Immunotherapy and Steroids

Malph 1 month ago

3 replies
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Hi all

I had a primary in my left thigh which spread to my lungs. Mettastatic Melanoma. I have been receiving immunotherapy. I managed three courses of IPI/Nivo before I got ill with colitis and then pneumonitis. Steroids have been given to me and have been effective although it took a while and couple of hospital stays. The decision was taken not to give me a fourth cycle of IPI/Nivo which is understandable and after a while I was started on a 'maintenance' course of Nivolumab only. I've now got inflammation in some of my joints and again am managing that with steroids. My consultant said that if the amount of steroids is moderate / low it shouldn't stop me being able to continue with the maintenance immunotherapy.

My question is that they want me to ween down each month which means that the pain in my joints increases - a lot! Once I've had treatment I go back up on the steroids and it's managable. I think I understand why I need to be on a low dose when I have treatment so they're not fighting each other (one suppressing my immune system and the other turbo charging it) but has anyone kept a fairly constant amount of steroid intake and just skipped a day when it's treatment time?

latchbrook 1 month ago

Hi Malph and a very warm welcome to the group which I hope you'll find is both an informative and supportive place to be.

I don't have the experience you're looking for but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Dots 1 month ago

Hi Malph,

Well done on lasting THREE rounds of Ipi/Nivo! I lasted two. It's fantastic stuff. I had lots of colitis and hence lots of steroids after my Ipi/Nivo. I was told I needed to get the Pred steroids down to 10mg before they could give me the maintenance Nivo. I think the Pres steroids interact with the immunotherapy's continuing action so it's not possible to just skip treatment day. I'm not a doctor but I was definitely not given the 'day off' option. I'm sorry to hear you're suffering. Hopefully, when the weening off is over, the joint pain may improve. I found weening off steroids very difficult physically (muscle weakness, delibitating fatigue). I did recover quite a bit once I'd stopped.

Best,

Dots

Malph 1 month ago in reply to Dots

Hi Dots

Thanks so much for your response which is helpful.

In a way I'm happy that that my struggles are with my knees, calves and feet and for a long time now have stayed away from my organs. I'm going to have a serious chat with my oncologist and GP about where we go from here because on 10mg I wouldn't be able to get out of bed, the bath etc. Stronger pain relief might be helpful as I ween down (40mg at the moment and ok as the day goes on) but there is no longer term hope of improvement until I stop the maintenance treatment which is what my consultant has told me. Immunotherapy has been brilliant for the cancer. There is very little of it left. It might be a question of continuing with maintenance or quality of life. I've had the problem with my joints since May so I know that whatever happens it won't be a quick fix which is fine.

Regards and best wishes

Malph

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