Forum Discussion

Christabel03's avatar
Christabel03
Member
2 years ago

A vent and question about joint pain

Having been on Tamoxifen, Exemestane and now changed to Letrozole for the past six weeks I'm curious about joint pain or bone pain. Curious or maybe I just need a vent!
I had no pain on Letrozole until a week after I waltzed into my Oncologists office and said how great I was feeling on the new meds after doing not so great on the other two...silly me! Now I am back to hardly being able to get out of my chair if I have sat for too long and generally everything aching. 
Is this just the way life is now? Does anyone take anything (vitamins or other) to help with joint pain or to help with just generally feeling awful? I'm sure the chemo induced menopause is also not helping and I generally feel bloated and fluidy all the time as well. 
I know this is probably a discussion for my medical team but I just wondered what others take or do. 
Trying so hard to remain positive and to be thankful but geez it can be exhausting!

  • Afraser's avatar
    Afraser
    Member
    2 years ago
    I can sympathise with the ‘doing great’ feedback - I did well on chemo and even made a joke of getting tingling in my fingers as ‘finally getting a side effect’! Pride cometh etc. A decade on I still have the side effects of peripheral neuropathy.

    I can’t help with joint pain as, in spite of ten years on Letrozole, I didn’t get any aches and pains as side effects. Bone thinning and vaginal dryness, yes. I take vitamin B and D, fish oil, calcium and magnesium. No idea how much they help, just keep taking them, just in case! Best wishes. 
  • arpie's avatar
    arpie
    Member
    2 years ago
    Sorry you're feeling the side effects of the letrozole already @Christabel03 ... I only lasted 6 weeks on it (it was my first AI) then 6 months on exemestane before the pain level reached the same ..... been on Anastrozole now for 4.5 years and it has been much more manageable.

    Ask your GP/Onc about accessing Medicinal Cannabis Oil .... I find that it takes the edge off pain/discomfort from my side effects ..... it is worth a punt.

    take care & all the best.
  • Ktre's avatar
    Ktre
    Member
    2 years ago
    Been on letrozole for over 1.5yrs now. None ache kicked in maybe 6 months ago. I take two Panadol in the morning and have added magnesium and Vit D to the medicine in the morning. Definitely have a chat with your oncologists, hope you find a solution
  • Cath62's avatar
    Cath62
    Member
    2 years ago
    Hi @christobell, I had joint pain on Letrozole and my GP suggested 4 fish oil and magnesium which have helped enormously. Walking and pilates has also been helpful. My hands were a bit stiff especially in the mornings but a few hand stretches also helped. I hope you find a way forward to help you.
  • cranky_granny's avatar
    cranky_granny
    Member
    2 years ago
    @Christabel03 i can feel your frustration. As above have said. Im on glucosamine magnesium and red krill oil. I know when I’ve missed taking them like when i run out.  It doesn’t start immediately but wow. My Oncologist recommended i take them. Magnesium for the cramps and the other two for the aches and pains. I also take Panadol osteo on script. 4 to 6 a day depending 
  • Christabel03's avatar
    Christabel03
    Member
    2 years ago
    Thanks everyone for your suggestions and messages very much appreciated as always. 

     I am now taking panadol osteo on the worst days and Magnesium every now and then too. It really is frustrating especially when you are trying to exercise and help yourself along the way. If you don't move you get stiff if you do move you get stiff it's almost a no win!! Will certainly be talking more about this with my oncologist at my next appointment. 
  • Rdc2022's avatar
    Rdc2022
    Member
    2 years ago
    @Christabel03, 
    I really relate to what you say about exercise and stiffness; damned if you do exercise, damned if you don’t. I’ve been on Anastrozole for about 14 months and am finding the stiffness and joint pain really limiting. It affects my morale. It seems like a bit of a lottery finding an AI that doesn’t give you challenging side effects. I’ll be talking to my onc about this soon. 
  • Locksley's avatar
    Locksley
    Member
    2 years ago
    I was on letrozeole for 2.5 years. The bone pain in my knees and ankles was a lot.  I couldnt bend down to garden or clean the shower.  Barely take the dog around the block.  I'm 2 months on new drugs and I feel I'm getting a little bit more energy and a little less bone pain.

    Hope you feel better soon.  I'm looking forward to less pain going forward.
  • Rdc2022's avatar
    Rdc2022
    Member
    2 years ago
    @Locksley
    Interested to know what new drugs you’re on? 
  • Locksley's avatar
    Locksley
    Member
    2 years ago
    @Rdc2022 I'm now on exemestane.  I hope the feeling of feeling a bit better lasts awhile.