I have been reading on this forum for the past 2 month and learned so much from you, thank you! I am impressed and grateful about all this knowledge and sharing here.
Here is my husband's story (64years):
Dx in June 2019 after pain in back and right leg for more than a year and error in interpretation of MRI scan then. At diagnosis PSA was 317 and the biopsy resulted in gleason score 7 ( 8 cores 4+3 and 4 cores 3+4) with multiple foci of perineural invasion. MRI, Ct and bone scintigraphy was performed and showed multiple cancer lesions on spine and pelvis. There was also a 3 mm nodular density on the right lower lung area and a small non-dependent soft tissue density in the region of the prostate gland along the anterior wall of the rectum. No pelvic or retroperitoneal lymphadenopathy identified. A PET/Ct scan follows next month.
PSA: 3 July 88.0 ng/mL, 10 July 79.1 ng/mL, July 24 107.0 ng/mL,
7 August 54.2 ng/mL , 4 September 41.0 ng/mL
Treatment so far: Casodex, Firmagon and Xgeva. Then the 3-month lupron depot. He wanted to stop Xgeva after 2 administrations because of developing tingling in his lower jaw. The lupron also causes lots of fatigue.
The local oncologist recommends now in addition to ADT either docetaxel or Xtandi and the research oncologist at Moffitt center recommends docetaxel or Zytega. He recommends Zytega because of CHAARTED and LATITUDE results have been proven for poor risk/high volume disease and Xtandi trial results in ARCHES have not been fully reported.
My husband does not want to use docetaxel at this time so we need to decide on either Zytega or Xtandi especially in foresight of a Ga 68 PSMA PET/CT scan and Lutetium 177 or Acetium 225 treatment in Germany.
Which one would be a better primer for PSMA expression for the Gallium 68 scan and how long would he have to take it before best results? I also wonder if Xtandi would cause even more fatigue compared to Zytega?
All the best to all the fighting brothers and sisters out there!
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The German doctors (at least the doctors at the clinic I am talking to) recommend Xtandi (enzalutamide) as this drug gives better expression of PSMA proteins. If you are not on Xtandi when you go over, they will put you on Xtandi. I have been on this drug for over two years with very few side effects other than fatigue. Good luck!
I leave for Homburg on Sunday morning. I am not sure if the other clinics in Germany require Xtandi but the medical team at Universitats Klinikum des Saarlandes (UKS) definitely do. I am curious as to how you knew I was going to Homburg?
I am still on Xtandi. I have been on it for two years. In 2017 I had to make a choice between Zytiga (abiraterone with prednisone) and Xtandi (enzalutamide). I chose Xtandi.
Oh for goodness sake! That’s hilarious! It truly is a small world. Your husband is a great guy. I really enjoyed hanging out with him in Los Angeles. I promised Charlie I would write him when I get back from Germany.
Hi RyderLake! Shanti here from the PCRI conference :-). Just want to wish you a safe and successful trip. I hope you respond exceptionally well to treatment and I will be thinking of you and wishing the best.
Thank you so much. We are in Montreal right now waiting for our plane to Frankfurt. Optimism mixed with apprehension. Thanks for thinking about me! I will let you know how it went when we get home.
(1) Initial PSA 317 can look scary but high PSA is not necessarily a bad sign. It tells us that the cancer cells are not badly deformed as they are still capable of releasing PSA. (think of PSA as tears of prostate crying for help) The fact that his biopsy Gleason Grade is only 7 (3+4 and 4-3 ) verifies that the cancer cells are well differentiated ...meaning they still look mostly like normal prostate cells.
As for Perineural invasion..it doesnot mean much (do not confuse it with Neuroendocrine differentiation because that is sign of aggressive PCa)
Conclusion: He most likely has Adenocarcinoma..the garden variety type of prostate cancer which 95% of PCa people have and has less aggressive low Gleason Grade.
(2) He predominantly has Bone Metastasis...again .most common type of metastasis which most people have. The 3 mm lesion on lung probably will disappear with treatment but deserve to be watched.
There are no signs of small cell cancer, neuroendocrine or ductal Cancer...all good news.
(3) So, what is the best course of action in such a case ? . The pattern of fall of his PSA is very encouraging sign..that means his current treatment with Lupron IS working....Hopefully he will reach to PSA level of 0.2 in next few months as cancer cells are dying at fast rate.
