18 months after RALP and aRT, my PSA went from <0.1 to 0.1 on 8/20/2019, then to 0.3 on 11/7/2019. The PSADT works out to 1.64 months.
My question to you guys with more knowledge and experience is, what is next for me?
I have an appointment with my urologist on 11/22/2019.
Thanks in advance
Since you already had salvage radiation you can just wait for the PSA to rise to 2.0 or more and then start with ADT. renalandurologynews.com/hom...
Then, if you want to radiate your metastases you could get a CT/bone scan, Axumin scan or PSMA PET/CT to locate these.
Sounds like my situation exactly.
Did your SRT include the pelvic LNs? Next is an Axumin scan and ADT.
I suggest you meet with a medical oncologist.
Thanks Allen, at surgery they removed a left and a right Lymph node, at radiation they just radiated the prostate fossa.
There may be an advantage to salvage lymph node radiation for you - especially if any are large enough to be identified on an Axumin scan. Recent studies using PSMA-PET scans in recurrent men are showing that pelvic lymph node-only recurrence is higher than had previously been suspected. Considering your rapid doubling time, adjuvant long term ADT will be necessary, as in the Touijer study (below):
pcnrv.blogspot.com/2017/12/...
I suggest you talk to a radiation oncologist - perhaps a different one. (I don't understand why your previous SRT was prostate fossa-only, if it was already known that cancer had invaded your pelvic lymph nodes.)
Sorry, I was t3bN0M0 in my pathology, no nodes involved, but virtually everything else was.
I consider removing just two lymph nodes when there is a Gleason 9 as a mistake. In Europe they usually remove twelve or fifteen lymph nodes for staging.
With my G9 (4+5) they removed 63LNs ( 30 LNS from left) 33 from right. No beyond capsule invasion, yet I had BCR after 15 months. SRT to prostate bed with 6 monthly Firmagon. They said pelvic LNS unlikely since PET scan at 0.11 was negative. I just finished SRT and if got recurrence again and if PET shows positive pelvic LNs only then SRT to the pelvic area (more serious long term effects expected with pelvic SRT)
Ralph, I do not know what PET scan you got, but I think a PSMA PET/CT would be the right thing to do. They removed so many lymph nodes in the pelvis that it may well be that the there are mets outside the pelvis now. So a PSMA PET/CT could avoid a futile radiation to the pelvic area.
Thank you for your advice. I will ask my MO about changing my coming Auxumin PET scan to more precise one (PSMA PET/CT).
After 6 injections of Firmagon and PSA down from 0.11 to < 0.008 I believe that I need to wait and see when it will increase to a limit that these advanced PET scans can detect LN or bone metastasis.
Any ideas regarding the PSA readings that should trigger the consideration of PSMA PET/CT?
The PSMA PET/CT does depend on the PSMA expression, this is not directly linked to the PSA value. When you start ADT, the PSMA expression will often go up and then slowly go down after several months, but by far not as much as the PSA value. I had a PSMA PET/CT after six months of Firmagon and it showed the same mets as before the ADT had started. So it depends more on the PSA value you had before starting ADT and not so much on the PSA value you have while on ADT. As I posted in this thread below, I recommend to get a PSMA PET/CT at a PSA value above 1.0 ng/ml without ADT.
I doubt that your MO will arrange for a PSMA PET/CT. You can e.g. get it at UCSF and UCLA. Here are discussions about that:
healthunlocked.com/advanced...
I had a Gleason 9 in Dec 2009, Psa 6 at diagnosis at age 62. In April 2010 the open RP showed PG could not be removed due to too much Pca outside capsule, and Psa was 8. But they took a number of biopsy samples including 2 nearby lymph nodes most likely to get mets, and all were negative. I always worried that if they removed lymph nodes, then Pca could move into an organ without being opposed by a lymph node.
Anyway, It seems I was lucky because Pca has not moved into any organ, although it did go to bones and many other lymph nodes.
I had initial treatment of 70 Grey EBRT + 2 years of ADT in late 2010, which still continues. I also had 31Grey of IMRT as additional RT to PG in 2016. But by then I'd had my first PsMa scan that showed increased Pca activity in PG and found two mets in upper thorax next to oesophagus.
I also had Cosadex added to ADT. 6 months later the Cosadex failed so I began Zytiga + ADT, and that lasted 8 months and another PsMa scan when Psa was an ideal 5 for a good image.
