I was finally able to get a long awaited PSMA scan. The radiopharmaceutical used was F-18 labeled rhPSMA-7.3. There was no evidence of residual/recurrent tumor, although over the last 5 years my PSA has gone from .04 to .41.
It seems my best option now is to simply start salvage radiation. Given the slow rise in my PSA value, the radiation oncologist is considering the possibility of not including ADT at the same time. I’ve explained how badly I reacted to ADT 4 years ago when I received a single Firmagon shot, which is why this is a consideration.
I’ve been researching to try and find out exactly what to expect during my first simulation or preparation, and the following 45 days of radiation. Should I expect to be able to continue with normal daily activities? Should I prepare for a period of being too exhausted to do too much of anything? Just curious if someone can explain what I should expect.
Thanks!
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billd9946
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That is written with primary radiation in mind. With salvage radiation, urinary side effects may also include incontinence. Sexual side effects are sometimes more with salvage - good idea to take daily Cialis or Viagra from the start. Because you are LN+, they will treat your entire pelvic area. Side effects of pelvic radiation may be lower if you are a "bear." The extra fat protects the bowels.
For most guys, side effects are not severe enough to interfere with work of other activities. Fatigueincreases with the number of treatments - it may occur towards the end. To prevent it, exercise a lot! This is not the time to take it easy. I doubled my cardiovascular workouts and had no fatigue whatever. It also helps radiation work better:
Because of the pandemic, and to prevent fatigue, it is a good idea, especially now to talk to your RO about a shortened course of radiation, cutting your treatment time in half:
Thanks, Allen. One question- are you familiar with peripheral hormone blockade therapy? My medical oncologist has mentioned this as a replacement for full ADT, but only after 6 or more months of ADT, and after SR has been completed. My understanding is that peripheral hormone blockade therapy does not deplete testosterone, yet it prevents it from feeding the prostate cancer cells.
Thank you again for the support documents. I am facing SRT in 2 months after starting Firmagin this week. I was trying to lose weight (5'10" and 195) due to anticipated ADT weight gain...now 2nd thoughts given your bear comment. So much info...so many decisions
Hi. When I had my rp, my specialist told me that about a third of men (Of my group) have a post rp rise in psa without any cancer recurrence. Given your PSMa shows no cancer, might be worth gettin* a second opinion before zapping. Hope this helps.
Where did you get a PSMA scan it is only available in trials in the US and as far as I can tell all trials are closed. I have been wanting to get this scan but can not find a way to get it other than going to another country and paying the full cost.
If your PSMA scan is negative why are you doing radiation?
Hi Spencoid2. I had the same issue then discovered through my radiation oncologist that Chesapeake Urology in Baltimore was sponsoring a trial. I contacted them myself, was accepted, and within a week had the scan, I also discovered during my research that UCLA Medical Center offers the scan, but there is an out of pocket cost associated. Other trials are going on at NIH and Memorial Sloan Kettering, but I could not get into either of these for one reason or another.
My PSA level is fairly low at .41 currently. I’ve read that at this low level, the PSMA scan will only detect cancer in approximately 30% of patients. The growth has to be a certain size in order to be detected. My medical oncologist and radiation oncologist have explained to me that even though the scan shows nothing, there could be microscopic cancer in the prostate bed, or maybe pelvic lymph nodes. It is also possible there is cancer elsewhere, but still undetectable. If it’s still contained in the pelvic area, radiation therapy could be curative. It’s a shot in the dark, but seems statistically worth it. If the scan had shown cancer had metastasized outside the pelvic region, salvage radiation would not be a viable option,
Thanks for the info. I wrote to the coordinators of the UCLA study and it seems that i can get a scan in 2 to 3 weeks at a cost of under $3000. I will call my oncologist tomorrow and also on the results of the recent biopsy decide whether it will be useful to get the scan. I can get just a single scan and can fly there from the local airport with minimal effort. The location is 10 miles from the airport. Not much more effort than going to SF and UCLA answered on a Sunday within 8 hours of my inquiry.
I just completed week number 5 (of 8) of salvage radiation. I was nervous about it prior to starting ... but it has been super easy so far (I'm hoping the last 3 weeks are as easy). It has not impacted my daily activities in any way. So far ... no regrets for me!
Hello JP! I’m probably not the best person to ask, but I’ll tell you... my testosterone was depleted like immediately, so sex drive totally out the window. I began having hot flashes pretty much right away, and they were frequent. I purchased a hand sized fan that plugs into a USB port and kept it handy, and it really did help. The worst of it was that the shot made me so depressed. I battle anyway with depression, but this shot really exacerbated the issue. I only had 1 shot to prepare for the start of salvage radiation, but decided to hold off. Now 4 years later with a rising PSA, I’m looking at starting all over again. A single shot depleted me of all testosterone for 8 long months. I wish now that I had just done the salvage radiation, given how long my testosterone was gone. All this said, you might tolerate the shot way better than I did. Everyone is different and sometimes we just gotta do what we gotta do. Hang in there and I wish you the absolute best! Try exercising as much as you can. Testosterone depletion does affect your body composition, so exercise will help physically, as well as emotionally. Let me know if you have any other questions.
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