Long term effects of Pembro

Mbl19700 

Hi Maeve

I'm sorry to read that you are suffering from long term side effects of pembro. 

I've searched the group for previous posts which mention pembro and found these posts for you to have a look through. Not everyone will have finished treatment, but you should be able to find a few who have who you could contact.

It would be great if you could pop something about your diagnosis and treatment so far 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.

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You can end up with adrenal/pituitary failure from immunotherapy. They can test your cortisol levels to see if this is the case. My husband had this effect, but going on to a small regular dose of hydrocortisone has addressed the problem. I think all immunotherapy side effects can happen during treatment or up to 2 years afterwards.

Thanks for replying - really appreciate it.  Sorry to hear your husband has been through all of that - pretty gruelling. 

I had three surgeries and 9 cycles of Pembro.

Do you mind sharing what his symptoms were?  Fatigue?

He was experiencing fatigue and cold to the point that he was tucking himself up in a sleeping bag on the sofa about 5pm pretty much every day, and sometimes earlier in the day. He had been working from home when he could, but if he needed to do something taxing, like interviewing someone, he needed to take a little nap before hand to be able to keep focussed for a couple of hours. He couldn't do any of his usual social activities. At that point he'd had about 6 months of Pembro and was 3 months clear of radiotherapy.

Oh blimey you have made me feel so much better now - I was beginning to think I was going mad - it sounds just like what I am experiencing.  Thanks so much. I wish you both well.   Keep in touch. 

Hi, I finished my year of Pembro last August and still feel tired.  I had only minimal side effects during the treatment - constipation and painful hand joints.  My stamina seems to be permanently affected, my tolerance for concentrating too.  I can't expect to get away scott free so I just adjust to life daily. I have four monthly scans and OPAs but no blood tests so at least there's people to ask questions of. 

Thanks Allotment Lover.  I was told oh it’s probably menopause and put on HRT.it gave me some relief but it’s still there. Like you I’m in bed at 9 am and I was a definite night owl. But not anymore. Desperately trying to find a solution. Haven’t gone back to work. Just not able .

Hi, it's worth asking your local surgery or oncologist or skin specialist nurse about having a check of your thyroxine and cortisol levels as if it's caused by either of those then it's fairly straightforward to correct. I don't know if there's a time limit on feeling tired after treatment?   Please don't feel guilty about being off work, you're not exactly skiving hon!  

Eat well, rest, get blood tests done, be kind to yourself plus remember you are also healing emotionally as you've been through major trauma!  

I've found it hard to not exert as much energy as I used to, frustrated too as I've an alottment and I'm not used to having to rest so much. Being 60 this year is certainly no excuse either. The Highlander who is a Champion on here has a good take on life after treatment and recommends a paper written by a Dr Peter Harvey entitled something like 'after treatment ends-what happens next? ' it's a good read and may give you some peace of mind in your recovery time. 

Meanwhile keep talking and sharing on here, join the "life after treatment" group on here for chats with others in just your situation and look after yourself.  Sending you a big virtual hug xx