Lenalidomide

Hi, I'm new to the forum. I have Multiple Myeloma, diagnosed in 2019, stem cell transplant in April 2021.

Have been on Lenalidomide maintenance for almost 3 years now. I'm fortunate that it's kept the cancer at bay but have been getting side effects, particularly hip and back pain, bad insomnia and bone pain in my legs at night.

Is there anyone out there who has been having a similar experience. If so it would be great to hear from you :)

  • Hello DSM and welcome to the forum

    I'm sorry to hear about your diagnosis and that you're struggling with some side effects of the treatment that you're currently taking. 

    The side effects that you've mentioned in your post are listed as common side effects of Lenalidomide but it's certainly worth talking to your clinical nurse specialist (if you have one) or your Consultant. It may be that they can help with some suggestions or other medications to help improve these things. 

    If you use the forum search function at the top of the page to look for the terms "multiple myeloma" or "Lenalidomide"  you'll see a few posts where this diagnosis and treatment have been mentioned previously. Hopefully you will find some helpful information. It's also worth looking at the Myeloma UK website where you might connect with others living with this condition. 

    If it would help to talk things through with one of our nurses you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I'm sure they will be happy to offer any advice and support they can. 

    I do hope that you're able to connect with others who understand the challenges of living with this condition. 

    Sending my best wishes, 
    Jenn
    Cancer Chat moderator