How Would You Know if Your ADT Was Doing More Harm than Good?

[Guihan]

The discussion about the Brisbane Testosterone Trial has raised some questions in my mind. I am raising this as a separate issue, because my weight-loss condition (although probably ADT-induced) does not fit the usual definition of sarcopaenia. Whilst sarcopaenia is strongly associated with muscle tissue depletion, it is also associated with fat gain. I have lost both muscle and fat, and I am struggling to hang onto what I have left.

 

These symptoms, together with my loss of appetite, seem to be more associated with the end-of-life condition named cachexia. However, I am sure that is not relevant to me, as I think I would know if I had only a couple of weeks to live.

 

Bear with me while I summarize my situation, then I will seek the experience of other members about how to answer some questions.

 

History

• Radical prostatectomy December 2003.
• PSA began to rise August 2006.
• Started ADT (Zoladex) September 2007.
• After three subsequent PSA rises were successfully suppressed, PSA was driven too low to register in July 2011, and has remained below recordable levels ever since.
• I have now been on ADT for 11 years, and have had a total of 24 Zoladex implants.
• CT scan of my torso revealed no sign of disease.

 

What I Would Like to Know

The discussion about ADT-induced sarcopaenia has prompted me to ask you learned gentlemen for the benefit of your experience in relation to these questions:

• It has been pointed out to me that long-term ADT can permanently disable the function of the testes. When my doctor ordered a test of my testosterone level, it came back as "Too low to register". How can I determine if my testes are still functioning?
• My PSA is also still too low to record. Even if I stopped ADT now, it could be years before I see any PSA reading. If my testes are already permanently dysfunctional, my testosterone-deprived muscles are unlikely to wait that long for nourishment. Should I begin testosterone therapy now?
• The Brisbane trial is using oral testosterone because it metabolises in the liver, and delivers useful muscle nourishment without feeding any prostate cancer. It seems that oral testosterone would not be suitable in my case because it depletes fat levels (and I have no fat to spare). What form of testosterone would be most apt in my case?
• Because I have not been able to measure any PSA for many years, it seems possible that my prostate cancer has now vanished. How can I find out if I still have it?

[Patrick Turner]

44 minutes ago, Guihan said:

Because I have not been able to measure any PSA for many years, it seems possible that my prostate cancer has now vanished. How can I find out if I still have it?

I doubt anyone can be sure a previous cancer has entirely vanished. 

But the Brisbane trial seems safe enough in principle because the oral testosterone dose is absorbed by liver without raising T level in blood so any small amount of Pca will not get a boost to its growth by T. 

The liver makes muscle growth chemicals when stimulated by mild oral T doses, so the muscle wasting might stop, and muscles might regenerate, and perhaps other beneficial things occur and the trial is to be well supervised so IMHO you would have nothing to lose if you applied to take part. 

Patrick Turner. 

[alanbarlee]

I wouldn't be so sure that ADT or steroid induced loss of muscle mass is necessarily accompanied by fat gain. The latter often shows up as testosterone disappears, but the sarcopenia seems to follow later. Similarly, I'm not sure that oral testosterone (if judged appropriate by your medicos or trial investigators would necessarily strip you of all your fat resources. Your diet might need adjusting instead   

 

If you need some second-line confirmation that your total absence of PSA corresponds with an absence of tumours, the nearest you can get to such a happy state - with reasonably available technology - is a 68gallium/PSMA11 scan. However, don't be surprised if your medicos see that as a waste of resources.

 

After 14 years of post-RP ADT3 - - - including abiraterone and steroid for the past 5 1/2 years - my PSA , like yours, is virtually undetectable at 0.01. However, in the last few years my muscles have wasted badly, and, like you, my fat level has also dropped significantly in the last year  . However, as a 77 year old, I would judge my fat level to have stabilised and my BMI to be about optimum - and I'm eating well. I've been doing resistance training at the gym for 3 x 1 hour per week for the past couple of years,  which I'm hoping is at least stabilising muscle loss, as well as increasing strength. I'd  increase gym frequency to daily if I had the time. 

 

In the meantime I've cut my steroid dose (dexamethasone) to alternate days (with ACTH monitoring), and I'm planning to discuss a weaning away to a monitored holiday from abiraterone with my oncologist in the next few months. If that goes well, my next plan is oral testosterone, (ideally on the back of a successful Brisbane trial), to hopefully recover some muscle mass.

