I had my Firmagon injection today. I think it was the fourth one. Also started Zitiga shortly after starting Firmagon. About a month later I had my first post ADT PSA test which was 11.10 ng/ml I was hoping for something better but my oncologist says it some times does not drop quickly and he is unaware of any real correlation between TTN and treatment success.
I have been having all the side effects although I did figure out how to reduce hot flashes. But just recently I started having what really feels like bone pain in both floating ribs although one seems to be pain free now. The pain is not severe unless I put weight on it which does make finding a comfortable sleeping position difficult.
So instead of waiting the full three months to the next PSA test I had one today. I was hoping it would be lower and ideally undetectable. However it has risen to 14.97 I called the oncologist's office to speak to the nurse about this and also about new side effects like muscle stiffness and difficulty breathing. She put me on hold for what seemed like a longish time and then immediately scheduled me for a phone visit with the oncologist tomorrow.
Does this suggest that my PC has advanced to castrate tolerant? What are the next step and or questions for oncologist tomorrow? What prompted the start of ADT was a very rapidly rising PSA and growing hylar and paratracheal lymph nodes. Have not had any PET or CT scans after the ADT started 4 months ago.
Difficulty breathing is one of the many side effects of Firmagon so I was not terribly concerned but now that my PSA is not dropping on ADT makes me concerned that it could be the lymph nodes interfering with breathing or it could have spread elsewhere?
Any advise I can get before tomorrow at 8:45 left coast time would be great.
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spencoid2
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no, still on firmagon and abatirone onco suggests getting another PSA in a month and also testosterone test. if the PSA and pain are still increasing we probably need to change treatment and or do some more scans.
is docetaxel usually the next thing to try? the side effects sound wonderful.
there is a cool sounding trial at UCSF using PSMA as a treatment not diagnostic.
my known metastasis are pretty much inoperable (mediastinal high surgery risk)
things may have changed here is a snip from an email from one of the study coordinators.
This study "177Lu-PSMA-617 and Pembrolizumab in Treating Patients With Metastatic Castration-Resistant Prostate Cancer" (NCT03805594) is open to new patients and is for patients who have not undergone docetaxel treatment. It seems like you could potentially be treated on this study
i still an not certain that the PC is castrate resistant, need another PSA and maybe scans. However I am thinking t hat this is a really good thing to try. It could be a cure or at least could reduce micro mets that seem to be turning into bone cancer. Also the lymph nodes are in a very risky area for surgery. If I do have CRPC and start on doxycetal, the average life expectancy is 13 months and I would be pretty lucky to "survive" 5 years without sopme new miracle cure. and the side effects of doxycetal can be really awful.
So it seems to me that (and maybe even if it is not CR) it makes sense to try to get into this trial?
Sorry, my mistake - in fact, they want no chemo since CR, but you have to be CR. There is another study of Lu-177-PSMA-617 for mHSPC that set to begin May 3 (they haven't yet announced the sites). Here's a full US list:
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