I had numerous bone mets and lymph nodes. So the add on drugs added to ADT didn't stop my Pca growing, they just stopped Psa being as high as might have been. Might have slowed Pca growth. So I tried chemo, and Psa went from 12 before to 50 after 5 shots and another PsMa scan showed things getting worse.
I quit chemo in October 2018, began Lu177 in November 2018. But although I quit chemo, Psa went down to 25 before I began Lu177, so chemo did something, but not much. After 3rd shot of Lu177 last March, Psa was going down and the slight bone pain I had was easing to negligible. I began taking Xtandi, thought to help action of Lu177.
After 4th Lu177 last May my Psa was down more. Then we all waited 2 months and I had another PsMa scan that showed I had nothing to worry about with bone mets healing and no lymph node or organ activity could be seen. I have continued with Xtandi, and last week Psa was 0.32 after a steady decline, and docs are well pleased. I feel very well, and am able to cycle over 230km a week at good speed at age 72. It is thought that chemo will make Pca respond again to Zytiga or Xtandi, ie, these will again act to slow down the Pca. But a research doc here told me Xtandi assisted the action of Lu177. She is conducting a trial to confirm what she has seen often in clinical practice with patients getting Lu177.
Maybe she is right.
Anyway, I have my Pca under fairly good control now so my QOL is very good, and as good as I might ever possibly hope for at age 72, and despite the ADT for long term and its supposed side effects.
Last time I cycled with a group of about 20, with 1/2 my age was in winter 2017, after getting both knee joints replaced because I had been born with joints that were never going to last well. Those men near my age could not keep up to me; these have been keen cyclists for years, so I proved to everyone ADT can only reduce athletic performance maybe sightly.
In that group there were several female cyclists between 22 and 55, and none could keep up over an 80km ride.
But one 22yo was very close behind me after 80km, and of course she would have had a tiny amount of testosterone. But that was in mid 2017 before I had chemo. So there I was, at 70, a thoroughly castrated man able to cycle about as fast as a beautiful fit young lady of 22.
But as that year moved to summer, I was on Zytiga, and it gave me heart rate bothers on hot days, so I quit the group who started at 8am. I began at 6am, and added potassium from spinach and mushrooms got Zytiga side effects low enough to cycle 80km at flat out speed.
I have often overtaken groups of women on rides around town, and many men, but occasionally I am overtaken by the elite cyclists of either sex who whisk past me at the kind of speed I had at 40, when I averaged 30kph everywhere I went. I can only manage 22kph now.
In last July I added 20Grey EBRT to 2 mets in pelvis and femur that were thought to be reluctant to respond to Lu177. They were wrongly blamed for a sore right hip joint. But soreness was not in joint and was due to muscle problem after doing paving working at home last March. But that RT tended to make the muscle and tenon trouble very slow to heal, because my pelvic area had had a lot of previous EBRT and IMRT. So I'd quit cycling over winter for 3 months to let things rest and heal. Then I restated cycling in late August, I'd put on 2 Kg, and was very slow, but no hip pain that stopped me, although there was soreness. Another doc had real good look at MRI and Xrays and told to keep cycling, and I did not need a hip joint. So now, I am down 3 Kg, getting faster on bike, able to ride 80km+ again.
I found the side effects of last year's chemo were lingering, and worse because of resting over winter. Well, my legs have much more function because I have returned to regular long distance cycling. My efforts cycling up hills is reluctant to improve though. But I am happy with my best efforts and have some way to go before reaching peak possible athletic performance for my age.
I have not noticed any side effects from Xtandi.
My Pca is at least gone for awhile, and no more frequent appointments with specialists. If Lu177 had not been available I might have been in palliative care right now. I watched how PsMa scans became available in Australia in 2015 and how Lu177 became available in Perth in same year, and thought then I might like to get that treatment. By the time I talked to doc about doing the Lu177, he'd started another clinic in Sydney over 18 months before last November, and he'd treated 700 Pca patients with70% good outcome, a much better result than chemo could have given. But I had to fail chemo before getting Lu177, because here the Lu177 is still not fully approved. Perth was 3,000km away, Sydney only 300km away from Canberra where I live. I was lucky that the special medicine I wanted came closer.
