Fatigue post immunotherapy treatment for melanoma

Hello , welcome to the group and congratulations and touch wood I’m also doing good although I’m still on Immunotherapy Pembrolizumab. I had Pembro for a year (April 2017 to 2018) and used to feel tired for the first week of treatment every three weeks, I didn’t want to describe it a fatigue as I felt it wasn’t as bad to describe it as that.

https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/tiredness

I read the McMillan sections on fatigue (I’ve put the link in above) and decided to get more active when I knew there was a possibility of coming off treatment early and I really wanted to get back to normal and start as soon as I could.  As Pembrolizumab affects your blood sugar levels and as I was diagnosed as type 2 diabetic I was never really sure if my tiredness was due to messing up blood sugars when I was on treatment, and I have never asked that question. When I mention I’m tired for a few days after treatment it’s noted down but it is no longer a whole week it’s a few days. I was also aware that my blood results weren’t throwing up any thyroid problems or blood sugar problems and in fact I’m off all meds for diabetes and my last blood test would suggest I’m in remission for diabetes. 

Im also aware that I don’t always sleep as well as I should the night before treatment and that can be why I’m tired after treatment, that and the fact I usually go for a walk on treatment day. I also get some anxiety doing new things sometimes which can make me feel tired, soon after my last treatment I had a funeral a few hundred miles away and that’s emotionally and physically tiring. 

I suppose I’m saying that I’d be looking at my life style for reasons of fatigue/tiredness as well as Immunotherapy. I haven’t read anything about long term side effects for Immunotherapy, so if you find anything please feed back here. The macmillan link talks about doing a fatigue diary, to see if you can identify a reason and to see what helps, and that you can talk to your SCNS, and also to Macmillan on the support line or in the ask an expert section.

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask_a_nurse/discussion

I don’t know if my personal experience helps but I found being more active meant that when I had to go back on to treatment again, it wasn’t as bad, but that could be because my body is getting more used to it. But being more active helps your immune system so I’m happy I try to be more active and it helps me emotionally. Last week I went to see a park run, https://www.parkrun.org.uk

they are free and can be run, walked or jogged, or do the couch to 5k method,  the Macmillan bus people that was in my town last week mentioned it to me and that once a month their support group, gather to do it and have a coffee afterwards. It was too much for me to try today as I had treatment yesterday and so I pace myself in these first few days. I know as you are off treatment it’s not the same for you. My local gym has a cancer group which I went to,  now I go to walking Netball and for walks with my husband, I hope you find something you like.

I hope you find your way through this, let me know if you find anything useful 

Has your thyroid and pituitary been tested? x

Has your thyroid and pituitary been tested? x

Hi JonH83

I, like you, am NED (no evidence of disease) after immunotherapy. I have been NED for three and a half years.

I did have a life-changing side effect. My anterior pituitary gland no longer works. This means I do not produce thyroxine (from the thyroid) and cortisol (from the adrenal glands) - as these hormones are essential for life, I take them in pill form. I also no longer produce many other hormones, but I am living without those. I think if you had a permanent side effect like mine your oncology team would have picked it up.

Have you talked to your GP? Mine is great.

He or she could organise blood tests to check for vitamin/mineral deficiencies. Common ones that cause fatigue are vitamin D, B12 and iron.

It is possible that your fatigue is an aftereffect of being on therapeutic doses of steroids. You could ask for an 8am cortisol test to check that your adrenal glands are producing enough cortisol. (Your adrenal glands would have stopped producing cortisol when were on steroids and, sometimes, can be a bit slow getting going again.)

Like athw suggested, you could also have your thyroxine levels checked.

It is also possible that your fatigue is psychological. Initially I felt good when I was recovering from immunotherapy. They treatment had 'worked' and I was on steroids because my anterior pituitary gland had failed. Then time passed, my steroid dose was reduced and I felt crap most days. It was like my life had been saved but it was no longer the life I remembered.

I saw a psychologist privately for about eight sessions. He was excellent. He helped me examine my attitude and come to terms with the truth that the job I had dedicated my life to for years was now dragging me down.

He also told me that I was not depressed and that, in his opinion, my fatigue was physiological.

I am doing much better now. I gave up the job and am self-employed. I am much more skilled at handling my inability to produce loads of hormones - it took over two years to refine taking the replacement hormones and I am still tweaking it. I take vitamin D and B12 supplements, which help.

All the best

Moira

P.S. My husband had appalling fatigue about twenty years ago. It crept up on him so neither of us realised how bad it was. He turned out to have hypothyroidism AND sleep apnoea. Thyroxine and a CPAP machine eliminated it completely.

Thank you MoiraA,

I have had various things checked and they cant find anything out of the ordinary.  I think you may be right that it is partly psychological but I do try not to think about being tired and get on with things but then tiredness does hit me and I have to physically stop. 

Maybe it is something to do with the steroids as I was on them for about 2-3 months as it took a while to reduce the side effects (interestingly they initially thought my pituitary gland was damaged and I was put on cortisol pills but these didn't work - it turned out to be liver damage/hepatitis).  

It is interesting what you say about your job as I am certainly coming to the conclusion that my current role isn't right for me (your phrase 'dragging me down' rings true) and hopefully a change may help.

Thanks again.

Hi JonH83

Livers take 18 months to regenerate. You may feel better when you hit the post-18-months after the hepatitis point.

Just a thought

Hi KTatHome,

Thank you very much for your reply.  I have been reviewing the Macmillan information on fatigue and have been trying to stay as active as possible - some weeks I can do exercise most days but other weeks I get home from work each day and just don't have the energy (and that's not an excuse for being lazy, honest!) and just feel a bit sick from being over-tired.  Its almost like I don't have the same level of stamina than I used to - which is fine its just when I mention it to consultants they always seem surprised that I should be feeling this way, which makes me feel there is 'something wrong'.  Maybe there isnt anything specific and its just the combination of everything I've been through.

Sorry to hear you are still on treatment but hope you continue to do well.

Hi , it sounds like you are listening to your body and resting when it’s needed and getting active when you can, and let’s face it I don’t work so I have to get active, where as you might already have an active and demanding job, as well as that need to feel normal again. So please don’t think I’m labelling you as lazy or pulling excuses, the life after cancer group often post a link to Peter Harvey and his thought on a sort of post traumatic stress after cancer and how it takes time to get back to normal, I’m not sure how long you have been off treatment? and sometimes our attitude changes to what we would have put up with before, as we seek to be a better happier self as we have a second lease on life. 

I hope you find a way forward through this.