Based on great research in last few years...Lupron alone is not enough....either the chemotherapy ,Docetaxel OR Abiraterone (Zytiga) should be added. That is likely to knock his PSA even more rapidly and to very low point and this combination has promise of longer survival.
I have something close to what your husband have...Adenocarcinoma with Gleason Grade (3+4) and many bone mets (No organ /visceral mets)
I was in dilemma just like your husband ...I did not like to go for Docetexil and chose to go for Lupron and Zytiga plus prednisolone. This was 4 months ago. My PSA fell like a rock from 830 to 1.5 in just 4 months...and I guess it will go below 0.2 in next 2 to 3 months.
Tiredness and some dizziness are the only side effects I have.
I do eat only plant based food with home made fat free yogurt. I eat either broccoli/cauliflower or cabbage every single day. These are like medicinal veggies for PCa.
I drink Green tea two times a day. It may helps to slow cancer progression.
I also take food supplements.. every day. .Curcumin, Ginger, grape seed extract, garlic , berberine, red yeast rice etc.
My MO thought that there is no point in getting a PSMA scan at this point as all tumor markers are pointing in right direction and there are no symptoms.
However, scan will be done after total 8 months of treatment to see if any cancer left or all of it is dead.
If Lupron and Zytiga fails in next few years, my MO will either go for Xtendi or provenge.
"My husband does not want to use docetaxel at this time so we need to decide on either Zytega or Xtandi..."
Why? Docetaxel is usually given early in the treatments, then take Zytiga soon afterwards. I've started with ADT (Lupron) and Zytiga when diagnosed 10 months ago at GS 8 and PSA 1000+ with extensive pelvic and lower vertebral metastasis.
I took Zytiga first, because Lupron knocked down my PSA to 60 in a few months, currently its PSA <0.02! Recently started Docetaxel, too keep up with combination therapies. So to be clear, Lupron + Zytiga + Taxotere are being taken at the same time.
Long term use of any hormonal agent will depress expression of PSMA. Why does your husband not want to use docetaxel first? Interestingly, the toxicity of early-use docetaxel and Zytiga are similar in degree, although different in kind.
Standard treatment here has been to give an RP where it is possible to be done, which means the Pca is still contained within prostate capsule.
If much Pca has come outside, it means docs cannot see what they are cutting into while trying to save nerves wrapping around the PG. At age 62, in 2010, I had PG with much external Pca wrapping around PG, but no local or distant spread was found, but RP was abandoned and I got ADT with EBRT instead, and that kept Psa low until 2016 when Psa went up to 6.
In 2016 I had first PsMa scans that showed 2 small mets in chest, that's all, but then during next years the scans showed big met increase in soft tissues and bones. And in 2016, I had more IMRT to PG and Cosadex was added to ADT, then that failed in 6 months, then Zytiga failed in 8 months, so chemo was next and it failed, Psa went from 12 to 50 with countless small mets all over the joint.
Without repeated PsMa Ga68PET/CT scans, nobody could really know my real condition.
Anyway, there was enough PsMa avidity after chemo to justify Lu177 which I began in Nov last year, until 4th shot this year in May, with Xtandi started after 3rd shot this year, because doc thought chemo made my Pca responsive again to either Zytiga of Xtandi, and the Xtandi increases PsMa expression after chemo so Lu177 was more effective for the last shot. Psa before Lu177 was 25, and now is 0.4, and last and 6th PsMa scan gave a good report of my situation so no more treatment is needed for awhile.
Between 2006 and now, I cycled 140,000 km on my bicycle, so lethargy from ADT just didn't happen, and I cycled the 20km to get the chemo last year.
I was just too fit to feel tired or put weight on.
Zytiga caused heart rate bothers in hot weather, so I began 3 hour cycle rides at 6:30am in Summer.
From all I have read, use of Zytiga PLUS Xtandi should never ever be attempted because side effects are horrid, and no extra suppression of Pca occurs. Its one or the other, and if one fails, then its no use switching to the other. But chemo may make these drugs work again, even when chemo fails.
Chemo was by far **The Worst Stuff** to have to take. For 7 days after each shot, I felt terrible, but I cycled small distances on every day of each cycle and built up distance as the 3 weeks passed and I felt better.
