Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

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

calador
Posted by

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.

jmp
Posted by

Hi . .   

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

pansy2468
Posted by

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 . 

Eagle Soaring
Posted by

Well said, WhatHappened! ;-) 

Eagle Soaring
Posted by

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.

Eagle Soaring
Posted by

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.

Eagle Soaring
Posted by

For anyone interested in the details, I found an article on "Oral vitamin B12 to improve aromatase inhibitors (AI)-associated musculoskeletal symptoms (AIMSS)." It is about sub-lingual B12 decreasing pain.

I have been taking for a few days and found it definitely improving energy levels as well.

"Conclusions: This study suggests that vitamin B12 reduces pain and improves quality of life for patients taking AIs who experienced AI-related musculoskeletal symptoms. If confirmed in large randomized prospective trials, Vitamin B12 would be a safe and cost effective option for the treatment of AI -related musculoskeletal symptoms."

The research is from "Journal of Clinical Oncology"   https://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e21679

Cheers and love

pansy2468
Posted by

I am writing to say ,I was given two weeks Glenmark and I think they are fine. I cannot find them on bnf so maybe old . Doctor has given me Teva for a month it's£76 . So I start tomorrow . Will let you know . Keep well. 

AnnJac
Posted by

Just picked my 4th presciptjon and 4th different brand.  Has Crescent, Teva, Glenmark and just picked up Manx.  Haven't noticed any difference to be honest.   Hard to know if fatigue is still effects of operation and trying to heal.  Bought some B12 vitamins after reading an earlier post.  

Anne xx

AnnJac
Posted by

Just picked up 4th prescription and 4th different brand!  I've had Crescent, Teva, Glenmark and just picked up Manx.  Haven't noticed any difference to be honest.  Not sure if fatigue is down to tablets or still effects from op and healing issues.   Just bought B12 vitamins after reading one of earlier posts.  Interestingly they were on the shelf marked fatigue - so hoping they may help.  Worth a try.

Anne xx

moomy
Posted by

Hi AnnJac,

i asked for B12 in Boots today, they only had capsules so as it was a tiny branch shop I thought I’d wait till I got to a bigger shop....

hugs xxx

Moomy

AnnJac
Posted by

I went for the capsules Moomy.  The article didn't seem to distinguish?  Had to get some other B vitamins with them.  But got a high strength one which had 500Mu of B12.  The ordinary ones only had about 10Mu I think.  Tesco.  3 for the price of two so got 90 days supply.  Can't do any harm.  Whether there is a better one I don't know.  I was in Tesco picking up prescription anyway.  Be interested  to hear what you can get from Boots.

Anne xx

moomy
Posted by

Hi AnnJac,

the article actually quoted sub-lingual I thought (liquid, drops under the tongue) which is what I’m going to try to get....

hugs xxx

Moomy

AnnJac
Posted by

I read it again and it did!  But the tablets may help.  Do let me know if you can get sub-lingual from boots.  If you can I'll pick some up next time I'm at big Boots - in the mean time I'll take these as it may help .....

Anne xx

moomy
Posted by

Will do, AnnJac!

we are planning a bus ride to Poole tomorrow, where there is a decent sized Boots if I remember rightly. Will try there, as my ankle and foot pain has got a bit annoying recently! 

Hugs xxx

Moomy