Hi. In early 2013 I travelled to South Korea to have 28 fractions of PBT. My GS was 3+4 = 7 with a PSA around 9. Besides having a fantastic three months in Seoul, the Korean National Cancer Centre were fantastic. So much so they inspired me to write a book on PCa and my experiences. I followed this up with two further editions of 'An ABC of Prostate cancer Today'.
Every year I have had a PSA test just to check that the PCa is still in check.
The last three figures were:
Sept 19: 0.12
Oct 20: 0.22
Feb 21: 0.38
The NCC in Seoul suggest that I take no action other than to have quarterly PSA test. If and when it gets to 0.50, they will provide input on remedial intervention.
My urologist concurs with this action.
Comments welcome.
Cheers
Alan
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AlanLawrenson
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Biochemical recurrence would be 2.12 for you. The reason they set it so high is they found that other definitions (e.g., 3 consecutive rises, psa=1.0. etc.) vastly overestimated clinical recurrence and caused a lot of unnecessary procedures and anxiety. If you can manage your anxiety, just have quarterly or biannual PSA tests until your PSA reaches at least 2.0. At that point, you can investigate further. Remember, you have a functioning prostate that still puts out benign PSA.
Hi Alan, I think you are quite lucky to get the results you got with PBT. Getting Psa 9 in 2013 to 0.38 at 7 years later and its similar to where a man has RP then finds Psa recurrence years later and then a pile of EBRT is needed to stop Pca increasing at PG. But this assumes the increase of Psa after initial therapy is at PG, and that may not be the case and Psa rise could be from mets, so when Psa rises a bit more to about 2, I suggest you get PsMa Ga68 scan to see where Pca is active. You do not say you have had ADT so I guess you have not needed it, but that may slow down Pca growth for several years. At 62yo and in 2009, I had Gleason score 9 with Psa at 6, and Pca at PG was found during RP to be non-operable, so I had EBRT and 70Grey EBRT which hardly did anything at all, so I have had a long slow fight with many things costing a vast amount of time and money.
Psa is now about 100, and I begin Ra223 next Friday. I hope to zap my bone mets before I start getting bone fractures.
Patrick. Thanks for response. I had ADT for 6 months whilst waiting to go to Korea in 2012. Not too keen on starting it just yet. The Korean NCC are confident that if and when I get to 0.50 PSA, they will have suitable solution for me.Good to hear from TA. Will do another PSA in July 21. I think a Ga68 PSMA PET scan would be appropriate thereafter. Detection limits getting better, but unlikely to see micro PCa.
Hi Alan, I'd be having Psa tests each 3 months, not leaving next one to July. Just what is being offered by NCC if Psa > -0.5?
Anyway, if Psa goes to about 2.0, then it becomes possible for PsMa scan to see mets bigger than 2mm dia. And PsMa scans depend on whether your Pca makes PsMa. If it does not, PsMa scan would be useless and you'd need FDG PET scan.
I had first PsMa scan 2016 at Psa 5.6, and it showed first 2 mets in lymph nodes near esophagus, only 2mm dia. I had salvation stereotactic RT, 31Grey, to PG and to the 2 mets at Epworth after the 2016 scan for what was thought to be Pca progression at PG.
Ordinary CT scans would have seen nothing.
I began Cosadex at same time. I spent net amount usd $11,000 and I got 6 months Psa suppression. But a PsMs scan in 2017 after Psa went back up to 6 showed many more lymph node and some bone mets. I began Zytiga that gave 8months Psa suppression but more mets were seen in 2018 and Psa went to 12 so I had chemo which did SFA after 5 shots so I went to Lu177 in Nov 2018 with Psa at 25, with many mets, some as big as a pea.
I realized just how useless Cosadex and Zytiga and salvation RT could be, but I had to get through processional protocol of these drugs and then fail chemo to be able to have Lu177.
The Lu177 did good to get all soft tissue mets down to being invisible in PsMa and FDG scans, but after 6 doses, it was working to get remaining active bone mets zapped, but follow-up scan showed a bunch of new bone mets that made very small amount of PsMa so more Lu177 was seen as a waste of time and dough and Theranostics Australia would not give more Lu177.
So in months since last Lu177 shot in October 2020, Psa has gone from 7 to maybe 100 now, but I begin Ra223 on Friday, from same providers at same hospital at Hurstville in Sydney, and for same price per dose as Lu177.
It may work well, but nobody really knows yet until we see blood test results in about a month's time. And doc is worried about my bone marrow function. We all have a good reserve for ordinary needs, but past chemo and Lu177 may have reduced it, and Ra223 may reduce it more, so if I get through enough Ra223 doses to zap all bone mets it will seem like a miracle. Maybe not many men can make it through 6 doses Lu177 then 6 doses Ra223. I am very fit for my age, but I sure ain't Superman.
I've cycled 200km a week through all this Pca progression and failing treatments.
That kept me fit, and reduced side effects to almost zero, and I would not know I had Pca if I had not had scans and doctors agreeing to let me have Ra223. On some days I feel I am on the way out. So what.
Patrick. Hope the Ra therapy goes well. Still think compassionate Veyonda from Noxopharm, might offer so assistance. See LuPin and DAART trial results.
I'll get next PSA test at mid-year and then decide on future therapy after getting Korean NCC input.
This is interim results of use of Veyonda with Lu177.
They claim it increased OS to 17 months which was more than what many patients could expect.
For my 5th and 6th Lu177 doses last year in July and October 2020, I was given 20 Veyonda suppositories which I began 2 days before Lu177 dose and for 8 days after, to boost PsMa expression. It was given free to me on compassionate grounds, but also so the makers have more data about how efficacious it is. I could not see any mention of any benefit of taking Veyonda with Ra223, which does not depend on PsMa expression to be able to work.
I have no idea if Veyonda gave me any benefit. I have small bone mets with very low PsMa expression, and Ra223 is good for small bone mets.
Ra223 goes to where there is molecular vacancies within bones for calcium, and there are lots of Ca vacancies in bone mets, so once Ra22 takes up residency at these vacancies, it blasts the Pca DNA to bits with alpha particles, for the time it remains radioactive. Its half life is 11 days, so a lot would be going on for about a month before its action fades to nothing.
I cannot know if I am getting anywhere until I have next full blood tests on about 20 March. But I have appointment with my onco next week, so I have a Psa test then, plus a couple of other things, so perhaps we may see Psa beginning to rise at slower rate, or flatten, but I can't predict the results at all.
I'm now doing yard work around house instead of cycling because being on my feet stimulates bone density increase so that should assist effectiveness of Ra223.
Cycling or swimming does not increase bone density, but can reduce it, so bones lose Ca and don't uptake as much.
Unlike so many men my age, I feel I must not sit around and do SFA .
I think at your stage, I suggest PsMa Ga68 scan. Peter Mac says that are The Best type of scan if Psa > 2.0, but they also say FDG PET is good, all better than any plain old routine CT scan.
Looks like you are BCR. So sorry but welcome to the club, Alan. Time to get a PSMA PET scan and see where it is if it can be visualized. If there is no activity outside of the pelvis then you should be looking into salvage RT (not proton beam) that includes extended pelvic LN fields.
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