Its now about 10 months since quitting chemo and side effects of chemo are still very present with legs feeling lethargic and weaker, and average speed on bike has dropped 2kph but the rides I am doing now are plenty to maintain some fitness rather than having none at all, with a shuffling old man's walk.
I have a low calories diet of mainly vegetables, some eggs, some fish, but not enough for weight gain that was predicted for Xtandi. Not with me, I have a firm will, and regardless of what drug I am taking, weight is entirely dependent on what I allow to go into my mouth, and I well understand the full meaning of the word "NO". I see so many overweight men around, I ain't of them. Ppl eat too much, and blame drugs for weight gain. It is also possible the Pca makes them anxious if not terrified, possibly depressed, so they eat too much.
Exercise should be doing something to force up HR by 50% for at least an hour a day, for the whole hour, 365 days a year. Or for a total of 7 hours a week. I often did twice this 5 years ago while on ADT, and I often went faster than guys my age with a "full bottle" of Testosterone.
Cycling around on quite suburban roads is my way, average speed for all rides is now 20.5kph. At 40, without any health problems I averaged about 30kph.
I have no athletic genes, was always slower than the slim men who won bike races with a higher VO2, and lower body fat%, and natural ability to get HR up to 200BPM. But I quite enjoyed long rides up to 300km in a day at 43yo. Not now, too darn wrecked by aging, chemical castration, EBRT, and chemo.
But at age 62 at diagnosis I was averaging 26kph, and up to 32kph on highways, and very few other cyclists overtook me. I was doing 150km rides at 62.
Now, I am doing enough. Resting HR < 50, waist < 95cm, BMI < 25. Docs are happy with all blood numbers. I ain't young, and all that matters is that I get out of the house, out into the sunshine, and enjoy moving around the natural landscape of the beautiful area of my city where I live. If I didn't get Lu177 last year, I might be on palliative care now.
I did have some hip trouble in middle of last winter, the Pca and some extra EBRT to 2 bone mets caused hip inflammation. It was first thought to be arthritis, a hip joint op was mentioned but seemed like it was muscle and tendon problems. I stopped cycling for 3 months, and that allowed some slow healing to happen.
But then an orthopedic surgeon advised me to get back onto bike after seeing my MRI and Xrays. So far so good. If my hip goes real bad, he will do a hip joint if my Pca remains "controlled", something that many like me must do, because they know there may never be remission. Pca is a chronic thing, not like many cancers where woe to go is a year or two.
Yesterday, I attempted a cycle up a real steep hill, heart pounding, legs on fire, and I found I didn't have a low enough gear ratio. OK, so I found my limits. I don't need to ever cycle up any long hard hill with 12%+ gradient. I stopped and found another route. Today I felt slightly tired, but no severe pains so hip surgeon was right; bone on bone in hip would have hurt like hell. The effects of radiation and chemo on one hip has affected it slightly, so as long as I keep to mainly flat roads and hills less than 5% I'll probably just get stronger. If I do SFA, I'll get weaker.
Walking is good, but cycling keeps HR high while sitting down and avoiding stress on joint cartilages.
The whole total effect of Pca with ADT and lots of drugs one after the other tend to age a man prematurely. Exercise is the only way to avoid this as much as possible and enjoy living. My balance and traffic awareness is still good.
Patrick ,I like your willpower and determination. The best part of your post is "people overeat..and then blame the medicines for being overweight" Totally agree.
I am on ADT and I have been able to keep my weight at close to ideal weight by eating a lot of veggies and fruits and walking 4 to 5 miles a day.
The comment about weight gain is just plain wrong. Of course there are some people who exercise restraint and don’t gain weight. But, the majority of people do have an increased APPETITE and because they lack the willpower of others, they gain weight. So, clearly the medications are responsible.
Let me clarify. What I think is ..if a person eats right kind of food in right amount and exercise he can beat the appetite provoking tendency of meds.
