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

Hi girls. I have been taking Letrozole for almost 2 years now. I have developed a love/hate with this drug. I love how it keeps me safe, but hate the sore joints it gives me. 

I have tamed the side effects with cod liver oil and glucosamine.

I recently bought my usual cod liver oil supplements from Holland and Barrett. I trust their quality. This time their best offer was cod liver oil with calcium. I thought I would give it a try..........IT IS MIRACULOUS!! The pain in my joints has stopped altogether!!

They should prescribe on the NHS!!

Hope this helps all you sufferers of side effects.

Love J xx

  • This happened to me, except the other way round, I couldn't tolerate Accord.  My pharmacy has a note to say only the Cipla, but the last 4 months they haven't had it, so I have to phone round the different pharmacies in the area trying to find it. 

  • Hello all, I have been prescribed letrozole and am on 5th week. Along with this my consultant said I would need Adcal + D3, calcium and vit d3, to help against bone strength. Do feel very achey, more so than before this treatment. Also difficulties sleeping, again more so than before treatment. Welcome any advise regarding the sleep issues, the flushes seem to wake me every 2 hours too!!

    Feel like I have aged years in the last 3 months!! X

  • Hi there sorry to hear about your sleep issues with Letrozole. I’ve been on Letrozole almost 10 years now so possibly coming to the end of my treatment. I have to say I have not suffered with sleep issues so it may be that it’s a temporary thing and not connected to the medication. The hot flushes have got better over the years.  Or maybe try changing the time of day you take the drug if that’s allowed? The achy bones on the other hand is something I’ve learned to live with and you might find ( like lots of people) that the aches and pains are sometimes better or worse with different brands of Letrozole which you will discover along the journey. Make sure you take your Adcal  to protect yourself bones. I hope things improve for you good luck x

  • Hi, I was on letrozole at first but couldn't tolerate it as it gave me bad migraine like headaches. I was changed to anastrozole which I've been on for just over 3 years. I have bad pains in my feet and ankles but better than the headaches. The worst is the effect it has on the downstairs department, no hormones has made me suffer from vulval atrophy, so itchy and painful, nothing eases it. Does anyone else have this problem, I'm 54 and sometimes feel 74. 

  • Hi

    I have suffered over the years with my hands, wrists and ankles but continued with the tablets as I wanted to give myself the best possible chance. 

  • Hi,

    Have you ever had your vulva examined? 

    I have never taken anastrozole but I did get an itchy and sore vulva after treatment for breast cancer. This turned out to be vulva cancer - unconnected to breast cancer or its treatment. It is unlikely to be cancer. Vulva cancer is extremely rare but worth getting it checked out.

    All the best. 

  • Hi Christinediane

    So pleased to hear you are going for reconstruction. I am 69 and diagnosed last Tuesday. I will need a mastectomy but they aren't doing reconstruction at the moment due to covid. Please let me know how it goes.

    good luck xx

  • hello Biewerlady

    thanks for contacting me.    In fact, I had my reconstruction back in December 2019 after quite a long wait on waiting list.

    I had mastectomy in 2014 ,  but was advised not to have an immediate reconstruction because I had to have  radio therapy, chemo, Herceptin jab.   and, at the time, I decided not to have a reconstruction anyway.

    However, after careful thought, decided to go for it.    to cut a long story short, saw breast consultant and he said a Flap Diepe procedure would suit me best  (taken from my stomache) .   In Dec 2019 had the procedure and it is a long one,  7/8 hours under the knife.  I have to say, there is absolutely no guarantee that the reconstruction will make your breast look like the original one which is left (I had one boob removed)   and, I will have to go back and have it "tweeked" by having Lipo suction - taken from inside of my leg.    The only way I can describe my thoughts on it is,   the reconstructed one looks more "round", whereas my original breast looks more like a "Lemon ",   but hopefully they can improve it by lipo suction.    However, as you say, with this covid, who knows when I will get  this procedure done,  as there will be more deserving cases, like yourself, who will come first on the list, and rightly so.

    hope I have't "confused" you, but it is a big step and they do warn you not to expect it to look like the original boob.

    Let me know how it all goes.

    regards  pam

    sorry for long explanation.  if you want any more help/advice , please recontact me.