Letrazole

  • 14 replies
  • 284 subscribers
  • 585 views

Hello the forum. I had a DIEP last September in both breasts. The treatment was exceptional. The cancer was fed by oestrogen, so I was prescribed letrazole at the beginning of January. I'm meant to take it for seven years.

It's been three months now and it's hell. I have fibromyalgia and Ehlers-Danlos Syndrome. The side-effects have exacerbated my current conditions and added some more. 

Does anyone have experience of letrozole and its effects? I'm seriously thinking of stopping it.

  • Hi there,

    I’m so sorry to hear about the challenges you’re facing with letrozole. I can definitely relate to how tough the side effects can be. I’ve been taking letrozole for over a year now, and I also struggled with the side effects initially, especially since it seems to amplify existing conditions. I don’t have fibromyalgia or Ehlers-Danlos Syndrome, but I can imagine how much harder this must be for you with those added layers.

    From my experience, the side effects can vary depending on the brand of letrozole. I learned that there are several brands available, and they can sometimes affect people differently due to slight variations in the inactive ingredients. It might be worth discussing this with your oncologist to see if switching to a different brand could help reduce the severity of your side effects. I did this after a few months, and while it didn’t eliminate the issues entirely, it made them more manageable for me.

    I completely understand your thoughts about stopping the medication, it’s a tough decision, and the side effects can feel overwhelming. Before making a final decision, I’d encourage you to have an open conversation with your oncologist about how you’re feeling. They might also have other strategies to help manage the side effects or alternative treatments to consider.

    Wishing you strength as you navigate this, feel free to share an update if you’d like. You’re not alone in this!

  • Hi there, I agree on changing brands. I have been taking letrozole for over a year and use the brand ACCORD which has fewer side effects for me.

    When the pharmacist changed the brand from ACCORD to another I noticed a significant change. The aches & stiffness in the joints got worse. Luckily I am back on the original prescription.

  • Thank you so much for your message. It's very helpful to hear experiences from those who are going through the same. My GP has written to the oncologist with my concerns, but no response yet.

    The joint and muscle pain I have had most of my life have been much worse with the letrazole, with the added bonus of even worse insomnia, itchy and peeling skin, and insatiable thirst (among other complaints). I'm particularly worried about oedema, since I had to have a lymph node clearance from an armpit. It all feels a bit hopeless just now, to be honest, but you have given me at least a little hope that there could be some easing of side effects. I'll have a talk with the oncologist, hopefully soon.

    Thanks again for the reply, and I wish you good health.

  • Thanks very much for the information. I didn't know there are different brands of letrazole. It's definitely worth pursuing. All the best with this rotten illness.

  • Hi there. My aches are worse since going on letrozole but it is tolerable now that i am on the right brand. Itchy skin, I tend to use Shea butter or Aloe Vera gel. Insomnia I find drinking lemon & ginger tea helps to relax me & I read to help tire me before going to bed.

    I was diagnosed denovo Jan 24 with Invasive lobular breast cancer with secondaries to the bones. My cancer is incurable but treatable.  I have been on letrozole, Ribociclib, Adcal tablets along with monthly injections of Zoladex & Denosumab. All this medication has helped me to stay stable. 

    I hope you can find the right brand of medication that works for you.

    All the best to you.

  • After having all the lymph nodes in my right armpit removed, my surgeon recommended that I do specific exercises. I found a helpful and easy routine on YouTube, which I’ve been following daily. It has made a significant difference for my right arm, and I highly recommend sticking with it every day. it’s been really beneficial for me.  I wish you good health and happy everyday.


    www.youtube.com/watch

  • Hi ThatAnne, glad to hear that your surgery went well in September. I too had a diep flap reconstruction on one side in October and now waiting for reduction and uplift of healthy boob. I am on Letrazole for 5 years and find it causes aching joints, especially in my knees. It's worse during the night, but can also feel quite stiff during the day. It must be difficult for you  especially as you already have other conditions to contend with. It may be worth talking to your oncologist, they may be able to prescribe an alternative that would suit you better. Xx

  • Before starting Letrozole I spent a long time researching different brands.
    The brands I came up with are as follows:-

    Femara – original brand
    Accord 

    Glenmark 
    Sun Pharma 
    Cipla
    Manx
    Glenmark

    TEVA
    Dr Reddys
    Amarox

    Wockhardt

    I was able to find a list of ingredients for a number of these brands.

    I used AI (ChatGPT) to compare the various ingredients to the ingredients of Femara- the original brand.
    Nothing matched exactly though.

    I then took the ingredients of the drugs that I was already taking and was tolerating well - (statins made by Glenmark  accord and Teva gave me no side effects)

    I then compare the ingredients of the statins to the best matching Letrozole and was able to come up with 2 Letrozole brands that might suite me the best.
    Touch wood, I seem to be managing ok

    I discovered a medical paper during my research that you might find interesting....

    I'm just so cross that we can't get to chose which brand we want and we're at the mercy of the pharmacists and what happens to be available at the moment.

    Luckily I have 4 weeks worth of tablets in hand so I have time to 'go hunting' if I have to.

    I hope I haven't complicated things for you.
    Sending hugs xx

  • Thanks for the tips. I didn't know about ginger and lemon,  but I like the taste so I'll give it a go. Your medication list is formidable but I'm glad it's keeping you going.

    This is my first time in a forum, and people are so helpful that I wish I'd done it before now. However, I find it difficult to hear about others' experiences with cancer because they all sound so much worse than mine and I just don't know what to say except good luck with it all.

  • You have certainly worked hard on the research. I wasn't aware that pharmacists can change the brand without consulting you. I'm not surprised you're cross after everything you've done to find the best for you. 

    Thank you for the link. I'll look at it tomorrow when less tired (I hope). Good luck with everything.