Yes- but for many people “change” is difficult. Especially for those who have not had a healthy diet and/or exercise regimen to begin with. I myself went from 135lbs to 150 from age 17-54. That’s a 15 pound increase in 37 years. Then I was diagnosed and received Lupron and put on 15 pounds in 6 weeks. My appetite became non-stop at night. And- I believe - though I may be incorrect about this- that the loss of T slows down one’s metabolism. Anyway- with sever knee issues resulting in a knee replacement 3 years ago (with a follow up in Dec. 2018, along with a severe back injury 2 years ago, resulting in back surgery and permanent weakness in my (good) left leg, exercise has not come easy for me. I still ride my bike up to 6 miles on occasion (as I did today) and I still go out and got a tennis ball around (although my mobility is pretty poor) and I even went skiing 2 of the last 3 years following my knee surgery. Those activities and a few rounds of golf and walking around my neighborhood are all that I am really up for doing. I have also improved my diet significantly since my diagnosis 7 years ago but my diet is certainly not as good as many others on this site. I
am “doing what I feel I am able to do” but I can’t rid myself of those 15 pounds, my increased stomach size and waistline , nor my manboobs. For those of you who can, more power to you.
I gave up the 6 small apples a day I ate last year. I figured I could do without the fructose. Vegies are fine, but then ppl say "Oh I eat lots of vegies" and you find that for them, that means plate fulls of potato chips soaked in fat. Hardly anyone can be fully rational about all the things they do in life, and eating, drinking, spending, consuming, gambling, mating, etc, etc, is often undertaken in a sub-optimal manner, often to please a partner or because being fully rational involves more expense for which there is no dough. My diet of mainly vegies is more expensive that getting the same number of calories from junk processed foods.
Walking 4 miles a day is 6.4km a day, about an hour if you have a good set of bones. Its harder to do that than ride 6.4km. But in an hour I'll ride about 22km, with low stress on bones and I have a few problems that do not allow me to walk, like a stuffed ankle with arthritis that came from a motorcycle prang at 19. The 1hr+ a day is good though.
When I worked in building trades, each day was equal much more than 1 hour of walking or cycling. Then my knees went kaput in 1993, so no more building, I did electronics sit down work and gained 20Kg in 12 years. After an arthroscopy in 2005 to both knees, I re-started cycling age 59, and lost 20Kg in 6 months, and its stayed off. But in 2017 I had both knees replaced, then could walk more if I needed to. And no pain. But while I could hardly walk much for about 10 years, I could cycle OK, and in week before getting both knees done I'd cycled 200km.
I took 12 before I could cycle again properly, but then I went a bit faster than other blokes my age, they wondered WTF was going on, the Zytiga gave me HR problems in hot weather, so I rode alone in early am to beat the heat. I did not need to cycle with other men.
but exactly 2 years ago, with 2 new knee joints, I could easily do 90km cycle rides, 4 hours+, but I doubt I'll ever do that again.
I would say that Xtandi affects athletic performance more than Zytiga.
Today was a perfect spring day here, 24C, and had a sandwich for lunch, then cycled about 50km. I could not avoid the hills. Av speed was about 23kph maybe, but only one guy of 45 overtook me. Last year, at 2 weeks after each chemo shot, speed came back to higher than I am seeing now. My mind says "go fast and get on with it," but body is saying no,
But none of that matters, its better I cycle rather than not cycle at all.
Soon as I'm off the bike and doing hobby stuff my mind is clear, I feel "bright eyed and bushy tailed" and sure have a few arthritis pains but not enough to stop me doing many things. They say Xtandi causes fatigue, but I just want to keep going.
There were 3 weeks before No 3 Lu177 when I cycled 960km at good speed, but I can't do that now, and difference is that I'm taking Xtandi.
Nice weekend coming here, and beautiful concert of classical music at 2:30pm tomorrow at a small Anglican church.
Healing music. Maybe Jesus is assisting, the venue is just the best place for music, and for Jesus, if he's lurking about somewhere.
I discussed Jesus with a lady of 40 who is extremely into Jesus and God etc, and there's no doubt she's a lovely person. If I was 40, I'd love to marry her, she'd make the house nice, maybe cook a good stew, and say prayers all day. Anyway, I said to her I had heard Jesus is returning here, so I've offered to have him stay at my place rent free, and I can wise him up about how to survive the miserably cruel efforts by Australia's Border Control brigade to keep out the legions of the poor trying to come here for a better life without being invited.
Christ was a Jew, and man from middle east, brown skin, and a damn fundamental extremist who wanted to make life better for most ppl, but he ended up on a cross. If he comes here again, its no use he say to authorities that he is Jesus Christ. They will immediately think he's a schizophrenic who needs to be locked up in a detention centre for undesirable illegal migrants that have been set up.