 

Cheers,

 

Alan      

[timbaker]

I am not a doctor but if my PSA levels had been as low as yours for as long as yours I'd be taking a holiday from hormone therapy pretty regularly. I have metastatic disease that has not progressed and only regressed since diagnosis 3.5 years ago and my PSA generally hovers around 5, give or take, but I try and take a break from ADT because I find the side effects so debilitating and was almost suicidally depressed at one point late last year. For me its about balancing quality of life and longevity and maybe I'm unconventional in voting for quality of life. I had six months off zoladex last year without any progression of disease and in fact the complete disappearance of a lesion in my femur during that period, and I felt like a new man for the break and even some subtle return of libido. I'll continue taking breaks unless my oncologist flags that it is a crazy risk. 

[Guihan]

Thanks, guys. Interesting that I am not alone with some of these symptoms. My continuing interest in the long-term effects of ADT have led me to the well-researched paper at https://onlinelibrary.wiley.com/doi/epdf/10.1111/bju.12964.

 

Of particular interest to me was the suggestion that Intermittent ADT (IADT) may be associated with decreased life expectancy, compared with continuous ADT. This raised the question about which form of ADT I was having. It is difficult to find a reliable definition for IADT, but I suspect that the term usually applies to the situation where a specialist implants Zoladex (or similar ADT drug), then does nothing until the PSA starts to rise again. At this point, he repeats the same routine.

 

My urologist initially did two implants, three months apart, before discontinuing treatment until the PSA rose again. I regard that practice as 'IADT'. After four implants, I switched to an oncologist, and thereafter had one 3-month implant every six months. From months 4 to 6 after each implant, I consider that the Zoladex would still be working, albeit with much less effect. Accordingly, I regard that form of ADT treatment as 'continuous'. Maybe that is why I am still here after so many years on ADT. 

 

But my ADT ends now. I can see no other reason for my weight loss, and that paper highlights a heap of other reasons why ADT is not the 'magic pill' that we sometimes hope it is. I have thought of Zoladex as my friend, and I am grateful for what it has done for me, but it now seems to have turned against me, and it is now time to end that wonderful friendship!

 

 

[timbaker]

Thanks for that link, I learned a lot and it is all fairly alarming. Maybe I've been naive but I don't think I had a full grasp of the many negative impacts of ADT and it seems border line negligent that patients are referred to psychologists and exercise physiologists as a matter of routine. This has given me much to think about. Fortunately I began an informal exercise program immediately after diagnosis on the advice of a naturopath, whom mainstream medicine are so fond of demonising, but without her I would not be in such good shape today. 

 

[Patrick Turner]

Good to hear from all the guys above.

Most of you, like myself, have had ADT for far longer was originally planned because RP or RT just did not work as planned.

But I had two breaks from ADT, first was 2 years after I first started ADT and Psa rose from nadir of 0.08 to 8 in 6 months and I had same Psa as I'd had when an open RP was attempted, but abandoned, due to too much local Pca. The Testo went from less than 0.5 to 20, within normal range of 8 to 38, and all sex function returned, average speed on bike went up 5kph, and I felt marvellous, except for the psa doubling time.

So I returned to ADT, mid 2013, Psa nose dived to 0.2, but crept up to 0.4, I took another break in mid 2015, Psa took off like 2 years before so I re-started ADT after Pda went to 5.6. Testo level did not bounce up, Psa returned to about 1.0, then climbed to 5 in May 2016 when ADT was deemed to have failed, as it does in in so many men.

I then has PsMa scans to see extent of Pca, only 2 lymph nodes found, I began Cosadex added to ADT and had 31gy additional RT added to PG, 45gy to each lymph. Psa noze dived to nadir of 0.4 but next year rose up again, so I stopped Cosadex, started Zytiga and got 8mths suppression until earlier this year so I had 5 chemos, Psa quadrupled, and now I am on Lu177 and I am riddled with Pca all over me.

But before first Lu177 I cycled 960km in 3 weeks, and fast, feeling well as chemo side effects faded, good muscle mass, slight fat loss after quitting my intake of apples, whose fructose converts to visceral fat. Now 82Kg, but with cooler weather and more H20 in body I will be 83Kg, same weight as I was at 41, when I raced bikes.

Some muscles have decreased, fat has increased, I averaged 30kph on rides around town at 40, but now its 22kph at 71, and very few ppl ever overtake me.

For some unknown reason I got an ache in hip after 2nd Lu177 inject just 15 days ago. It occurred after 1km on bike, then faded in 20sec, then another km, same thing, so I am taking a break off the bike. I know I have Pca in right femur top, and pelvis, Lu177 can make Pc bone spots ache a bit as it gets to work and this causes inflammation of joint. I am swimming about 0.6km each day. And today I helped my fence contractor who is replacing a brush fence for a colorbond fence. We got a good day's work done by 12:30pm. Much lifting, carrying, and the sweat soaked my clothes. No hip ache, no back ache. Muscles all worked just fine. I got to help a man I liked, and of course the $4,000 expense is putting $25,000 on the house value. 

