This is a continuation of my PCa journey of three months on Firmagon and 39 treatments (70.2 Gy) of Salvage Radiation for my BCR that occurred about 6 ½ years following Da Vinci RP in November 2011.
When I started Firmagon in July 0f 2018 my PSA had risen to .78 ng/mL. My testosterone total was 609.1 ng/dL. My free testosterone was 60.66
30 days after the first two Firmagon shot (240 mg) my PSA reading was .38 ng/mL. My testosterone and free testosterone had drop to 16 and .9 respectively.
30 days after my second Firmagon shot (80mg) my PSA dropped to .30 ng/mL. My testosterone and free testosterone had dropped to <2.5 ng/dL and not detectable respectively
30 days after my third and final Firmagon shot (80mg) my PSA had dropped to .19 ng/mL. My testosterone and free testosterone remained at <2.5 ng/dL and not detectable. I had planned on doing three more months of ADT for a total of six months but a disagreement with my doctor resulted in my ADT treatment being denied. The doctor wanted me to get a three month shot of Trelstar and I refused based on the fact that I was doing fine on Firmagon. The doctor’s explanation was you could only be on Firmagon for three months which I knew was incorrect.
On September 28, 2018 I started salvage radiation completing the 39 treatments (70.2gy) on November 20, 2018.
On December 19,2019 I had blood work. My PSA had dropped to .15 ng/mL. My testosterone and free testosterone remained at <2.5 ng/dL and not detectable.
On January 21, 2019 I saw my Radiation Oncologist for my eight weeks follow-up to SRT. He did not feel the .15 ng/mL was anything to be concern about as he said it often takes a year to reach the lowest reading.
On March 5, 2019 I had blood work again. This time my PSA was .16 ng/mL and my testosterone had risen to 326 ng/mL I did not get the reading for free testosterone.
On March 12, 2019 I saw my urologist and reviewed the latest blood test results. He wasn’t that impressed with my PSA reading and he was surprised my testosterone had risen to the current level. He felt that so long as the PSA stayed stable and did not start going up no action was necessary.
My PSA has not stayed stable it has continued to rise! Here are my last PSA readings. Unfortunately, there are three different labs involved.
Mar 5, 2019 .16 ng/ml
May 22, 2019 .34 ng/mL
June 11, 2019 .30 ng/mL
July 22, 2019 .41 ng/mL
Aug 8, 2019 .51 ng/mL
Sep 12,2019 .43 ng/ml
To be frank I was surprised my PSA had not gone to a much lower level (<.1 or lower) having been on Firmagon and then having SRT.
On Sep 19, 2019 I met with my Urologist and reviewed my Sep 12, 2019 PSA. His conclusion was that SRT had been a failure and that I still have active prostate cancer. I had the Axuim scan on May 2, 2018 at a PSA reading of .5 ng/ml. It did not reveal where the cancer was. My urologist felt it would not be beneficial to get an additional scan at the .43 ng/ml PSA level.
Additional research on Axuim has just about convinced me that it would be best to wait until my PSA is at least 2.0 ng/ml. If the scan locates any lesions, depending on where it (they) is I will elect either surgery or SRBT.
If the 68Ga-PSMA-11 Pet/MRI scan becomes available before I reach 2.0 ng/ml PSA I will get it as soon as I can.
I will be 76 in February 2020. I have no other comorbidities at present. Although I have more than my fair share of aches and pains from injuries, I am still able to do many things I most enjoy even if I suffer physically after the activity. I value the quality of life I now enjoy over quantity of life I may have in the future. I am reluctant to go on ADT and diminish the quality of life I now enjoy! At my current PSA reading I am not interested in ADT. If I cannot pinpoint where the PCa is and/or if I develop pain(s) that can be directly linked to PCa I may be put in a position that I have to choose between ADT or a possible slow death!
I had another PSA test on Oct 9, 2019 at a VA C&P exam and it had risen to .70 ng/ml. So, my PCa continues its’ progression. Mentally I hope I can hold out until my PSA gets to the level that one of the scans can pinpoint the location of the disease. Meanwhile the “Big C” is riding on my shoulders (every new ache or pain has me questioning is it the PCa) and as you know it is a heavy burden to carry.
My next PSA will be in December followed by a visit to my Urologist. Meanwhile I will continue to play Russian Roulette with my PCa.
It would be interesting to hear from anyone in the Pca community that has allowed their PSA to increase without going on ADT and at what PSA reading did you experience a clinical presentation of the disease?
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