Pembro and Tiredness

  • 17 replies
  • 60 subscribers
  • 3200 views

Does anyone know if the tiredness lets up a bit or does it get progressively worse the more Pembro you have? Im on the 4th of 9 doses of Pembro and exhausted. No coffee will keep me awake. Any insights much appreciated.  Stage 3 Melanoma. 

  • Hi I'm currently on Pembro for stage 3 also .. I am.due to have my 5th treatment next week . I've not really had much side effects but after my first treatment i did feel more tired than usual but since then I've been fine with tiredness but I have spoke to a number of people on Pembro and they have felt tired most way through it so it is a known side effect .. hope it eases off for you :) 

  • Hi MBI, 

    Tiredness or fatigue is one of the most commonly reported side effects of pembro. For me, the fatigue fluctuates but is not progressive. I make sure I eat a healthy clean diet and exercise everyday. Then, I modulate the rest of my activities so I don't get too fatigued. I take a nap if I can and have reduced other activities, not hard to do during covid restrictions. I remind myself this is a small price to pay for an extended life. 

    My best to you!

    Cindy

    Melanoma Stage 4
  • Hi Mbl19700, I’ve had #55 of Pembro 2 weeks ago. It wasn’t got worse than from the start for me but we are all different. For me I would regularly feel tired for a few days afterwards, have naps and be at half speed, then back to normal before it would all need to start again. I’d just pace myself for those first few days. Tiredness would sometimes hit me like a wave, we were out for a walk and I honestly felt I wouldn’t get back to the car. I had to rest on a bench for quite a while. After that we always went for a walk but not as far out, and chose a circular walk so that I could gauge how many laps I could do instead of expecting to do the same as always. I’d usually have a nap at lunch time on those days I couldn’t help it. Macmillan do a leaflet on coping with fatigue. I rarely have any caffeinated drinks, that’s one thing I altered after my diagnosis.

    Ive put a link below to Macmillan’s info on tiredness, and although you didn’t mention it, I’m wondering if you are working and that must be hard if you are felling tired, so I’ve put another link in. 

    https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/tiredness

    https://www.macmillan.org.uk/cancer-information-and-support/get-help/help-with-work

    EDIT - I just remembered that when I mentioned it to one consultant she suggested taking paracetamol like you would for flu on the day of treatment and a few days afterwards to see if it helped, as an experiment not sure if she was humouring me, as my thyroid blood tests were always normal, and that’s something which is monitored that can affect tiredness, it may be worth talking to your nurses for their ideas as well. Your tiredness seems worse than mine was.

    Take care KT

  • Thanks and wish you well too. 

  • how are you now on pembro ? X 

  • Lost my energy and mojo completely. No interest in food everything has lost its taste or tastes of metal. Mouth is funny too. Feels as if it is swollen and raw tender on the inside.  Don’t know if it’s just this big C or the other big C! Turns out could be peri menopausal so waiting for blood results. 

    Hope your treatment goes well. Did you get a staging on your melanoma? 

  • Sorry to hear you are feeling this way on the treatment. Staging … they have never mentioned if I am stage 3a, 3b or 3c etc. I never thought to ask at the time it was so much to take in. 

  • Ok so you have a stage 3 melanoma.  Same as me.  
    took me a while to get my head around all the language, terminology etc etc. 

    keep in touch. 

  • Yes defo stage 3 , mines was a 2.5mm just above my eyebrow so lymp nodes were removed from my ear area  . 2 contained small traces of melanoma was what they told me. 
    so pembro was the treatment very 6 weeks that they recommended. 

    1. Hi  hope your ok! My mole was 2.1 mm and I had two nodes positive with tiny amounts in also from lymph node biopsy I was staged at 3b so your more than likely to be 3b like me I would prese :). If they offered treatment I don't think they always offer 3A treatment depending on what hospital etc as the risk of reoccurance is quite low compared to having to go through side effects of treatment etc x