In Australia, if patients fail with chemo, the law says they are free to get whatever is available that has not got full approval yet, but which obviously offers a better chance. My oncologist told me chemo would not work, and I knew it would not, and sure enough we were both right and he had no hesitation to refer me to the Lu177 therapy. No dithering around. Meanwhile, there is a lot more research going on in Australia with targeted radiation such as Lu177, and Ac225, and combining these things with other chemicals such as Xtandi, or immune therapy or other things to make Lu177 work better and to try to find out why 30% of men get only a partial benefit from Lu177 because they have Pca that has mutated so it does not attract Lu177 when it is given. It appears I do not have such mutations, or if I do, then they are very slow to becoming a threat. In one research hospital in Melbourne, there's a trial for Lu177 used as initial therapy, not end stage therapy as has been most common. I would have benefitted hugely from this in 2009.
It is possible I have had Pca mutations and the chemo eliminated them, but because I have had so many agents used to treat my Pca, its impossible to describe the full bio-chemical history of my Pca because no study has been done.
Its another very nice cool spring day here. But elsewhere in Australia, many bushfires are raging, a few have died, a number injured, and many properties destroyed in country regions away from towns or cities. People who built dwellings in or near bushland have suffered badly.
Most had nowhere near enough $$$ to have made their house fire proof. There's an ugly political fight going on over climate change causing the fires and lasting drought.
Nature seems to feel we have kicked her badly, so she's kicking back, and is only just getting started. But where I am in suburbia, any wild fire is unlikely to burn my house, there's no risk of flood, hurricane, or tornado. In 1973, I might have made a good choice of small city to settle down in.
I might live longer than I thought possible for many years, and live long enough for continuing research to develop more treatments for
whatever goes awry with me as I get deeper into old age.
Its so much better being 72 in 2019 than had I been 52 in 1019.
Thankyou World, I feel grateful,
Patrick Turner.
Is this Dr. Emmett who conducts the Xtandi trial? I took Bicalutamide before the Lu177 treatment and my impression is that it helped to increase the PSMA expression and thus the result of the treatment.
Indeed it was Professor Louise Emmett. Talking to her was like talking to Professor Einstein at age 45, but a female version, somewhat more charming than the male one 
Anyway, she's been studying bio molecules for years and years. I met her on No 3 infusion where she was filling in time between research times doing clinical work looking after nuclide patients getting Lu177 at Warratah Hospital at Hurstville in Sydney, administration by Genesis Care for Theranostics Australia.
She had noticed how patients got a better response with Lu177 if they were taking either enzalutamide, Xtandi or abiraterone, Zytiga.
Now I had already taken Zytiga until it failed before chemo, and Medicare rules didn't permit me to switch straight over to Xtandi, so I had to proceed straight to chemo. OK, so chemo failed too.
But chemo is said to have the effect of making Pca susceptible again to wanted effects of Ztiga or Xtandi. OK, so I begin Lu177, and she recommended I have Xtandi after No 3 shot. Its was just a co-incidence I was one of her 4 patients for the day, and had I not met her, I would not be on Xtandi because other docs are scared they would get into trouble for using Xtandi after Zytiga. So there were a few emails between her and my onco who had to learn fast about what she was up to and how much better that Patrick Turner bloke might do if he had Xtandi added to his diet while being shot up with Lu177. The Lu177 showed it was working before the Xtandi was given, but it sure worked better for No 4 shot, and ever since, and nobody has gotten into any trouble yet for breaking Medicare regulatory rules about expensive cancer drugs. My Xtandi is free from Medicare, and I am continuing with it.
While talking with our dear Louise, she said funding for her trial with Lu177 and Lu177 at St Vincents Hospital in Sydney was about to be announced, and it was, next day.
She said she had a son who cycled a lot, 500km a week, not unusual for any young bloke who wants to win races, and I suggested she and I might go for a ride together some time, and she said she'd never keep up, and I said I'd slow down, and head to a nearest café to just talk about stuff, and so she chuckled over this idea. At that time a right hip was keeping me off the bike, and she said "now I want you back on that bike asap" and I just had visions of a wheelchair.
But the hip trouble seems to have eased, and I am back into good condition, and when I finish this email I'll be straight out onto bike for 30km across town for a coffee.
So why did my hip come good? was it a faith healer I met here 3 months ago who invited the Lord to heal me? Well, Hoo Noze? I don't much believe in miracles, or in the Lord, but Jesus sure did live, and was basically a very excellent good guy we can learn from, and I found the faith healer lady was a heck of a nice young lady of 40 so I accepted her goodwill when she offered a prayer with a hand on my hip and other hand on heart.
