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

hello  greta

I too had breast cancer - consultant said I'd only be on Letrozole for 5 years.

I note you - and some other ladies,  seem to be on cancer pills for a lot longer.  I am wondering why this is, especially as you have been on it for 10 yrs and possibly permanently.

pam

I was told I'll need to take Letozole for as long as I have injections to put and keep me in menopause...5 years probably won't be enough, (as at 55 my periods could start again) I was 49 when I was diagnosed. So basically it's all age and hormone related.

dear pansy 2468,

Thank you so much for replying as I am finding this letrozole dispute so disturbing.

I am sure we must expect some side effects with it and be glad of the fact that the drug exists, but I am still upset that my doctor won't accept that the brands are different..

it is hard to gather up the mental and physical energy to prove this. I have kept the first Cipla packet he gave me,which was made by Activis, and it clearly states Tetrazine in the colourants (banned in Germany and Austria and not recommended by our Food Agency)

Although it isn't in the latest Accord leaflet there may be other differences in production now that Activis have taken the company's name.  An absolutely lovely lady gave me some Accord when it went into short supply, so I am doing a trial on this old strip of tablets and then the latest ones I am taking to test the difference. There was a list of prices of all the brands of Letrozole on our site, but I forgot to download it so  I would be grateful for anything known about Teva ,  I am in your age group, have never been much trouble to the doctor, and wish he would at least listen. I certainly don't trust drug companies. Have a lot of respect for Novartis which I think brought out the first version of Letrozole called Femera, but am suspicious of some of the overseas companies who have jumped on the bandwagon after the first four years are up when Novartis was entitled to the sole production. Do stay in touch, please. I am sorry you are having the same symptoms, and no,... it isn't old age!

Hi Ladies:  I read with interest anything about Letrozole.  I've been taking it for right at 2 years so far and have definitely found differences between brands.  There's not much point in my going into the various brands that I've had as most of you guys are on things I don't have access too.  So this is what I found personally.  I started on Femara with no side effects at all.  I've been on at least 5 other brands and 2 of them basically crippled me while taking them.  I know the Femara is extremely more expensive than the generics.  My oncologist looked up the pricing and the Femara ran right at $900.00 per month vs the generics which ran around $400.000 to $500.00 per month.  Now I get the cost effectiveness issues and have no problems with generics IF I can tolerate them.  When I found the 2 very bad brands for me I did an ingredient study.  The two I couldn't handle at all had Aluminum Blue Lake coloring in them.  I'm sure not everyone will react as I did to that ingredient, but since we're all so very unique and have varying degrees of sensitivity to different things, I'd suggest you do a comparison and see if maybe there is a common ingredient that's affecting you adversely.  I showed my research to my Oncologist and she called the pharmacy and demanded that they never, ever give me those 2 particular brands again.  

I'm sure you all have noticed that I'm from the States with my pricing.  Our brands are different too.  The one I'm on now is Breckenridge and is made in Tennessee.  It's OK.  I'll be glad to come off all of it in 3 years though.  I hate what my skin and nails are doing.  Mira

Hi Mirabo,

great to hear from you in the States and your post was very interesting. I often look at  Harvard research (particularly on diet)and other sites ,as sometimes their results are ahead of ours,even though we do have some really good research  here

I have just read that there is an action group now which is trying to get the drug companies to reduce their prices for the new but expensive drugs for breast cancer , The Health Authorities here are blamed because they refuse to pay for these drugs on the basis of cost, even though lives are at stake,but the group thinks we should instead blame the drug companies for their enormous profits  and start to put pressure on them.

Good luck with your skin and nails and thanks for getting in touch.

Hi calador. .   

And everyone else who has side effects with anti oestrogen tablets. 

There are fillers in the generic cheaper brands which cause side effects in sims people, there is no doubt about this!

I was originally prescribed Anastrozole by the Oncologist for 5 years then he said that research suggested 10 yrs would be better.  

I had stiffness and other side effects diarrhoea and so forth. 

The local chemist ran out of my usual label and had Arimidex. ( Astra Zeneca) the original brand in stock only. I said that I would try a month’s supply ( NHS prescription). He agreed. The difference was almost immediate I felt so much better on them. I asked my GP for a prescription for the original and she referred me back to the Oncologist who referred me back to the GP and said it was her matter. This went on for three months, I am pretty persistent. The GP eventually said ok and put it on my prescription. 

I would suggest that people find a brand that suits them and get it put on prescription by your GP, if they are unwilling,  see a different  GP or change surgeries if possible.

Be persistent but polite.  show evidence,  send emails etc. Maybe get your breast care nurse on your side cc into emails. ? Or maybe breast care nurse could write/ send email to your GP.  See if the Oncologist would put Femara on the original referral script to GP?  

You should not have to put up with this extra stress in addition to what you are going through. 

The original brand for Letrozole is I believe Femara. The same ingredients as in Femara May be made by another company ( Dreamthief  is a brilliant font of knowledge in this area). 

Good luck Judith xx

Dear calador , I have just been given Tiva for next month I've just checked it and it costs £73. For a month . Femera  £90.  I would ask for ferema but I don't know if it would be much better. I'm not over worried about tartrazine so from Monday I'll see what side effects I get .crescent didn't seem too bad and it was£67 . The accord is now £90 so maybe Cipla will be the same .and they don't aggree with me . 

     It would be good if you could tell me if there is a difference in the two . I found extreme cramp after lunch and straight to toilet .  So I'm not going back to that one. 

       Hope this information helps . I did think it was old age . Thankyou for being so helpful . 

Well said, WhatHappened! ;-) 

Hello Pam.

the reason some are staying on for 10 years is because recent studies found that women who were on Letrazole for 10 years had a better survival rate than the ones on 5 years.

Hello Calador

I'm sorry to hear you have so many issues!  Sorry I cannot help with the brands as I am not in the UK. 

What I can help you with is making some suggestions that helped me.  But first, do change your doctor! He sounds horrible.  What is the point of going to a doctor who does not listen to your problems at least with a bit of compassion.  He should research and try to help.  Go to someone else, you might have to try a few, but find one who is interested in your well-being, not his wallet. (well, the less he helps you, the more you go to him....= more in his wallet).

Since I started Letrozole I had excruciating pain, especially in the morning.  Like you, my hands were so bad I dropped things and could not do normal tasks like even clicking a pen. In the morning I was like tin man in the Wizard of Oz! Knees, back.....It only got better towards the evening.  I felt like a 100 year old. The inflammation side effect of the Letrazole triggered in me Rheumatoid Arthritis.

I have always been interested in nutritional help, so I did some research.  What I found helped a lot on body pain is:

Curcummin at least 1200mg a day.  Make sure you have piperine or black pepper for better absorption.

Quercetin 1200mg day

Bromelain 400mg day

These as well as the usual Selenium, iodine Vit  D which are crucial for cancer prevention.

Pain in the body diminished considerably, but the hands were still a problem. 

Further research  I read about Stinging Nettle 6g a day (6000mg)...which I tried (did not know much about it) and on the fourth day I was able to use my hands painlessly.  I was pleasantly shocked. My specialist was so surprised as well to the changes he saw in my movements, he actually asked me what I took so he could suggest them to his other patients... that was so cool as, when I went there initially, he said he did not know much about vitamins/ did not think they helped.

One new addition. Just earlier I was researching vitamin B12 sublingually and it was researched in the U.S. and found to reduce pain associated with Aromatase Inhibitors (Letrazole is one)

I truly hope this can help you, as you deserve, like all of us, a good quality of life!

Cheers and love.