Well after 8 months of abiraterone my symptoms reared their ugly heads and whilst my PSA has risen throughout the months, it started to rocket at 50 points a day reaching 3600.
Still waiting on the official reporting but a quick look at a skull Mri has suggested something is pressing on my optic nerve, which explains the occasional distorted vision and swelling I am experiencing, but hopefully it is just a skull met which a blast of RT will deal with. The worst symptoms were in my right hip which prevented sitting or standing in the same position for more than 20 mins but 4Gy blast of RT has sorted that out.
By far the most debilitating episode was my constipation as my softners and pushers failed to keep up with the breakthrough usage and then the inevitable blockage and vomiting came on, I would urge anyone starting on opiods to learn keep a very close monitor on the laxatives v opiods so they can learn what their body needs.
As always my fantastic palliative care consultant saved the day, and in the space of a couple of days I went from my mood being in my boots with a deep black cloud over my head, back to some sort of normality... swapping my zomprph to oxycodon and upping my dex to 4mg daily. happier days returned and I could get on with listening to everyone telling me how well I looked.
So with no abby it is back to a second round of chemo...
Being transfusion dependent and with visceral disease (1 met in 1 lung) limits my treatment options. Onco preffered a different drug to the 1st time chemo (taxotere) so mitoxantrone is our choice.... meant to be palliative with no published benefit to life expectancy, QoL is the only target.
Just had my second dose yesterday and we will wait on the 3rd or 4th before making any judgement. Personally I am not sure it makes much difference in my circumstances, the key for me is getting regular zolodronic acid in the hope of keeping my Alk phos from rising and high doses of dexamethasone to keep me happy and mobile.
I have deserted most forms of exercise the last few months and the downside in muscle wastage and lack of fitness shows, so for the summer months my target is to get out and exercise whenever best I can.
unfortunately due to a family wedding I can't make Leicester, I would have enjoyed meeting up with so many of you, but hope you all have a great time.