It was very unusual that I could have ever met this delightful person who happened to be travelling around the world, and from Canada.
She didn't mind my faith doubts. I had only the attitude of goodwill toward her.
So there you are, there's good in this crazy world.
Psa = 0.32, and I am cycling again well, and its no wonder I am fairly happy.
Its going to be a real nice spring day here.
Patrick Turner.
I think here is a report of this trial:
jnm.snmjournals.org/content...
Hi Good Product 24,
I went to that URL and read the article. Louise Emmett is first name listed in what seems to be a team, and its at St Vincent's in Sydney, so that's the trial Professor Emmett mentioned.
Unfortunately, I don't understand a word of the "report." But from what Our Dear Louise told me, its best that those getting Lu177 be taking bicalutamide, enzalutamide, abiraterone for the time they are getting Lu177. But this may not make sense to men who have been on these drugs for long enough for them to cease working while ADT remains continuous. But OD Louise said to me that chemo re-sensitizes Pca to the add on drugs. More that that though, it makes SUV, or specific uptake value of Lu177 higher, so when the same amount of Lu177 given to a patient, more of that is taken up by Pca, leading to higher amount of Pca death, just what we all want. After a few shots of Lu177, there can come a time when the follow up PsMa Ga68 scan will show SUV is so low its pointless giving any more, and that's because the Pca is mainly dead from previous shots; there's hardly any live Pca cells left to be killed, and what may be living after Lu177 may be so damaged they cannot replicate and grow and the presence of enzalutamide helps to ruin the cancer's ability to grow, so maybe that's why my Psa has slowly but surely gone down to 0.32, or 1.28% of what it was when I began getting Lu177 last November.
The last time my Psa was 0.32 was way back in about 2014, when I had
zero symptoms of Pca, when ADT was working well to hide the ticking bomb of Pca that lurked within me.
Meanwhile, I'm taking it easy, back from 73km cycle ride, quite windy, but I now have 156km so far this week, so not much to do on Sunday to get the 220km average. Now concentrating on protein rich food with salads, and low carb intake. This way I burn fat, build muscles - which they don't like to do because I am a 72yo testosterone free zone. Got lawn mowing tomorrow, finished the hedge cutting yesterday.
Time for morning cycling when its cool in mornings, gardening will be done so none is needed over hot coming months which I think will be red hot with many days over 40C. Time for wet Tshirts, fans, salads, and staying in touch with friends.
Patrick Turner.
OIC. Then this reference is more relevant for you:
pcnrv.blogspot.com/2018/10/...
But the Axumin scan may be more informative.
I saw this in your blog, and since 5 years PSA recurrence difference was just 6% I decided PBRT only:
《5-year freedom from progression (biochemical or clinical) was 89% for sWPRT+STADT, 83% for PBRT+STADT》
Thanks TA for helping me making my decision, and as any other Gleason score > 8 club member, I am preparing my self for the next recurrence which may happen anytime before the coming 5 years (or may be much less)
I will have genetic test this month.
With a PSA of 0.3 you should consider in getting a Ga 68 PSMA PET/CT or a 18 F DCFPyl PET/CT done. These PET/CTs have a higher detection rate than the Axumin scan at that PSA.
If you have lymph node metastases in the pelvis and you do not have distant metastases, you could consult with at radiation oncologist to determine if it is possible to irradiate them. You could also consider to get treated with Lu 177 PSMA abroad, if financially affordable.
There are clinical trial for the PSMA PET/CTs:
clinicaltrials.gov/ct2/resu...
clinicaltrials.gov/ct2/resu...
I would wait for the PSA value to rise above 1.0 before getting a PSMA PET/CT. This will usually show more of the existing metastases:
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
The detection rate at a PSA of 0.3 is 42%.
urotoday.com/conference-hig...
This differs a bit depending on the study you read. In the study I cited, which was done at UCSF and UCLA, the detection rate was 84% when the PSA value got above 1.0. Considering the cost of the PSMA PET/CT I would wait until I get to that level so I will be able to locate 84% of the existing mets.
What maximum size of met can be detected on a FDG PET-CT scan ??
Is a FDG PET-CT scan superior to a GA-68 scan/ 18F DCFPyl scan ??
All three are available in Bombay & the cost is more or less the same
for all three.
Thank you for any reply.
You probably mean the smallest size of a met. I do not know for a FDG PET-CT, for a PSMA PET/CT it is 3 mm, older systems had 6 mm.
