Hello Macmillian Cancer Support. I have just finished a year of immunotherapy being Nivolumab with minimal side affects of Hypothyroidism, Fatigue that I have coped with. But a few weeks ago I woke up with excruciating leg pains that affected my mobility, which is very frustrating as I have been attending aqua exercises to help with my recovery from lymph node surgery and I go on walks when I can. So I contacted the cancer centre for advice who prescribed me some steroids, which I was reluctant to take as I would like to know the underlying cause as to why I just wake up one day and can’t walk so well without pain and support. So I went to my doctors and he referred me to the MSK clinic for physiotherapy , his actual words were we expect to start seeing ladies of your age! Meaning arthritis! I attended the MSK clinic and am seeing a lovely physiotherapist, but how can she help if she doesn’t know the underlying problem! She suggested I go back to my doctor for blood tests and X-rays , because I would like to be investigated really as to why this has happened! My blood tests came back with minor abnormalities, that the doctor will discuss at the next available phone appointment, on the 1st July! She messaged me yesterday to say that her request for the X-rays have been rejected! I expressed that this is unacceptable and lack of care! She said they were rejected because it would be quicker to be referred to oncology or MSK clinic! Which I already have!!! This is so frustrating! I am now trying to contact the cancer centre, in the meantime, I still suffer constantly with leg pain and mobility issues, although the pain has eased since it first started. I take turmeric and ginger shots, vitamin D and Magnesium to see if this helps. But my question is Has anyone else experienced leg pains after Immunotherapy- Nivolumab? Take care everyone from Tracy
Hi Tracy/SquinkyYour leg pains sound very unpleasant and I can understand your frustration at not being able to get it sorted straight away.
I haven't had the treatment you've had but there are lots of people in the group who have. Hopefully by replying to you and, therefore, bumping your post back to the top of the discussion list, someone with a similar experience will pop on.
Let us know how you get on with your GP next week.
Anne
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Squinky
I am sorry you are having leg pains after immunotherapy. I have a different cancer but was treated with pembrolizumab, which is a drug in the same class as nivolumab with the same mechanism of action (both are PD-1 inhibitors). These drugs remain active for a considerable time after treatment, so you can have effects for up to 2 years after stopping treatment. One common issue is inflammation, which would explain why your oncology team recommended steroids. It’s possible the inflammation is pressing on the nerves concerned - I had this with one of my arms following an immunotherapy adverse event that caused a whole load of other problems. I don’t think anyone likes taking steroids, but if your issue is immunotherapy related inflammation, steroids are the only thing that will resolve it.
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