Fatigue post immunotherapy treatment for melanoma

FormerMember
FormerMember
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Hello,

I was wondering if anyone had any experiences of fatigue a long time after immunotherapy treatment had finished?  A lot has been written and discussed about the longer term impacts of cancer treatments such as chemotherapy and radiotherapy and how these can have an impact in terms of tiredness/fatigue for a long time after treatment but there doesn't seem to be much on immunotherapy (I guess due to it being relatively new). 

By way of background I was originally diagnosed with Stage 3 melanoma in 2015 and this spread to one of my salivary glands the next year - both of these were treated with surgery but then at the end of 2017 it was confirmed to have spread further and I needed to undergo immunotherapy treatment (a combination of nivolumab and ipilimumab - had to google those to get the names right!).  It was only after a couple of months that I had to stop due to side effects and then I was on a combination of steroids, immune system suppressants and antibiotics.  I felt fine once the steroids kicked in and even for a while after finishing all courses of drugs but probably since August last year I have been struggling a bit with fatigue.

I can usually get through days and weeks at work but I generally do feel pretty drained and a bit sick from over tiredness a lot of the time and it doesn't necessarily go away even if I have a few days rest.  It does vary - some days or weeks I can be pretty much fine but most of the time I do struggle and I was interested to know if anyone had any similar impacts from going through immunotherapy?  The consultants seem to suggest it isn't necessarily normal to get fatigue long term after the treatment so I would welcome anyone's thoughts on the matter.

I should add my most recent scans have shown no obvious signs of the melanoma so I am doing well (fingers crossed, touch wood etc.) in that sense - its just that I can't seem to get back to 'normal'.

  • Hi and welcome to the online community

    I'm glad to hear that you have no obvious signs of melanoma after being treated with immunotherapy.

    I can't help with your question about fatigue but I thought it might be an idea for you to join the melanoma group and post your question there as well. It would also be great for those currently or just about to embark on immunotherapy to read about a success story like yours.

    If you'd like to join clicking on the link I've created will take you there.

    I hope to see you over there later.

    x

    Community Champion Badge

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

  • It may just be the fatigue is due to you living with cancer, ie like any chronic disease it takes its toll on your energy levels. Maybe you need to pace yourself, - on a regular basis eg if you have a particularly heavy day, take it easier the next  Can you do that  with your work?

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to buttercup01

    Thank you for your reply and I think you are probably absolutely right.  I just get a bit confused because when I discuss it with consultants they always seem surprised that I should be feeling this way and it seems like its unusual.  In terms of work it is difficult and I am thinking of changing roles to make things a bit easier going forward.

  • FormerMember
    FormerMember in reply to latchbrook

    Thank you - will do!