Joint Pain and with Exemestane, and Neuropathy

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Hi Lovely People

Im currently on endocrine therapy, Im 43 (44 soon!) and on zolodex and exemestane.

 I have been taking exemestane since the end of May, and I have really bad pain in pretty much all of my joints, particularly bad with knees, and find it difficult to support my weight as my wrists particularly hurt.  I'm also get pain in my knuckles and hands and this can be pretty bad too, and on top of this I have Chemo induced peripheral neuropathy in my hands so at times I have difficulty even typing, or holding a mug!

I have been recommended to try omega 3 fish oils and Glucosamine for joint ache, but no such luck yet.  I am trying to keep active, walks and gentle yoga, but then the pain I get from doing these make it difficult to continue.  I've also been recommended to use paracetamol more often for the joint pain, but I feel like I would be using them everyday.  I'm a bit frustrated also as I'm aware people switch to different medications, but there has been no talk of that (Im guessing I need to make a real go of things first).  

How have other people coped with joint pain or neuropathy?  Do people manage with supplements (and what strength) or painkillers?  Or do I need to just work through the pain?

Any recommendations would be welcome!!

Thanks xxx

  • I am just finishing 5 years of exemestane. I also had some neuropathy but in my feet and my existing osteoarthritis got worse. The big difference I was 70 when I started taking it and you are only in your 40s. 

    I think exemestane is supposed to be the best for joints. I found it marginally better than letrozole. My consultant advised me to try different brands but that demands a lot of help from your prescribing GP and your pharmacist. I also got the last 18 months did water aerobics 5 days a week. This helped a lot. Macmillan got me some acupuncture sessions which helped a little. CBD oil also helped a little.

    Finally as you are probably pre menopausal why are you not on tamoxafen. Even if you are postmenopause you can still have it. 

    Please go back to your oncologist and insist on more help. Always check that any of the supplements you use don't undermine the exemestane . 

    I really wish you the best and hope things improve for you xxx

  • Sorry  tamoxifen

  • Thanks for the reply, the plan is 5yrs exemestane and Zolodex (to put me in menopause) then 5 yrs Tomoxifen.  However, we did talk about that recently and its likely Ill be on exemestane for 10yrs.  Its just all a bit daunting as I was so active before.

    I'm actually having acupuncture for hot flushes, so will ask about having it for joint pain also.  I was considering swimming again, but water aerobics sounds more fun!

    xxx

  • The join pains are horrible aren’t they? I’ve been on Zoladex and exemestane for 18 months (started age 45 so similar to you). I have constant joint pain but the first 6-9 months were the worst. 
    I take glucosamine but don’t think that helps!  What I have found to ease the pain is taking an antihistamine daily (make sure it’s Loratadine eg Claritin as there are different types). I noticed an improvement after a few days.

    i’m still in daily pain and sleep in a wrist brace and feel about 100, but it’s definitely better than it was. 

    Debbie x

  • Try water aerobics. I did this following a referral from physio therapy to hydrotherapy. I did 12 sessions of hydrotherapy NHS and when that ended I found the aqua aerobics. 

    I had to ask for the hydrotherapy. 

    Good luck

  • Sorry I see I have already suggested this!!!! But it is indicative of how highly I rate aqua.

  • Thats great, I'll give it a try!  I was wondering if it's made to ease over time.  I feel like I'm taking a few things, but even pain killers only work to a certain degree!  

    I also have a wrist brace at night!  Its really frustrating, I feel like if I didn't have the joint ache and neuropathy I'd be feeling so much better!

    X

  • Hello lovely ladies,

    I had been diagnosed with breast cancer in February, had chemotherapy, lumpectomy, re-excision as my margins weren’t clear from the first time and now waiting to start radiotherapy. I’m currently on Letrozole and Herceptin. Following chemotherapy with Paclitaxel I developed neuropathy in hands and feet Rageand started to have pain especially in legs Tired face. I’ve been prescribed different medications for neuropathy but didn’t have results.

    I started following the advice given by Professor Robert Thomas, a distinguished oncologist, in his book, Keep healthy after cancer. Among other studies, he mentions the Bedford Real World study which found that over 50% of patients report joint pain as one of the most troublesome symptoms after cancer. Chemo drugs such as Paclitaxel and aromatase inhibitors can cause generalized arthralgia. Hormones which stop sex hormone production such as Zoladex and aromatase inhibitors for breast cancer increase the risk of bone loss. Arthritis after cancer tends to develop within four months of starting hormone therapies. Although pain killers such as paracetamol, non-steroidal anti-inflammatory may be helpful, they have significant long-term cardiovascular and gastrointestinal risks and unwelcome effects. Life style strategies intervention like stretching, yoga and Pilates help to relieve joint pain and improve mobility but have to be carefully balanced.

    As a summary prof Thomas’s advice is to eat plenty of polyphenol-rich foods, a diet of green and cruciferous rich vegetables, reduce meat intake to less than three times a week, eat more oily fish (mackerel, sardines), have green tea, identify food intolerances, use fresh ginger and turmeric as much as possible, reduce calorie intake if overweight, exercise and stretch your joints every day, consider nutritional supplements including a good probiotic supplement.

    As I finished my chemotherapy in June I started to take omega 3 with high levels of EPA a(700mg) and DHA (510mg), a multivitamin and mineral supplement which also contains vitamin D3 which helped a lot.

    I think that water aerobics can be very helpful, haven’t try it until now so it will be the next on my to do list.

    I’m also following the advice of physiotherapist Kelly Sturm (cancer rehab PT) on YouTube for neuropathy and started to have results. Also bought a set of spike balls which help with desensitization.

    www.amazon.co.uk/.../B0CK4RPXHD

    Best wishes Heart