision problems however, are not temporary.  I am now suffering daily soreness and occasional clouded vision as a result of the glaucoma drops.  I have to have regular eye tests to continue to be able to drive. In other words, my independence is under threat.   It is ironic that my current discomfort may be the result of addressing the side effects of the cancer drug.  Especially so since I was assured after the operation to remove what was a very small grade 1 cancer that I no longer had any cancer and that the drug was just to prevent the possibility of it recurring.  

 

I have stopped taking Letrozole but I think I may have suffered permanent damage - not only to the eyes (which may be coincidental) but also to my bones, as the CT scans show I have the beginnings of osteoporosis.  Yet there was no discussion of the side effects of this drug - it was just prescribed routinely.

 

These posts show that there are many reported side effects and many women who are having to endure them.

Member
Posts: 1
Registered: ‎30-08-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi, was on the Accord brand of Letrozole for 6 months.  The first two months, I was fine and suddenly I couldn't walk and the pain in hips and back unbearable.  My doctor and oncologist kindly switched me to Femera, the original brand, and the difference was unbelieve.  I am back to walking the moors again and no pain in hips and back. 

 

Not all plain sailing though - I am suffering terribly with vision problems, migraine and low mood.

 

I hope you feel lots better soon.  it seems a long journey and not what we all expected.  Take Care. xx