To all ladies on Letrozole.......

Hi 

It's letrozole reducing oestrogen that causes hot flushes. During menopause oestrogen reduces and a symptom of menopause is hot flushes. I was told by a doc that oestrogen keeps thing moist ( not saying a word, wink wink say no more) dry things rub and irritate( wink....) hence painful.......... joints!!!!!!!!!

I now have four trigger fingers on right hand. I walk like a woman thirty years older. Went to GP for help was given an alternative to ibuprofen now having acid reflux. So back to bad feet. I can get rid of the pain with wine in moderation and side effects are more pleasant.  Just got to wait for gullet to heal.

Don't get me started on pain in feet can't walk bored so comfort eat which means more weight for joints to cope. Except pain in feet means can't walk ,bored comfort eat. Wow weight gain a SE of letrozole. I could knit or sew to relieve boredom which irrated trigger fingers so bored so....

.......... Like my mate says " life's a bitch, then you die"

Ladies,  I truly have great sympathy and understanding with those of you who have huge SE with letrozole. But it's not all doom and gloom. I've been taking letrozole since 2015 and I've had just about every brand on the market with very few effects. I also appreciate that I'm in a very small minority here. 

To be honest, I’m 74 and prior to all this I felt like about 34 but now I guess I feel about 50-ish, perhaps a bit more. 
I think age is a bit of a shock (certainly looking in the mirror is!) and it’s tough to realise I can’t do as much as I did but hey, I’m still alive and kicking! 
hugs xxx

hello

well, we are similar age - I'm 72.  yes, age is  a shock,  but its also a state of mind.      Like you, I was determined this cancer and masectomy was not going to beat me.     so, stay positive.

I am going next tues for a breast reconstruction        I had the cancer just over 4 yrs ago,  and decided it was time for reconstruction.   hope I am doing the right thing,  but, hey ho, I am going for it.     

hugs back

xx

Owww ladies, like says 'it's not all doom and gloom'.  

We class the aches and pains as 'side effects' ..... are they really all 'side effects' or are most how our bodies actually react and feel with less oestrogen in it?

I have always felt younger 'mentally' than my years.  My body, well though junk eating, sedentary working, laziness, well my poor body has always felt older than what it is - but my mentality as always got me by, my joking about and wanting to laugh .... this said....

The less oestrogen we have in our bodies now from the letrozole is actually less than we would have for any of our given ages.....
So our bodies are going to be feeling a lot older, the letrozole is doing its job of reducing our oestrogen and we know this because of what we class as 'side effects'.

In truth I think some symptoms we all experience can be side effects to, for example, trigger finger - I reckon that is due to large amount of oestrogen coming out of body instead of gently how it would come out over a matter of years.

After reading some of the posts, I wonder too.... we are all different in what we eat, how much we exercise, how much we sleep, how much we stress, if we smoke, if we drink alcohol, if we don't smoke, if we don't drink alcohol, if we eat loads and loads of chocolate (got carried away with this one and the next one>>>) if we eat loads and loads of crisps, if we eat vegetables, if we don't eat vegetables, what supplements we take, what supplements others don't take....

I wonder could these all play a part in why some of us suffer more than others, some less than others? 

What I will say is, take it one day at a time, you can do this and remember two things 'it shows the tablet is working' and 'this tablet is your friend, this tablet is planning to prevent any reoccurrence  

Sending love and hugs  xxxx

Hi, Ive just started taking Letrazole and so far just felt nauseous and not able to eat breakfast in the morning...I have been researching different brands of Letrozole and the supplements people take.

My breast surgeon has discharged me back to my GP following mastectomy 3 weeks ago as tumours only grade 2 and nodes were clear.

I know my GP is not an expert in drugs and side effects so I would be interested to learn what people take for supplements. I have  bought some calcium and vitamin d3 but not sure if should be taking anything else?

Also the brand I was given is Cipla but have read less side effects with Femara and accord. Any comments welcomed.

Carol x

Hi Hope4today/ Carol,

I researched too, in April 2018 after my Mx (and implant) proved my cancer was 8/8 for oestrogen. Femara is the brand name, all others are generic. I learnt that the one generic Letrozole which seemed to give least in the way of untoward side effects for most ladies was Accord brand and I’ve managed to stick to that one. 

I take a fair few supplements, partly as I already had osteoporosis, for a good 4 years. So together with the Alendronic Acid for that I take a Rose hip supplement and Loratidine (together with sufficient calcium and D3) and with BCN approval I added Glucosamine with Chondroitin, also took a course of vitamin B12 as it seemed my feet and ankles stiffened as if they were swollen (they weren’t).