In general the PSMA PET/CT is better than an FDG PET-CT, however, if you have PSMA negative tumors you need the FDG PET-CT to locate these. But if you locate these, you cannot treat them with a Lu177 treatment.
So PSMA PET/CT scan is superior and better then Auxumin PET scan?
Thank you, GP24.
Yes, you are right. I meant the "smallest size of a met".
ADT has screwed my brain badly 
At least 15/20% loss in cognitive ability.
Thank you for the rest of the info as well.
You have now become numero uno for me on this board.
Your info is succinct & multi-dimensional usually. I love your exactitude.
Thank you again, GP24, for everything.
At this point I think the urologist has done his job. He didn't succeed, but with an initial PSA below 0.1 for a Gleason 5+4 cancer, he made a great effort. He can prescribe androgen deprivation for you but I think you should consult with a doctor who specializes in drug treatments for prostate cancer, rather than one who specializes in surgery.
Here is a link to the National Cancer Institute's list of Designated Cancer Centers - place they think are the leaders in cancer research and treatment:
cancer.gov/research/nci-rol...
You may also be able to find someone good by posting information about what areas of the country are best for you.
Best of luck.
Alan
One more thing I'd like to add.
It looks like you are in a terrible position and doomed to die of prostate cancer, and 20 years ago with your disease characteristics that would likely have been true. Today however, and even more so in the years to come, there are a significant number of effective treatments and, although none of them yet are definitive cures, the number of new treatments under development is large and growing. Your life is changing but it isn't necessarily ending. Work on diet and exercise, stay as healthy as you can (which slows cancer growth as well as makes you feel better), and hook up with a first rate medical oncologist. Don't let yourself get too anxious and depressed. You still have a future and still have opportunities to find much satisfaction in life.
Best of luck to you.
Alan
Wonderful advice .
Thanks for your words of encouragement.
Hi there,
UCLA was the easiest to get the PSMA PET scan for me. Costs around 2650.
If you can wait till the PSA gets to be 1 or slightly above your chances of pinpointing the location of the Mets is close to 90%
If there are 5 or less Mets these can be a ablated by SABR radiation. If you have a good radiation oncologist ask if he will do this for you then you can name him as your doctor who will receive the results from UCLA.
It’s very unlikely that you will have more than a few Mets may be only one with that low of PSA.
It takes about a month to set up the UCLA scan so you may want to time it just right with your PSA.
There may or may not be micro Mets which may not show up on any scan so serious consideration to a systemic treatment like Docetaxal be worth considering
If you go the route of ADT the PSA will be suppressed nearly 100% of the time yet it’s not curative. And you loose an important parameter to measure the response to other treatments.
The landscape for metastatic Prostate Ca treatment is changing rather rapidly so there is hope for longevity esp for Oligometastatic state.
The problem is not all physicians have caught up with this change as these have not yet become “standard protocols “. Hope you find the right physician.
Best wishes,
Silverlight
For those confused by "SABR", SABR and SBRT are two names for the same thing.
Chris,
You might consider transdermal estradiol (tE2)...it has been a 'wonder' hormone therapy for some of us. Richard Wassersug, PhD is the tE2 guru and has been using it for 16 years. He encouraged me to try it and I have been thrilled with the results.
My best,
Ron
I have one thing to add to the discussion and that is that the doubling time may change. This happened to my husband (4+5) who started bcr with 3 month doubling but then it dropped to now something like 12 month or more. Best wishes!
Oncology consult is next. Good luck. This may well be me too, in the future. One 12 months I am in the clear.
My Oncologist at Sloan Kettering told my to only be concerned with doubling time above the count of 3.0ng if that helps.
The best thing I ever did for myself was to get educated on my disease. The second best thing I ever did for myself is to stop reading for awhile, forget about it and go on living my life.
to 5_plus_4.... take 2 and hit to left...........
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 11/12/2019 7:09 PM EST
Consider getting genetic testing, which will guide you for possible next steps. I used color.com which is a simple saliva test. I am BRCA2+ and am successfully being treated with Olaparib, a PARP inhibitor. Precision medicine at its best.
Plan for my husband's biochemical recurrence
Update on My Lymph Node Metastatic Prostate Cancer
Had 2nd Lupron on my 2nd ADT go-around, added CBD oil for a month
PSA rising. The trend is not my friend.
MY PSA