Christ will find than modern authorities are every bit as severe as the Romans, and its no good trying to send him back from where he came from, if he says, "I've come here from Heaven because my Dad said the world needs to get its act together." Border police would roll around laughing. Not if Dad chucked a few bolts of lightning to strike a few police.
But the Big Dad is not like that, he's mellowed over last 2,019 years. Anyway, Jesus could use all my carpentry tools I still have to do a few maintenance jobs around my place, and he'd be most welcome, just have to hide him right, let him post online, see what happens. My lady friend was able to see that its no use being too serious about Jesus. A bit serious, yeah, but if he turns up here and tries to do a miracle of water into wine, the Excise Dept will arrive pronto and demand a tax payment, and fine him for making alcohol without a permit.
So, **CHEER UP FOLKS**, today is a poet's day - Piss Off Early, Termorras Satdy, OK, you have made it through yet another week of life.
I hope the lady friend brings a friend to the music tomorrow. Music by Bach, Vivaldi, and blow ins like Mozart, all men of faith, and so musical, and all in a house of God, and although I have a questioning nature, its like being in Heaven when I'm at that little church with 30 musicians going for it.
For those who believe, of course Jesus is everywhere, but it might be more plausible to believe he's in one place, but accessible from everywhere.
History shows he lived, and preached a good message, but much of humanity ignores all of it. The theological ideas about God and Christ's miracles are far too difficult for me to accept as being true, and much of the Old and New Testaments are is riddled with the fake ideas of the past. I cannot believe he rose from the dead and ascended to Heaven. Really? without even wearing a space suit? I guess that he's buried somewhere, but ppl have forgotten where. That's a more likely reality.
I was happy to be a carpenter as a young man, like Jesus. I seemed to have an inbuilt sense of right and wrong that Christ wood have agreed with.
So if he does come back to us, and stays at my place for awhile, he sure is welcome, but this idea is really a fantasy, but then we need what we can imagine to make reality bearable, IMHO.
I can just see the tour bus turning the corner in Oz and the guide saying "And that's the cross they nailed Patrick Turner to. And that is the cross they nailed his cycle to." I do hope you are enjoying your day.
Yeah, but they are running out of wood for crosses, and often when busses go around corners there are crosses where they have nailed up Polly Tichanz + party friends and relatives.
Yes, enjoying my day, rather more alive than dead. I don't have a missus, but bicycle is happy I am riding it.
In hindsight, my quotable is not nice, but then who would not argue that I might be insane? Nevertheless, it seems to me there are so many ppl who prefer irrational living of life to the difficult life of rationality.
Might I lived my life a different way? of course I should have. But when I meet ppl I never think of them being at least a bit insane, but try to help them with their problems, understand their issues, beliefs, see the good side, then wonder when they are going to say something to make me laugh. This does not always happen at all.
Up to 2014, I had shared house with a lady for previous 11 years who suffered depression, and allergies to 101 things but she was an ideal person to share house with, although a little insane. I had to be extremely careful about what I said about anything, lest I trigger a negative reaction. The classic quotable of hers was one day when something went a little too far for her was "I HATE LOVE...." and all I could do was stay calm, and consider that she was not alone to think that about love. About 2 months later, while cycling around the suburban cycle paths in what could for some be called Nowhere Land, I saw "I hate love" painted on the path so if you thought love triumphs over all, love brings ppl together, love is beautiful, or that God loves us, you'd be wrong, because so many have zero ability to give love or receive it, and for them, love is entirely vexatious, and completely disturbs them.
Later I thought that the woman I'd married in 1976, and who fled after 18months, suffered the same difficulty with living life. She didn't really know it herself, but a doctor had referred he to a psychologist because her negativity was so high, and when I finally got her to admit what the heck she was talking about with psychologist, she was prepared to admit she hated me, and I said "Well all wives could hate their husbands at some time, and we need to work out why; oh, and is there anyone else yo hate? " and she hissed, "Yesss, me mother" I blurted out "Do you think that's sane?" and then she ran about the house howling hysterically, so I ran after her, caught her and held her close until her rage subsided, and I calmed her, got her to bed, and to sleep, because next day we had jobs to go to, and had to be fully operational.
