Exemestane side effects

I'd appreciate hearing from anyone who has been on Exemestane after Tamoxifen. I've been taking Tamoxifen for more than two years, and experienced a few side effects. To begin with I had severe headaches but these wore off after I'd taken the drug for a while. I had hot flushes throughout the two years, and a few other minor problems.

I've now been switched to Exemestane which I've been taking for a month and a half, and I am again getting bad headaches. The most severe side effect that has been worsening dramatically since I started taking the drug is arthritic pain in all my joints, especially my fingers and wrists, but also elbows, shoulders, hips etc. I am also getting other side effects such as nausea, dizziness, indigestion, constipation and a few more. I feel hot and feverish all the time rather than having hot flushes.

My oncologist suggests I take the tablets for another three or four weeks to see if things improve and if not, go back on Tamoxifen.

I am just wondering what other people have experienced? Are the side effects likely to wear off if I continue on Exemestane? If I stop taking it, will my joints go back to normal or will they be permanently affected?

Obviously I don't want the cancer to return, but neither do I want to continue with a treatment that is making me feel ill all the time if it's not absolutely necessary.

I'd love to hear other people's experiences. Thank you.

Parents
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    Hi WelshSquirrel, Justanne, Lovemydog and Moonpuddle,

    I thought that you might all find it helpful to hear of the longer term outcome with these drugs. I have had 2 bouts of breast cancer in the past 11 years. Intially, I had a lumpectomy followed by Tamoxifen. I found a second lump a year later and had a double mastectomy, followed by Letrozole for 6 years.

    I had terrible night sweats with Tamoxifen as well as weight gain and insomnia but worst of all were my emotions. I was constantly crying, which was totally out of character for me.

    When I changed to Letrozole my emotional state improved but my arthritis gave me a lot of trouble, to the extent that I had to have both knees replaced. I stopped taking this in July 2017, but still have trouble with all of my joints. I also had eyesight complications which has resulted in 5 eye operations and I am currently waiting for another 2. I developed lymphoedema in both arms and now wear elasticated sleeves on both arms all the time. I attend a lymphoedema clinic twice a week for two weeks every 12 weeks. Here I get manual lymphatic drainage and am physically bandaged from shoulder to fingertip in layers of compression bandage and,I come out looking like the Michelin Man (especially with all the weight I've gained). These are just some of my legacies from Letrozole, but I would certainly take it again, as I am still here and leading a full life 11 years on.

    All cancer treatments have side-effects, but we have to weigh up the gain. There are times when I felt like giving up, but I'm glad now that I perservered.

    There are things that can be done to help combat the side-effects. For night sweats, I was prescribed Clonidine, which didn't work for me. I was then prescribed Venlafaxine, a mild anti-depressant and, this did greatly reduce the sweating. Using a particular make of a drug can help too. Discuss this with your breast care nurses.

    There is no way of telling whether or not people will suffer side-effects. Some people sail through with none, whilst others have a really hard time. It is very much an individual thing and, if treatment is really unbearable, talk to your breast care nurses, as they can alway suggest 'way rounds' to these challenges.

    I do hope that you all manage to see your treatments through and remain with us for a very long time still.

    Kind regards,

    Jolamine xx

     

Reply
  •  

    Hi WelshSquirrel, Justanne, Lovemydog and Moonpuddle,

    I thought that you might all find it helpful to hear of the longer term outcome with these drugs. I have had 2 bouts of breast cancer in the past 11 years. Intially, I had a lumpectomy followed by Tamoxifen. I found a second lump a year later and had a double mastectomy, followed by Letrozole for 6 years.

    I had terrible night sweats with Tamoxifen as well as weight gain and insomnia but worst of all were my emotions. I was constantly crying, which was totally out of character for me.

    When I changed to Letrozole my emotional state improved but my arthritis gave me a lot of trouble, to the extent that I had to have both knees replaced. I stopped taking this in July 2017, but still have trouble with all of my joints. I also had eyesight complications which has resulted in 5 eye operations and I am currently waiting for another 2. I developed lymphoedema in both arms and now wear elasticated sleeves on both arms all the time. I attend a lymphoedema clinic twice a week for two weeks every 12 weeks. Here I get manual lymphatic drainage and am physically bandaged from shoulder to fingertip in layers of compression bandage and,I come out looking like the Michelin Man (especially with all the weight I've gained). These are just some of my legacies from Letrozole, but I would certainly take it again, as I am still here and leading a full life 11 years on.

    All cancer treatments have side-effects, but we have to weigh up the gain. There are times when I felt like giving up, but I'm glad now that I perservered.

    There are things that can be done to help combat the side-effects. For night sweats, I was prescribed Clonidine, which didn't work for me. I was then prescribed Venlafaxine, a mild anti-depressant and, this did greatly reduce the sweating. Using a particular make of a drug can help too. Discuss this with your breast care nurses.

    There is no way of telling whether or not people will suffer side-effects. Some people sail through with none, whilst others have a really hard time. It is very much an individual thing and, if treatment is really unbearable, talk to your breast care nurses, as they can alway suggest 'way rounds' to these challenges.

    I do hope that you all manage to see your treatments through and remain with us for a very long time still.

    Kind regards,

    Jolamine xx

     

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