So really, although Psa is 20, and I am riddled with Pca, I ain't that crook right now. In a year, things could be very different after Pca grows back after Lu177, and maybe I need Ra223. I doubt anything will stop it, They said it was aggressive, it seems like it definitely is. But I ain't useless yet, and I can keep active, and I probably will ride another 10,000km in next 12 months.

What man of 71 is not threatened by some Sword Of Damocles raised to threaten him? If not Pca, maybe heart, lungs, or a 100 others, So one day at a time, value your friends, love life, keep going, until forced off the stage. 

 

Now the ADT I am still having injected monthly is now probably absolutely nothing and I bet if I quit the injections my balls would not return to making testo, and that may not matter because Pca may have mutated to grow quite well without any testo, and my adrenal gland might be back to work after quitting the Zytiga 6 months ago.

Doc said testo was extremely low just before 2nd Lu177. I really don't know if adrenal gland is damaged by Zytiga. But I have no heart rate irregularities I had while taking Zytiga. There are limits to what tests are done; docs are guided by trials. 

I have a demon inside me which tells me to get off arse and do things. I never needed any naturopath to tell me stuff. Perhaps these folks would be more convincing if they rode 30km across town with me for a coffee, and we could compare their methods of living to mine. I'd expect them to keep up on the 30km ride home. The world is full of advisors, full of wisdoms. But oomph must come from within.

I have a friend of 79 who worries about his Psa of 0.01 years after his RP with EBRT 5 years later. And he has not even been forced to use ADT. He has ZERO to worry about. But he's a worrier, and once took pills to stop it, but he ate too much, and raged about his weight. STOP eating a bucket of ice-cream each week, I said. Went right over his head. People complain about self inflicted woes. Many ppl in the world have this problem. But my friend has finally swung a corner to less weight, a remarkable achievement because so many at 79 have lost marbles, and most control. He still had good self awareness. He arrived at age 60, fat, 60 cigs a day, nearly alcoholic, at least 2 broken marriages, but at 66 he was cycling, and we had 3 years at once a week, and he didn't smoke or drink, and although heavy, he was not fat, but he did get Pca. He also got a neck cancer, but got free of it. His treating doc for that died a year later of a similar thing.  He remains a good friend, and I am grateful to have any friends. 

Patrick Turner. 

[Guihan]

The mist surrounding my weight loss has cleared at last. I was eventually diagnosed with coeliac disease. I am now on a gluten-free diet, and my weight and appetite have returned to normal.

 

Nevertheless, I was baffled why, at the age of 81, I had suddenly developed coeliac disease. Well, I have also solved that mystery - and the answer may come as a surprise to some of you. I have just found this paper https://www.ncbi.nlm.nih.gov/pubmed/7200931 which shows the strong link between low testosterone levels (the main purpose of ADT) and coeliac disease. As I always suspected, my ADT was, indeed, doing me more harm than good. Zoladex served me well in getting my PSA down below measurable levels, but they have now remained unmeasurable for more than 8 years. I also have a whole raft of other symptoms associated with low testosterone levels, including numb hands and fingers, pale complexion, memory loss, and several other things. I abandoned ADT in January this year, and I will be seeing an endocrinologist shortly to see if we can restore a safe testosterone level. Hopefully, this will ease some of my symptoms, and may even CURE my coeliac disease!

[Patrick Turner]

I am not sure ADT would have caused coeliac problem. Now you say that avoiding gluten has made weight and appetite go to normal.

There may be no safe level for testosterone because your Pca may grow fast with any higher level than you have now, which probably is very low, and being made by your adrenal glands, not testicles.

I'm 72, and have battled with Pca since 2009 and testosterone is still my enemy. But the side effects were minimal over last 10 years because I kept fit, and cycled an average of 11,000km  a year since diagnosis.

I live in Canberra where its very cold in winter and being fit meant I handled living here without air-con all the more easier. But 12 months ago I finished 5 chemo shots which have left me with much worse neuropathy than you describe. The chemo failed and Psa went from 12 before to 46 after, with multiple new mets. But neuropathy is slowly getting better. Since last Nov, I had 4 shots of Lu177 with almost no side effects and Psa went from 25 before to 0.4 last month, and docs put me on Xtandi to aid the action of Lu177. Seems to have worked. I have read that Xtandi makes neuropathy last longer. So what.  

