Saw Oncologist this morning, my PSA had gone from 0.028 most of last Summer to 0.78 in Jan and has now shot up to 7.9 . They will do a PET scan to make sure it hasn't spread to organs and start Xofigo 30th April.
The would have started the Xofigo next week but they said this Virus crap makes everything logistically more complicated.
So sorry to hear! Has there been any talk of targeted radiation if the PET scan shows only one or two hot spots? Just curious, not trying to suggest anything.
Do you have any symptoms? Or is the rising PSA the only sign?
Hoping the Xofigo works for you.
I have Mets to just about every bone so no targeted radiation. I have noticed increasing pain in Femurs, which was my first symptoms and the most damage was done.
The pain is managed, not 100% but I have some quality of life and trying not to complain lol
If I remember correctly, you've posted previously about the trade off between pain control and not being a zombie all day. You're certainly allowed to complain, but yeah, it's best not to get carried away with it.
I do hope the Xofigo reduces your pain. I've personally experienced reductions in pain after treatment. It's a great feeling and one I hope you and all the other brothers here get to experience.
Have you been on any treatments during this time period.
Last year they started me on Chemo, I responded well as my original PSA was 1386, Oncologist said I've done well for it to last almost a year
You might go on an ADT drug until your xofigo treatments start.
Sorry I totally forgot, yes I was also on ADT (Diphereline) then I had the subcapsular orchiectomy last Nov.
I did not handle the ADT well, the hot flushes were brutal 20+ times a day although it did a good job with the PSA, my MO thought the orchiectomy was the better survival option for me and would give me a better chance. I had not illusions of ADT Holidays or remission and no regrets on that choice.
You might give casodex a try. It's not as strong as the newer ADT drugs.
Are you in Australia? Is Provenge an option there? If so, the combination of Provenge and Xofigo was recently found to be especially beneficial:
ascopubs.org/doi/abs/10.120...
No I'm in Europe (Estonia)
Can you get sipuleucel-T there?
😩Sorry about that Zetabow. Your PSA is still a far cry from where you started Out but I liked the.008 better. Keep swinging. You deserve a break .😎
0.78 to 7.9 from Jan to now?....You sure they put the decimal in the right position? That's a big jump.... If accurate, then please do whatever is needed to move that decimal to the right. Keep on keeping on....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 04/17/2020 7:41 PM DST
Keep fighting the fight. Staying positive during these tough times is medicine in itself. Your brotherhood is here for your support.
Hi. Hope you are still walking. Archery from a wheelchair would be difficult. You might need to get a crossbow. I suggest a Gatling gun; no need to retrieve arrows. Best of wishes.
I've not been able to shoot for 4 months now, too much pain in my shoulder. Friend from an Archery company sent me a Xbow this week to try, it's been fun. As you can imagine owning a shooting center and not been able to shoot got me down a little.
Know how you feel. Lots of things I can't do anymore. I am planting a garden this year (they told me not to dig) and am so proud of myself it's unbelievable. Tall_Allen's link to Provenge plus Xofigo is a good read. Hope the virus isn't affecting your shooting center a lot. The world may not be upside down right now, but it sure is sideways.
We're not allowed to hold competitions (we've had to postpone this Summers world champs to 2021) but the range is open, people have to call first and to maintain social distancing and of course not to come to the house. It's nice that I get to see some friends (outside at a safe distance). I'm sad I won't get to see friends from around the world this year, hopefully I'm fit enough for 2021 and we can all catch up then.
Something else I wanted to ask, I've recently noticed even though the colour is normal my urine smells foul, normally I would put these things down to taking drugs but I've been taking these Oxycontin, Pregabalin Zentive and Tannacher (Flowmax) for quite a while now.
Is it something I should be concerned about?
I had first blood test since the Xofigo infusion (2 weeks ago) RO called to say P-LCR is low and wants me in next week for another blood test.
Anything I can do to improve things or to watch out for?
Nothing is simple with me lol
PSA going down--Orchiectomy surgery?
Approved for Xofigo
Xtandi with Xofigo??
