Steroid Use and Immunotherapy Treatment

To Malph,

Thank you for getting in touch with Macmillan Cancer Support.  My name is Kelly one of the Cancer Information Nurses on our support line. 

Your experience of the inflammation affecting your knee joints and feet does sound very uncomfortable and it’s understandable that you want to get the right balance of controlling these symptoms alongside having maintenance nivolumab.

As we’re not directly involved with your NHS care or have access to all your medical information it’s difficult for us to advise you specifically about what is okay for you to do regarding your steroid doses. It’s important to follow any advice given directly from your melanoma consultant.

There are concerns that taking steroids at higher doses and over long periods of time may potentially interfere with the way immunotherapy drugs such as nivolumab can work. 

This is because steroids can lower or suppress the immune system to reduce the inflammation response to help with the pain while at the same time the nivolumab is trying to stimulate this to treat the cancer.

Weaning down the steroids to a lower dose each month may have been recommended to try and reduce the risk of the drugs fighting against each other.  If you were to continue to take higher doses of steroids up until the day of your treatment you would still have higher levels of steroid suppressing your immune system which could impact the effectiveness of the nivolumab.

I understand from your post on our melanoma forum today you mentioned that your consultant has said that if the amount of steroids is moderate to low this shouldn’t stop you from being able to continue with the maintenance nivolumab each month.

However,  I’m not sure if there has been any further discussion with your consultant or melanoma cancer nurse specialist at the hospital about different ways of trying to control the pain better during the time period when you are advised to reduce the doses. 

For example, pain medication or non-drug methods such as physiotherapy or complementary therapy approaches if appropriate.

Asking for a referral to a specialist chronic pain management team if this service is available within the hospital or community for further advice may help.

Although getting support for symptoms such as pain is always a priority,  we know that this can be difficult to cope with at times.  I hope you don’t mind but I’ve also put some information about different ways to get further emotional support for if needed at this time too.

I hope this information helps.  Please don’t hesitate to get back in touch for more information and support if needed.

 Best wishes,

Kelly

Cancer Information Nurse Specialist

You can also speak with the Macmillan Support Line team of experts.  Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

Ref: KA/DK

Thank you Kelly. That's incredibly helpful.

The Immunotherapy has being working really well but unfortunately there have been side effects such as Colitis, Pneumonitis, Prostatitis and now this Arthritis which will be with me for some time according to my consultant and certainly while I'm on the Nivolumab.

I need to get into some sort of rhythm each month that works for me and doesn't compromise the immunotherapy so will definitely be having discussions about pain management when I'm low / off steroids. My consultant told me to take plenty of paracetamol (he's amazing by the way) but that doesn't help if I'm struggling to get out of the bath, up the stairs etc. I have a number of relaxation apps which crazily I haven't used since having cancer but suspect they might help here. 

Thank you so much for getting back to me so quickly. You people are amazing.