Those following my journey know my Radium 223 basically did nothing and my PSA went up to 300, in Oct my Oncologist tried Zytiga combined with Prednisolon, within a couple of weeks my PSA dropped right down to 88 and I even had an improvement in pain levels, which allowed me to drop the large quantities of Oxycontin. I was so happy to have such a dramatic improvement.
But it was short lived the last 10 days pain started to climb and my appointment with Oncologist today showed my PSA is climbing again (PSA 110), he will see me in Jan and if it's still climbing he will try Xtandi, it seems whatever they try just doesn't last very long.
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Zetabow
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I know you've had docetaxel. You might want to discuss Jevtana+carboplatin before you try Xtandi. Sometimes chemo resensitizes the androgen receptor. Have you had a tumor biopsy recently? They often change over time.
Hang in there, wishing you well. Where is your Pain? Do you have Bone Mets like me?
Been taking the Prednisone (5mg) - zytiga (1000 mg) - prednisone(5mg) plus calcium D3 in the morning and Calcium D3 at night. My PSA was at 800 3 years ago. It took a long time for it to come down, over a year to hit low numbers to undetectable. My phosphate number was at 3000 (relates to the bones & liver emzymes) took over a year and half to hit 150 and lower. A lot of bone pain, still have it in my ribs. For me it took time. Never had radiation or surgery. Surgery was out of the question for the cancer was everywhere, lymph nodes, bones and organs. Seemed like the Zytiga took a long time, just saying. Hope they find an answer for you.
At diagnosis my PSA was 1386 two years ago and scan showed mets pretty much everywhere, chemo got PSA down pretty fast and I've been doing quite well until the Radium 223, they did try something else before similar to Radium 223 but that failed as well, so basically it looks like the last three treatments have failed, so I'm not full of confidence right now. I've been in pain since diagnosis so it's not been easy.
I don't see the point, in a few weeks it will be Xmas holidays my PSA likely won't give him the info he needs in less than 3-4 weeks, if he see's it's climbing faster than normal after 4 weeks he will take action. When it rose from the Radium 223 from 0.028 to 300 it was rising slowly until about 150 then 3 weeks later it had reached 300. At the start they expected some rise it wasn't until it reach 150 did they start to worry and stopped the Radium 223 two sessions early.
Well Zeta I bow to your knowledge.... The road to hell is paved with good intentions.... So I'm with you "whatever sinks your Sphinx".... Sorry... I will delete that post of 12/05...
No worries, I'm happy with my Oncologist, I was VERY poorly when I first met him, he turned things around for me. I just glad for the extra time with my children.
Sorry to hear this. Hopefully they'll find a solution for you
I’m sorry zetabow that you’re on such a rocky road . My prayers go out to you to receive some reprieve from the pain and suffering ... keep swinging at it ! 🙏🏼
It's weird, last 3 days the pain peaked to a point where I couldn't touch some bones without intense pain and I had gone up to full amount of pain meds, then over a period of a couple of days the pain went down to almost nothing. I'm very happy at the prospect of a good Xmas with my family but really wonder about these flare ups where certain bones become so sensitive to even the slightest touch/pressure. Has anyone else experienced this?
Wishing you a wonderful Christmas and precious time spent with your loved ones. 2021 is going to be better for all of us so might as well wait for it to come and get the beast under control. Best wishes.
I am sorry to say that you and I seem to be on similar paths. I recently completed 6 sessions of Radium 223. My psa hung around 33 for most of the treatment. 3 weeks after last treatment my scans were lit up from shoulders to femur and my psa was 105. Three more weeks and it was 300. I am currently on docetaxel/carboplatin every three weeks trying to smack it down before I begin Rucaparib. I do have gene mutations ATM and BRAC. Luckily no pain at this time. Best to you!
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