Haven't posted for a while, feel that I've been so busy, but after thinking about it I realise that I'm not any busier that I used to be, everything is just taking so much longer to do!
No significant side effects from immuno so far apart from breathlessness and a horrendous sounding dry cough - only happens about 3 times a day so not too problematic. I'm also feeling more tired than usual - all quite normal side effects I'm told. I have been experiencing all over body aches though that start in the night and only go about an hour after getting up after taking painkillers and steroids. I've got polymyalgia rheumatic. It's fairly well controlled by steroids but the same dose doesn't seem to be lasting the full 24 hours. At least I'm assuming it's the PMR and not the immuno - another question for the oncologist (who I'm seeing next week). Does anyone else have PMR or has anyone else experienced achiness after immuno?
I told a few people about the cancer two weeks ago. Unfortunately one (sister-in-law's friend whom I've never met) felt the need to blab so I've spent the last week meeting colleagues I'm close to and friends to tell them so they don't hear it second hand. It's been an emotionally exhausting week as you can imagine. I was furious - how dare a complete stranger take the choice of when and who to tell away from me. But now that it's done I'm quite relieved. It's taken a worry off my mind, I think repeatedly saying the words out loud has made me accept it more and I've been totally blown away by the love, support and generosity I've been shown. Every cloud has a silver lining I guess!
Adios for now. X
Written by
Aamar1
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Well done on your progress so far - sounds as if you're doing well. I agree - what a liberty - removing your choice of when/who to tell about your situation. It can be really tricky to do this - and some people don't know how to cope/react and others turn out to be golden. Hope they are there for you when you need them in future. hopefully you can get some answers from your oncologist or lung nurse when you see them. keep up the good work. good luck.
Rheumatic symptoms can be present as a side effect from some immunotherapy medications, it may be this has exacerbated your existing polymyalgia rheumatic which may need to be reassessed, which I know you will be discussing along with your cough at your next Oncologist appointment.
It is really difficult when a decision of letting people know about your health is taken out of your hands, albeit it has been some benefit to you. As JanetterR57 has said you are doing really well and all the best with your treatment.
As always if you need to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200
Well done - am pleased you’ve managed to share the news, albeit through 3rd party! People are very kind. Hoe your immunotherapy treatment has positive results and wish you the best of luck. Take care x
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