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Letrozole

Chris-Sylvia
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I have just had a mastectomy with reconstruction. Luckily my lymph nodes were all clear and the cancer was grade 2

i have now been given Letrozole to take for 5 years and am concerned having read the numerous possible side effects. I appreciate that these effects can vary according to each individual but would welcome comments from anyone who is currently taking this drug. Although I am 75, I am generally fit and healthy, going to the gym 4/5 times a week, not overweight and a non smoker. Many thanks

Christine

  • Hello Chris-Sylvia

    I am taking Letrozole having started it on 12th June last year. Initially I suffered indigestion and stomach pain but that has gradually eased off but the first 3 months were a challenge. I have persisted because I know that this drug is beneficial for my type of cancer ( HR positive and HER2 negative). Although I do get occasional acid reflux I find a couple of Rennie tablets tend to calm it down. I also follow my breast nurse's advice to take the Letrozole tablet immediately before going to bed. I have not suffered too much with hot flushes but the possible reason for that is that I am 81 and the first menopause is a distant memory! The joint pain is difficult to assess because I suffer from fibromyalgia and although it has worsened it is not crippling.

    I have to continue with this medication for seven years because I am at risk of a recurrence having had all my axillary lymph nodes cleared (four cancerous and evidence of extracapsular spread), and a 35mm tumour removed from my breast with evidence of lymphatic vascular invasion. Hence I feel quite lucky that I am still here and able to look to the future despite my age!

    As you are fit and healthy I am sure you will be able to cope with any side effects. If they should become too troublesome, there is always the option of changing to another tablet but do give Letrozole a try.

    Unfortunately, I am one of the unlucky 20% to suffer lymphoedema (in the breast) due to the axillary clearance and 20 sessions of radiotherapy so my mind is somewhat occupied with this development. Life after cancer is never straight forward,is it?

    Wishing you all the best

    Anne  

  • Offline in reply to afd

    Dear Anne

    Thank you for your reply, which I found both helpful and honest. 
    It seems you had a lot more to contend with than I have and I am inspired by your positive attitude. I will embark on my journey with Letrozole bearing in mind all that you have said. I would be interested to know why your breast care nurse suggested taking the medication before going to bed.

    kind regards 

    Christine 

  • in reply to Chris-Sylvia

    Dear Christine

    Thank you for replying.

    My breast nurse suggested that I change from a lunch time date with Letrozole to a night time regime because she thought the tablet would have a lesser effect on my digestive system. I had assumed that taking Letrozole with plenty of food would reduce my indigestion. I was wrong and although I have occasional bouts they are not constant and can be managed. Originally I was given a prescription for Omeprazole but this did not agree with me so I discontinued it. I also decided not to take Adcal-D3 because it added to my stomach discomfort and gave me constipation. Instead I asked my GP for a calcium and D3 bloodtest and both showed normal levels. I am making sure that I have adequate calcium and D3 in my diet because I am aware that Letrozole can cause the bones to thin. The proof of the pudding will be when I have my next Dexa scan scheduled for 2026!! My initial scan showed osteoporosis in the left hip and osteopenia in the spine but as the scores were reasonably low (in my opinion) I have declined treatment with alendronic acid because I do not want to take any risk with my teeth. The oncologist knows of my decisions and seems content with them provided that I continue with Letrozole.

    Trying to find a balance with drugs is difficult, isn't it? Knowing that Letrozole can cause a rise in blood pressure and cholesterol is a bit depressing but I am trying my best to concentrate on having a good diet and plenty of daily exercise. The latter is difficult for me because fibromyalgia has caused me to be unbalanced and I have to walk with a stick but I manage to get out most days for one hour of plodding!

    Wishing you the best of luck with your medication!

    Best wishes

    Anne

    ! 

  • Offline

    Hi Chris-Sylvia  I had a mastectomy and reconstruction in October, having completed 7 cycles of chemotherapy. I am now on letrazole for 5 years and have also had 15 sessions of radiotherapy. At the moment, I seem to feel constantly exhausted, even after just getting up in the morning. Not sure if it's the after effects of radiotherapy or the letrozole that is causing it. I had much more energy when going through chemo and was walking 2 1/2 miles everyday. Would like to hear how you find the letrazole  xx

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