So I was on pembrolizamob for 7 of 10 treatments but a CT scan in June showed effusions on both lungs and my heart.
I was on holiday in Turkey when I had an issue below my ribs, I thought it may just be gallstones or something. The second week I found it very hard to breathe when I went from the room to the pool or walked to the shops. By the end of the week I called the helpline to find out results of scan. They informed me I had the above and advised me to go to local hospital. I knew if I did I wouldn't get out for weeks so I waited till I got home and went right to hospital.
They carried out all the usual tests for it but everything came back negative, infection, disease and cancer. They put it down to a severe and rare side effect of immunotherapy. So far I have had immunoglobulin, steroids and rest but they can't get to the bottom of it. Thankfully they drained one of the fluid filled saca around lung and I can breathe semi normally but spent initial 4 weeks in hospital then further 2 weeks stints in hospital care. Thankfully no sign of cancer returning which I am glad of.
Been told this is so rare only 2/3 cases of this has happened worldwide but they still can't fix it so to speak. The globulin. Seems to be doing something as it has stopped the fluid fully returning but has came back slightly. It's gonna be a long recovery to get back to normal if at all.
I would still recommend immunotherapy though to anyone if offered.
