Immunotherapy and joint pain

Hi Miranda t and sorry to read about the journey you are all on….. I have no experience in this but to widen your support platform can I suggest you look to putting up the same post in both the….

Carers only and Lung Cancer groups that you have already joined……

You may also want to look at joining our dedicated Supporting someone with incurable cancer group.

My husband as been on Pembro( keytruda) immunotherapy & zometa bone therapy & as had constant joint ache esp knees & ankle swelling. Oncologist is convinced nothing to do with treatment, though reading up side affects mentions joint pain.

Hes now had knee x rays requested from GP to see if a fall he had as set off arthritis in knees. He as no lung pain, chest pain or cough, just joint pain & ankle swelling. His mobility as been reduced to using a mobility scooter, aa swollen ankles/knees are too painful to walk. He takes cocodamol & oramorph, but still doesnt take pain away & due to a stroke several years ago cant take anti imflammories.

I hope you get some answers

Thanks for your reply, Tillyboo. We spoke to the GP a few days ago after a difficult weekend as he was in so much discomfort. Having suffered from polymyalgia reumatica several years ago, he is still on a maintenance dose of prednisolone steroids (2.5mg). GP suggested doubling the dose to 5mg for 7 days, which is still a relatively small dose. His pain & swelling improved within 24 hours….. His next oncology appointment is on Monday so we’ll mention it then - maybe it will be a different oncologist as there’s 3 who rotate, who might have a different opinion. Or maybe it is a flare-up of the polymyalgia. His next rheumatology appointment is next February! In the meantime, life is suddenly better, for him & for me, so we’ll enjoy it while it lasts!

Hi. Good to hear his pain & swelling improved. My husbands knees have been x rayed for suspected rheumatoid arthritis. If it is that, I hope they can prescribe some pain relief, due to having a stroke 8 yrs ago he's limited with certain meds. The GP & endocrinologist both agree if its OA in the knees, this will be the cause of the pain & swelling. Just need answers & treatment for it.

I wish you & husband well & all goes well at his next onco appointment x

Hi, we saw the oncologist today, a different one from the last two appointments. She said that the pain was quite likely to be connected to the immunotherapy. So clearly opinions differ! He’s to stay on 5mg Prednisolone for another 7 days, then try taking it down to 2.5mg. Hope your husband gets some pain relief for his poor knees sorted out soon, it’s tough seeing the one you love suffer,,,,

Ok thank you for this. I'm mentioning this on Thursday.

Although hes under a Professor at the Marsden, who suggested the STRIKE trial. He sees the same oncologist each 6 weeks before treatment, although last time there was another oncologist present & seemed very abrupt & rushed, whilst our normal one sat at the side & didnt say much. We were introduced, but we didnt catch her name & her accent was very strong & I'm deaf ( lip read). So my head was going back & forth between the 2 oncos, but our normal just didnt say much, apart from will get the next scans back & discuss asap, as she knows his anxiety & that hasnt happened. 

Thanks for your comments & will defo look into the med you said, hopefully hes allowed it. I wish u both well x