Letrozole

Hi I’m new to this forum.  I have had breast cancer twice, 2nd time round was in the same breast.  Because of this I decided to go for a double mastectomy to avoid a “3rd” time.  First time round I was put into Tamoxifen for 5 years, apart from the common side effect of hot flushes & mega weight gain  I felt well on then.  However, I’m now on Letrozole, have been taking them for just over 12 months and am experiencing just about every single side effect listed and more.  Recently I have been getting excessive sweating, dull like growing pain in my left leg from hip to  knee, excessive fatigue and more recently bouts of Vertigo & Tinnitus which are so debilitating I keep having to take time off work.  I’m interested to find out  if anyone else is experiencing this on Letrozole?  I also have aching joints which I can cope with, excessive itchiness all over the body, mainly at nigh but I take antihistamines for that.

With all of this going on it’s making me feel like a complete hypercondriact... is anyone else experiencing all of this and how do you cope? 

I look forwards to your comments xx

  • I imagine that it is not the statins. I've been on Letrozole for over a year and in the past six months have seen a significant deterioration in my mobility and an tremendous increase in pain in all joints and bones. I take turmeric and black pepper which helps a bit as Nd do exercises and Pilates that seems to give relief for a few hours. Even if you just get a Pilates book to work from, it's worth a try

  • How did you get your Mets diagnosed? What were your symptoms ? Did you have x-rays or bone scan.? I'm not convinced that my pain is just a reactive arthritis but doctors not keen to do a scan, I guess it's expensive. But I've been on Letrozole for about 16 months now so hard to tell what the cause is but it's hard to cope with every day. Hope you keep your mets under control. Best wishes. Sue

  • I know what you mean. I thought I had spread to my bones. My GP gave me a form to self refer to a physio which I did. It was a bit of a wait but worth it. He did all kinds of manipulations and diagnosed arthritis in only 1 knee. He said if I'd had it elsewhere I would've been screaming & I wasn't. He said all the other aches & pains were medication related. I've been so much better on Tamoxifen but took about 4 months to see a difference.

  •  

    Hi Sueshi,

    I had a year on Tamoxifen with my first bout of cancer and Letrozole for 6 years for my second. It is hard to say how much of my joint pain is due to natural causes and how much to Letrozole, but it certainly increased considerably once I started to take these medicines. Every joint in my body is sore, but my knees were so bad throughout treatment with Letrozole that I had to get both knees replaced.

    Nearly all hormone treatments seem to carry side-effects, but some cause individuals more discomfort than others. I guess that these are the price we pay for keeping our cancers at bay. I stopped taking these in July 2017, but unfortunately the joint pains are still with me.

    I hope that your treatment gets easier with the passage of time.

    Kind regards,

    Jolamine xx

     

  •  

    HI Claire,

    I'm glad to hear that you found physio helpful. I was referred to a physio too, but the NHS only covered the first 4 visits. Initially the physio seemed sure that he could help, but eventually he told me that there would be no improvement. He gave me exercises to do with my back shoulders and legs. I still do these, but have had no great help with them. I now use a mobility scooter to get around, as I refuse to be beaten by cancer.

    I am glad to hear that you are finding Tamoxifen better. It does take some time for it to kick in, but it's well worth the change if you are benefitting from it.

    Kind regards,

    Jolamine xx

  • I only had 1 physio appt which was to diagnose the symptoms. Which it did - the medication.

  •  

    Hi Claire,

    It sounds as if this could be an easy get out for your physio. Did he carry out any further tests to confirm this?

    Kind regards,

    Jolamine xx

  • Hi there Close

    Sorry Ive only just seen your post. But I too have had every reaction but also the vertigo etc. I was referred to an ENT clinic (ear, nose & throat) and a wonderful consultant prescribed Betahistine Dihydrochloride which is really effective with very few side effects. I think it also reduces the excessive itchiness. The dull achy growing pains seem worse at night but doing Pilates and using an exercise bike seems to reduce the pain and the stiffness. My physio also advised Omega 3 oils , don't know if they are helping but should do the n the long term by reducing the arthritic joint damage. Hope you are getting along better now. 

    Sue

  • Thanks that's reassuring. I'll ask to go back to a physio as the one I saw just gave me an exercise sheet without checking my mobility at all.

    Hope you're feeling and coping better.

    Sue