Aromastase Inhibitors

I have been on the above mentioned drug, Letrozole to be precise, for two and a half years. If you have read my profile you will have seen how angry and upset I am over the life changing and painful side effects this wonder drug has caused me. I know I am not alone. Millions of women, worldwide, are experiencing joint pain, genitourinary discomfort , palpitations, bone thinning and more. There is little help for these conditions other than taking even more drugs, which in turn, cause further unwanted side effects. So we find ourselves in a vicious cycle of polypharmacy, suddenly having a cabinet full of drugs we otherwise would not have to take.

 Letrozole was approved in 1993, that's almost thirty years ago, and during that time, to my knowledge, no alternative treatment has been produced or advances made in the suppression of breast cancer recurrence. I would like to know why oncologists believe it is acceptable to continue to prescribe a drug that causes such misery and pain that many women voluntarily discontinue use of an Aromastase Inhibitor before the five year recommended period, thus placing themselves at risk of a breast cancer recurrence . 
The recommendation now, is to continue on an AI for ten or even fifteen years. I find this advice so blinkered. Patients are suffering, no new, better, more gentle drug has been produced and we are being asked to spend, in many cases, the rest of our lives on this aggressively, cruel remedy. I urge oncologists to stop looking at the statistics and consider for a moment that real people are taking a drug which is causing distress, pain, broken lives and added pathology which otherwise would not exist. A bitter pill to swallow indeed. 
 

  • Thanks very much.  Yes, I do think that I haven't seen the right person - it's just luck who you are referred to. I won't give up or I'll never have a proper, happy life.  I'm so glad to hear that you got sorted out. Ill health does really get you down. I just want to be back to how I used to be! Anyway, I will definitely push - thank you for encouraging me. x

  • I am not sure whether this will be helpful to you or not.  I have been told by several GPs that I can use estriol cream with Letrazole but my consultant has said that they (the hospital) do not recommend using estriol cream with Letrazole. However,  when things get very difficult they suggest switching to Tamoxifen for a while and using the estriol cream to alleviate symptoms before switching back to Letrazole and no estriol.  I am not clear as to why this is acceptable but maybe it is something you could discuss with your consultant?

    I have been taking Letrazole for 6 months and I am very tired but I do find that a walk every day helps and I am gradually increasing how far I can go - not yet as far as pre Letrazole but hoping for imrovement. 

    Also I have found Hyalu Femme quite helpful with vaginal symptoms.

  • Thanks for your reply. Since my last post, I have now been given vaginal oestrogen cream "ovestin". My oncologist said that I can use it as it is a very low dose and does not enter the bloodstream. I have only been using it for just under 2 weeks, so no improvement atm, but I'm hoping that it will help me. Thank you. 

     

  • It was so uplifting to find this thread as I had thought I was the only one who had doubts about taking Letrozole. After being diagnosed with breast cancer in February 2021 I was advised to have lumpectomy, chemo, radiotherapy and at least 5 years of Letrozole. I have never willingly taken conventional medicine, preferring natural, herbal, plant based remedies and treatments such as Reiki, Kinesiology, meditation etc. At the age of 68 and with no previous medical conditions the thought of the recommended treatment horrified me. I did hundreds of hours of research into the treatments that were being recommended and consulted a naturopath who prepared a 20 page report of natural ways that I could potentially achieve the same level of estrogen reduction by making lifestyle and diet changes. So, I went ahead with the surgery and just 5 days of radiotherapy but politely declined further treatment. My view was that I wanted to stay 'me' and if that meant I had a shorter lifespan, it would be preferable to a longer life feeling weak and ill. The lifestyle isn't easy to follow but I do feel totally in control and I'm sure it is working as I do indeed have some of the symptoms associated with low estrogen levels and take natural, organic supplements to counteract these symptoms. A happy side effect is that I have lost over 2 stones in weight and have increased energy levels. I don't know if my choice was the right one but I do know that popping Letrozole and all the other drugs to counteract its side effects was not for me. I stand by my decision and have no regrets. I believe that everyone is different and that each of us has to do what we feel is right. It is sad though, as some here have said, that there seems to be just one protocol for all women and that the drugs really have not improved greatly, especially when considering the huge amount of funds raised for research. It's also so difficult to talk to the medical profession whose only mission appears to be handing out prescription drugs. I had so many arguments with oncology consultants over my decision, one actually said "for God's sake woman, just take the chemo, it's not that bad". Hmmmm. In his opinion, of course. 

  • I find this interesting as I am considering going along the same lines.

    I've been shellshocked since the start of Sept when I had an IDC estrogen positive cancer diagnosed (picked up on my 4 yearly mammogram) & was operated on last Friday...wide excision + sentinel node biopsy.

    I got my results yesterday...5mm lesion removed & lymph nodes clear...just the best result I could hope for.

    Radiotherapy is to be discussed as a matter of course but I've been given the percentages and I feel I don't need to take this up & my oncologist agrees...but I will go to the consultation & base my final decision on what is said.

    Now to Letrozole...I'm 68 & have been offered this. From what I've researched it horrifies me. I already have mild osteoarthritis in both hips & a recent pelvic x-ray showed a bit of osteopenia.

    I will be given a Dexa scan but I feel I've already made up my mind on this one

    I also have b12 deficiency & trying to keep myself on an even keel with that takes up most of my time. I get very fatigued if I push things & stress brings me down big time.

    Just a month prior to my diagnosis I started HRT (patches) for VA & also to hopefully benefit from everything else HRT gives you. I was previously on vagifem & estriol cream but they weren't doing much. Obviously the HRT is now stopped. As far as I know I should be able to go back to estriol & vagifem but again I will be seeing another consultant to discuss this...but I feel Letrozole will only aggravate genito/urinary problems.

    I have a very low tolerance to drugs...my system just doesn't seem to cope with pharmaceuticals....with the result I have followed the holistic route for years & this is the route I am hoping to follow now.

    I have a brilliant medical herbalist who has looked after me well off & on over the year's & she's also great on nutrition so she's going to put some recommendations together for me & I will weigh it all up.

    Right now I'm exhausted....but mightily relieved.

    I hope you maintain good health...I wish you all the very best

  • I was put on anastrozole initially but was changed to letrazole as it caused excessive facial hair.  I am experiencing severe pain and stiffness in my neck, shoulder, and back and eye irritation and pain in vaginally tissue. Stiffness and pain are worse on morning waking. All these are known side effects of letrazole.  Oncologist has suggested changing the time of taking pill to morning from evening.  If no change she will refer for body scan to check if cancer spreading but they think symptoms due to letrazole.  I agree with others that the side effects are severely affecting quality of life. I was unable to join family today on bitlrthday outing as feel so awful.

  • So sorry to hear you have missed a birthday outing & that you are suffering such discomfort

    The more I read about people's experiences on Letrozole the less inclined I am to take it.

    I need to weigh everything up, I'm 68 I don't want anymore pain than I already have with my arthritis. If I can't manage to get out for a walk every day to maintain my reasonably good fitness level, if I couldn't garden which is an absolute must for my mental well-being I would be distraught.

    Quality or quantity is the question for me.

    I'm sending best wishes for a good result from your scan.

    In support...Aileana x

  • Thank you for responding. Walking helps to reduce the pain. Gardening is therapeutic but bending is difficult. Keeping up exercising is important. Sitting for long periods and lying down make the pain and stiffness worse. But everyone reacts differently to medication. Some people tolerate letrazole and anastrozole without problems. So it up to each individual to decide. You may be fine with them. My Macmillan nurse and oncologist have been very helpful.