Later, no reasons were given for her hate, no working out anything, she receded further into herself, but was sane enough to carefully arrange removalist to whisk her gear out of the house and catch the late night plane out of town to Perth, 4,000km across Australia. Jesus, was I that bad? Well, all the ppl I met later thought not.
That lady I married might still be alive, and how she may have handled getting cancer or some other illness might have been extremely difficult for her, easy for me. But she made sure I could not help her, and later complained I did not care, without noticing she'd placed herself beyond my care, and in fact into the arms of others......
and with whom she'd soon be fighting with...… Oh dear.
I have survived the effects of involving myself with ppl who had frightful difficulty coping with life, even at 22. But I found it extremely difficult to find anyone saner than those I did find.
A marriage celebrant could ask a man "Do you take Cynthia, as your wedded wife, one who's been around a bit, as she really is, with all faults if any?" Now what man could feel totally honest when he replies "Yes, I do".
By the time I was 30, there was an extremely low possibility of me having to say stuff I could not really mean in front of gathered friends and family, all dressed up, hoping for a good feed after a ceremony. But I later witnessed so many good marriages of my customers who wanted me to make large alterations to their houses, and their sanity was remarkably deep, and nourishing to each other. For them, not everyday was fun, it was hard slog, like it was for me. They liked work like I did.
We must love the insane, but be careful because they cannot see what sane ppl see, they are in fact unwell, troubled by what does not trouble the sane. And Ppl can move from sanity to madness and back again. I've seen it happen. Cheer them up, don't expect too much.
I had a very nice cycle ride yesterday, my right hip is still a bit sore but I think its a lingering EBRT radiation side effect that may never resolve, or heal up fully.
But it was unavoidable because I did try to make sure Pca mets near hip joint had the extra EBRT to encourage the Pca to die.
I later visited an exhibition by members of Historical Radio Society of Australia, with many fellows over 80, and a few under 50, with their amazing collections of ancient AM radios. Was interesting to see what my grandfather enjoyed after 1922 when broadcasting enlivened the ppl of our world as much as the printing press, or computers did in about 1995, then mobile devices. But is it all sane behaviour?
Our inventions did not avoid wars, they facilitated them.
Are we not neglecting Nature?
But had I got Pca in 1922, I would have been diagnosed way too late, then had my balls cut out, be lucky to get back home without dying of infection, then die a bit later from runaway mets. Male life expectancy in1922 was very low; hardly anyone lived to get the old age pension at 65; that's why politicians were so happy to promise giving ppl a pension to get elected, the promise cost the nation peanuts. Not now though, and ppl are costing a huge sum of $$$ after turning 65. So we need better Pca prevention.
Zytiga does not cause permanent peripheral neuropathy like the one that could be caused by Docetaxel. The survival advantage is the same for docetaxel and zytiga. Docetaxel does not offer an advantage if there are few metastases .
I agree with you, Tango... The PEACE-1 trial will provide some answers in regards to some of these issues of using Docetaxel and abiraterone with ADT and IMRT
If your immediate goal is to prepare for Lu177 treatment, early administration of Docetaxel, radiation, or Ra223 has shown to reduce the effectiveness of Lu177. ADTs do enhance PSMA expression initially, but they also put cancer cells to "sleep". So there's a balance to be struck, based discussed with your MO.
Give the Lupron more time to take effect. More than half the men in the forum are on it as the "base" treatment, and many of us have got years of low PSA without anything else. That will give you time to
1. Stop doing whatever it was that caused a weakened immune system and allowed the cancer to grow. e.g. Junk food, overweight, sugars
2. Get onto a good raw food diet (see other post above for this).
3. Do a lot of reading. Most Onco's work from a very outdated "Rule Book" which might save them from malpractice suits, but is very far from the treatments given by the more enlightened doctors who do things quite differently - and have more patients alive as well. For example, full strength Docetaxel is never used, as they have long since found out a 10% dose (if used at all) in combination with other things is just as effective and leaves the patient comparatively unharmed.
4. Remember it is the immune system that kills cancer. Chose a doctor that hammers this truth home. An "Eat what you like!" doc is clueless.
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New choline PET scan after being off LU-177 PSMA since early May.
Failed RP & SRT; Negative PSMA PET
Optimal Management of a Man With Recurrent Prostate Cancer
End of chemo and CT scan result. 