Hubs laughs and says I’m daft but I think it all helps so carry on!

hugs xxx

Good Morning All:  Hope4today it's been quite some time since I've been on here, but I wanted to put my 2 cents in as I'm getting somewhat differing advice than those of you in the UK.  Not that I'm saying you should follow what I do, but I believe that all information is valuable.  I'm now nearly 3 years out from my original diagnosis and have been on Letrozole most of that time.  Side Effects rarely come from the Letrozole itself.  It's usually the fillers that are included in the tablet that affect various people in differing ways.  The one thing for me that has manifested itself from the depleted Estrogen levels is dry skin and my nails (both hand and feet) are deplorably dry, thin and cracking.  I have to keep them clipped so short I have no free edge on my nails.  And polished to keep them from tearing.  Even scratching an itch will rip them.  My oncologist kindly switched me from Letrozole to Exemestane for 2 months, but I began having headaches every day, so I'm back on Letrozole again.  Better the devil you know I say!  

Well that was a long introduction!  I've been on various brands of Letrozole and some manifest Side Effects much more strongly than others.  I had no effects from Femara brand, but it's horribly expensive and rarely is prescribed.  My brands might be different as I'm now on the Breckenridge brand and it's OK.  AvKare was horrible for me.  I did a study on exactly what fillers were in each of my brands and the ones that I reacted badly to all had Aluminum Blue Lake coloring in them.  My assumption is that I'm allergic to it.  My oncologist agreed.  If you're having a bad reaction you could consider doing an ingredient study and presenting it to your oncologist or to your pharmacy or whoever prescribes for you.  Then avoid those particular brands.  The other thing you can do is address the symptoms.  If you have arthritis you've got to push through it.  I know it hurts.  A lot.  Soft yoga or Tai Chi can help a lot.  I do both and also walk minimally 7 miles a day.  The dry skin is an issue too.  I use coconut oil all over my body.  Hubby says I smell like a pina colada!  I don't much care.  It works very well for me.  And the one I get is cooking coconut oil, so it's very inexpensive.  All the expensive ones didn't do nearly so well.  At least for me.  So try various things for each symptom.

As far as supplements, we don't get the infusions here in the States.  I take Vitamin D3, Calcium, Glucosamine with MSM, a statin and low dose aspirin every morning with my Letrozole.  Then I eat a light breakfast and hit the chores.  I'm doing really well on those things.  I get mammograms every 6 months here, and contrast MRI once a year.  Thus far no cancer return.  I've lost nearly 30 lbs by being more active.  My Dr. said that fat itself produces estrogen, so it was vital for me to lose some.  I still have another 15 pounds to lose, but to be honest I'm healthier than I've been in a long time.  ALL of my body functions are doing extremely well.  

I know I tend to write long notes, but hope there was some helpful information in there for you!  Hugs from across the pond!  Dottie

interesting to read your comments, Dottie.

Like you I am on Lexatrol (Accord).    was diagnosed with breast cancer, one side, -  in 2014.    had masectomy and ALL my lymph nodes removed under the one arm.

think I must have - and still are - one of the "lucky" ones.    chemo / radio / herceptin jab  didn't give me too much of a problem.   I was well looked after and during therapies was given anti sickness pills.     strangely, the worse thing for me was, not the breast cancer, but loosing all my long hair - every single hair !!!!  bald !!!   what a shock , even though I knew it would happen.   luckily, wigs nowadays (and we in england get them cheaper on NHS) - are much better than the old days.

anyway, my hair has grown back - albeit with a couple of bald patches which I can cover up.     Lexatrol gives me no problem at all, my nails are still strong, and even though I was told I could have lost all my nails through treatments, I never did - just my hair.     yes, my skin is dry,  but then it always has been.   and I get a special cream, on NHS, free,  which the dermatologist recommended.

I developed Lymphoedema in arm, through no lymph nodes,  but its not too bad and , again, our NHS system lets me have compression garments free.     we have much to praise for our NHS.

I, too, take calcium and vit d combined pills - again NHS.   a statin pill  (no aspirin).    I have and still are slim and do not sit all day feeling sorry for myself.     my attitude to life is,  "yes, I had masectomy" but  getting depressed about it does NOT help - you cannot make it go away, it happened - try and live life to the full - you only "come round once anyway" and it all goes so quickly.    I believe, if one can have a positive frame of mind, the rest will follow.

sorry for all above,  but trying to "help" ladies who might not be able to "pick themselves up" as quickly as I managed.    think positive ladies = and enjoy life !!

by the way, after all this time, I have decided to go for breast reconstruction - going in 29 Oct - not an implant - they are taking it from my stomach.   this is not for cosmetic reasons, by the way,  I have been told that POSSIBLY it could help my arm lympho, if the plastic surgeon is able to take some lymph nodes from stomach up to under my arm.     anything is worth a go !!

pam

well, Moomy

nice to read more of you comments.

you sound very positive - good for you.

pam