I wanted to follow up with a question I have regarding my care. What else should I be doing or consider at this point?
I had a prostatectomy in September 2021 after I ran a self ordered blood test in April 2021 and had a psa of 15.2. Asymptomatic and no signs or family history.
RP pathology was 4+3/ PSA 16.2 EPE, SVI, PNI and tertiary 5 at the bladder neck with 36 lymph nodes clear.
October ‘21 – psa <.1
January ’22 – psa <.1
April ’22 – psa .1
June ’22 – psa .3
July ’22 – psa .4
My radiation oncologist was going to just radiate the pelvic bed but I insisted on another PSA test which came back at .3. That made me eligible for the PSMA pet scan. The scan showed a lymph node in the deep right iliac area.
I was supposed to start EBRT in July and got covid the day I was supposed to get the first Lupron Injection. So I had to wait until the COVID had cleared up. I had 33 rounds of 66 Gy of EBRT to the prostate bed and pelvis. I started July 18th and finished up on August 31st. I was happy to get that done and over with. My first PSA test ordered by the hospital Lupron clinic was <.1.
Anything else you would suggest to inquire about at this point?
The Lupron hasn't been too bad other than being a little more tired than normal and when I ride my bike on a 20 to 30 mile ride it feels like I rode 70 to 100 miles many days. I have noticed some muscle loss and less endurance. Also some hot flashes here and there.
Thank you so much for your insight and feedback!
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Cyclingrealtor
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Sounds like you’re doing all the right things. A lot of guys are unaware, there are usually support groups to join if that would help. I have found them very helpful. Check with your doctor/hospital they may have some information. Keep on pedaling!
All good advice here. I would add weight lifting for the entire body, added to your cycling. Testosterone suppression wastes muscle quickly and it’s very hard to get back later, when you’re a bit older and even more tired from the Lupron.
A dedicated lifting program will kill the fatigue and help prevent abdominal fat gain, also a very common effect of ADT drugs.
Remember, the Lupron itself does not cause fatigue, it’s the near eradication of testosterone.
Good insight. I have them and need to integrate that. I was also looking at getting a rowing machine. I have noticed some muscle loss already in my upper body at 2.5 months in.
Agree on rhe Zytiga/Abiraterone advice. Just listened to a presentation from MO from Dana Farber and he stated that the standard of care for aggressive cancers like yours and mine is to combine Lupron and Zytiga. I am on for 2 years. have agll the side effects but it has been shown to slow the recurrence by a significant amount of time. The study was called Stampede. All the best
Your bicycling experience is completely normal. Last year while getting Eligard shots I had to reduce my bicycle ride lengths from 40-60 miles to 25-35 miles. And the hills became mountains. The last time I rode last year before the weather turned cold, about 35 miles, I almost fell on my face when I got off my bike because my legs were so wobbly. This despite exercising, working out, etc., etc. the whole time I was getting the shots. I'm off the shots now, so my leg strength is returning and I'm back to riding longer rides, though still not quite where I was before the shots. But the longer you are on ADT, the harder physical exertion becomes. Like the old saying goes, it's not nice to fool Mother Nature (by suppressing testosterone).
I can still knock out a 35 - 55 miles but definitely not at the pace I used to and feel like it's double. My daily rides are 22 - 32 and with that there have been several days that I feel like I actually rode 60 mile/ 5K ft. 🥴 Do you drink any protein or amino drinks before or after riding? I was wondering whether they would help offset the adt.
I never tried drinking protein or amino drinks before or after riding, but it might be worth a shot. Or possibly energy bars. Trouble is, I put on weight during ADT, so adding more calories didn't seem beneficial. Eating bananas before riding seems to help some with leg cramps, though (potassium). I usually stop somewhere around half way into a ride and buy a soda to drink on hot days, and the sugar probably provides some energy, plus it gives me a break and a chance to cool off. Though it's a tradeoff because of the calories again, but you probably burn them off while riding.
Lupron, worked for about one year, then urologist ADDED Eligard and the combination worked for about 2 1/2 to 3 years. This past July, urologist ADDED Nubeqa..............will find out how effective the three meds work together in less than two weeks.
Post surgery my urologist used standardized psa testing and we were supposed to aim for adjuvant radiation. Well 8 months post surgery psa came back at .1 and 7 weeks later was .3, so the adjuvant radiation turned into salvage radiation.
It seems that Kaiser Permanente's approach is try this and see what happens. I know there's no standard protocol treatment regimen but come on KP, the patient has no family history, really healthy, no meds, no comorbidities and was only 53 with 16.2 psa, pni, svi, epe and tertiary 5 margin at the bladder neck. Treat the pathology not the one size fits all bandaid approach! Kaisers standard approach is "Well there's no data to support.........that has a different outcome". But 100% data that shows doingthe same thing over and over again, expecting a different result........insanity! I need to get out of Kaiser.
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Failed Docetaxel, just like everything else.
No Longer Undetectable
Newly diagnosed Prostate Cancer
Come to end of treatment line after R223. Nothing else available. 
Continuing intermittent ADT? or more?
