After some stable weeks (our journey described in my profile) with no awful symptoms from enzalutamide and PSA down to 0.7 10 days ago, from last result of just under 5.0, we are now undergoing a new adventure.
On Sat night John developed a bad pain in his chest which was worse when he lay down. He was also a tiny bit breathless. Trip to A&E to be on the safe side as he'd been told enzalutamide can affect your heart. As all the heart tests were fine it was suggested he had a Pulmonary Embolism so he was given thinners and an appointment for a scan this morning.
Outcome of this was that it wasn't a clot but his lungs were inflamed and so he is on antibiotics for this. He's had no cough or fever or anything indicative of an infection though.
However the scan did show up some 'new nodules' which the doctor says could be caused by the infection, or could be secondaries from his prostate cancer, or even a new primary cancer so we are back waiting for advice, although this time under the lung team.
His ever decreasing PSA level plus the results of the scan of his soft organs about 6 weeks ago which was clear, makes us hope that it's this infection and if not then whatever it is is in the very early stages but is this wishful thinking? We really did hang onto the belief that as long as his PSA levels were going down things were dormant but now we feel quite wobbly and less reassured.
Not sure why I'm posting as we are in the hands of the 'next appointment date' Gods but we are so fed up that things are up in the air again!
Hello Ally52
Thank you for the update although I am sorry to read what's going on with John. A Prostate Cancer journey is hard enough (don't I know it!!) but you don't need any extra surprises.
Like you I would hope the changes in 6 weeks from one scan to another would be an infection. At least you have found it and it's being looked at.
Not sure why I'm posting
You are posting this as you are worried and that's quite natural and you want to share and get it out of your system but you don't want to upset John - that's normal - and it's fine to vent here rather than with family.
Keep us posted and remember the Support line is there for you on 0808 808 00 00 (8am to 8pm 7 days a week). As "Busby" on the BT advertisement (you are too young to remember) said "It's good to talk".
Best wishes - Brian.
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