To cut a long story shot, I'm extremely scared and worried about my Dad and really need some advice...
Bit of background:
- Dad was diagnosed with advanced metastatic prostrate cancer in 2013 (solitary rib mets) - presenting PSA of 24
- Gleason 3 + 4 plus score 9 in 12/12 biopsies
- further mets since diagnosis in ankles, knees, shoulders
Treatment to date:
- LHRH analogues since diagnosis (got his PSA down below 0 for approx. 18 months)
- Enzaluthamide from Mar 2016 - Feb 2018 (kept his PSA below 0 for 12 months and then it started to rise-doubling each month)
- Docetaxil - Mar 2018 - Aug 2018 (8 cycles completed out of 10 but with no positive effect on his PSA. In fact, it has continued to rise rapidly and the most recent reading was 897 at the end of August 2018. )
He finished his Chemo back at the end of August after the decision was reached that it wasn't working for him and it feels as though we've been left in limbo ever since with no clear treatment plan.
His Oncologist referred him to Royal Marsde in the hope of getting him onto a trial but they have apparently said they might not be able to help and it now also appears they may in fact have asked for further tests (sorry to be vague but comm's haven't been make overly clear to us as we've only managed to gain this information from PA's and not Dad's Oncologist)
Dad hasn't been seen by his Oncologist, or anyone for that matter, since he finished his chemo back at the end August and he's now been asked to go for a laproscopy and colonoscopy next Tuesday.
He had a bone scan over two weeks ago now and we've still not had the results from that and his last CT scan was largely stable.
I guess my question to all of you is...is this normal?! We seem to have gone from regular contact to radio silence and frankly it make me concerned as I would have least expected him to be having his PSA checked or appointments with his cancer nurse.
To top it all off, Dad's also been really off colour since stopping the chemo but keeps playing it down and is reluctant to call the hospital - fatigue, nausea, occasional vomiting (but only a bit of retching and mucus), burping plus a real loss of appetite which is resulting in weight loss.
I know it can take time for the chemo and steroids to work their way out of your system but as you can see from above Dad's chemo finished quite some time ago now and I'm so scared these symptoms are a sign of something more sinister.
Any help or advice would be greatly appreciated - I know a change in treatment can take time to put into action but I feel so in the dark and am worrying myself sick this end. All I keep thinking is how high his PSA is now from when this all began.
Thanks for reading.