Had my #4 Keytruda infusion treatment and blood work. PSA doubled to 52 since last appointment and treatment 6 weeks prior. Disappointing and concerning.
Next appointment in another 6 weeks with bone and CT scans scheduled, which will hopefully provide a clearer picture as to where we go from here and what next steps need to be taken. That will be the 24 week mark of the trial, and may be the last of my participation should there be further disease progression.
Another bump in the road. Onward and upward.
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HopingForTheBest1
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I have been following you and your progress. I wish I have something useful to say. It’s the lack of my knowledge. I pray for you and hope for the best outcome. Things can change for the best. Happy holidays.
Thanks for the post, Hoping. Since you are in the midst - can you inform on the practical difference between a "trial" and "study"? I have presumed that in a "study," the participants are left blind, but in a "trial," can the results/journey of other participants can be shared (i.e., are they being shared with you)...?
My point: Is there an expected "PSA curve" with Keytruda? Could your PSA rise be caused by a dump by distressed and dying PCa cells (as with other chemo)? Or is there is no way of knowing, and scans are the only way to see the macro-metastases...yah, I know, the micro-mets will always be there for us... and in the meantime you have 6 weeks of trying to be a zen master of waiting?! Thanks, Happy Holidays, and good luck with the zen! - Joe M.
I’m sorry to hear the trial treatment doesn’t seem to be working. I had thought of checkpoint inhibitors as a magic bullet for gene repair mutations. Your knowledge and experience are way beyond mine, so my suggestions of where to look next nay not be of help.
I don’t think doctors have a good understanding of the relationship between the immune system and the tumor microenviroment. Does your MO have a supposition of why the doesn’t seem to be working?
Gutted to hear that PSA rising. It looked like this was was one of the best treatment plans available.Are you due another AC-225 treatment? I'm hoping that this might hit it back down.
I'm just not so sure that this is not working. Although I have no expertise and anything I may have read I haven't retained.
I just hope the PSA rise is as has been said that phenomenon so common with chemo and other systemic treatments of picking up dead Ccells. You are so knowledgeable you may have that answer...I don't know.
The scans will be what we wait for baited breath on. A month and a half flies by unless you are waiting for something as important as knowing the status of your cancer.
I truly wish the best and again thank you for taking part in a trial. This trial.
You have been under the gun for quite awhile now so as far as pain you might not know what is what (SE's vs. mets) but how do you feel ?
Having PT twice a week to help with side effects. Dr also reduced my Enzalutamide dosage by half for the time being to see if my itchy rash and balance issues improve.
I was thinking of you just a few days ago. Thanks for keeping us in the loop.
I’m so sorry that your PSA has risen. Hang in there! Dr. Tagawa seems great so hoping he can help you find the right treatment going forward.
Keep hope alive . Don’t give in . It could be a temp glitch in the Psa . You’ve been tested and retested in treatments . One hec of a ordeal . Yet you show no self pity or fear . You have a great inner strength . I’m pulling for you to get better and for the pc to run away ..It doesn’t know who it’s fn with . You deserve a break from this bullshit brother . ✊🏻🎄🤞🏼🙏. Scott
I have been following your progress with great interest. You inspired me to reach out and I connected with Dana Farber. It appears I shall be joining in the LuPSMA 617 trial. Only good thoughts and prayers sent your way.
It is so important for patients to seriously consider participating in a clinical trial, not just as a final resort. Many trials do not have a sufficient # of participants. Best wishes to you and thanks so much for your participation.
As others, I haven't much to offer other than positive thoughts and wishes heading your way in the hope that you may find some relief with a working regimen that kicks your PCa to the curb!
And if it turns out that Keytruda does not work for your case, then at least you know and at least you tried, and contributed to the knowledge for all who follow (Thank you for your service). So then, do you have a plan for what to do next in that case, to put the demon back in its box? On your side and also hoping- Paul
Am meeting with my Oncologist tomorrow to discuss exactly that. It is essential to always have a plan B. I do still have a number of available treatment options, and new ones are coming out regularly.
I’m sorry Keytruda doesn’t appear to be working for you. I’m convinced that eventually immunotherapy check point inhibitors will be the solution for this disease. Stay strong brother!
I checked my husband's PSA graph and there was no blip in the steep slide to undetectable after the 5th Keytruda infusion. I hope that your side effects are minor and reversible and that you may soon find another treatment more suited to your biology.
Hi Hoping - What Keytruda trial are you on? My husband did a Pembro/tablostadt trial. Keytruda did not work for him. He had a lot of side effects as well. I hope you have good results on your scans!
Thank you for keeping us updated on your progress. I am sorry that you are not getting the results you hoped for. It is a constant roller coaster. Keytruda stopped working for my brother as well after eight months. However, it could possibly work for someone else. The beauty of posting updates is to let other people know what may be available to them. I have been following your journey as well. Please keep us informed as to your next treatment. Best of luck to you!
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