I am now cycling 100km+ a week, eg this weekend I did 50km Saturday with some horrid hills and 26km Sunday but easy, with a massage added to ease a painy area that goes back to having both knees replaced in early 2017. Its probable that my testicles are totally atrophied and would never return to normal function after ADT since 2010. But in 2017 after the double knee op, I rejoined a cycle group and rode faster than the men my age and younger who had a "full bottle" of T, so this demonstrated to me that a man does not need T. He needs a good diet and to maintain fitness. Nobody has said my bone density is so poor I should not cycle. Exercise like walking usually keeps BD high despite low T. I'm a hopeless walker because I have a sore ankle from accident at 19 on motorcycle, so I cycle, which does little for BD. But if I could walk, I'd be right out there doing good bush walks around here, plenty of oldies are doing it.

If you had no other treatment for PCa other than ADT, and Psa > 0.01, then you are extremely lucky, and your Pca is a wuss, unlike mine, which showed it wanted to kill me, and probably will eventually.

I have a friend of 80 who survived his Pca with RP and then a pile of EBRT years later. But he just had a had a knee job and wants the other done to get back to walking more. He's never had ADT but is still a bit frail.

Another friend of 59 died this year from Pca after a horrid fight of 3 years where nothing much worked while the Pca mutated faster than doctors could find treatments for. ADT was a stunning failure.

Now this man had coeliac disease and knew how to eat, and played tennis all through his 10 shots of chemo that failed. Now I have no idea whether the Pca and ADT and coeliac are somehow linked up, and I doubt doctors know either, and I have no clue if long term ADT causes coeliac. I'd be very wary of increasing T levels if they are low.

I could say I have some numbness in hands and fingers, plus same in legs, and I walk with style of 90 yr old.

But some of this is due to plain old age. You are able to email us OK so your mind may not be as bad as you say.

And I've been losing my house + car keys for last 50 years. But I find them. Never needed a spare set yet.

What man over 70 does not have a "whole raft of other symptoms associated with low T levels" We are just not 25 anymore, and I know that the older I get, the better I was. But I'm able to live independently without a wife and to do house work, mow lawns, clip hedge, and go cycling. These things will become impossible as I slowly fade down due to combination of aging, Pca, and treatment effects, and the probable getting of new health problems nobody could ever forecast now. I cannot live forever. But I am quite happy being alive, even though valued by nobody except the doctors, who make a good big quid out of me. An old man must pay to stay alive, to delay the inevitable. I am glad it is not the year 819, when I might have had a 30yr lifespan in Dear Old Ireland, where life was brutally short. Try to look on the bright side. 

Its a dull cloudy cool day here. Sales of anti-depressants are high, but I've never ever needed them.

Hedge clipping later this week, its the one house job I really loathe the most, but I have to stop the "garden" becoming a jungle, with real high expenses if I deal with it later, rather than sooner. I have not reached the point where I allow my block to go totally wild because I cannot be civilised any longer. 

Patrick Turner. 

[Guihan]

On the other hand, here is an up-to-date professional opinion on testosterone therapy taking prostate cancer risk into account: https://www.cancertherapyadvisor.com/home/cancer-topics/prostate-cancer/testosterone-therapy-safe-despite-prostate-cancer-risk/

 

[Patrick Turner]

All I know is that all my docs think it would be extremely foolish for me to allow testosterone levels to go high now.

In 2010, I began 2 years ADT + EBRT as primary treatment, so after 2 years, I paused ADT and Psa went from 0.08 nadir to 8.8 in 6 months, so I went straight back to ADT. I had another shorter pause of ADT in 2015, and Psa whooshed up, and each time after restarting ADT the Psa did not go down to previous nadir. I doubt I need to read the above link you just posted but others might find it highly educational.

Compared to many other men my age or younger, I reckon I'm doing quite OK being chemically castrated. 

I'd suspect that many younger body builders who inject themselves with T to twice normal levels could much encourage start of Pca.

And perhaps a man with naturally normal T could consider lowering it a bit and still have enough T but lessen risk of getting Pca.

I'm still a stage 4 cancer patient, so fiddling around with T is just not on. If I quit ADT now, probably my testicles would never re-start T production. If I wanted higher T I'd have to take pills or inject it. But before I was even slightly tempted to increase T I'd wait until Psa went to >0.01 after recent treatments, something I doubt will ever occur. I cannot predict the future with my Pca. Since diagnosis in 2009, I have always thought my Puff the Magic Prostate Grenade might kill me in a year's time, so I live each day as it comes. 

Patrick Turner.  

[Guihan]

Perhaps I did not properly explain that, for more than seven years now, my blood tests have been reporting that my T level is too low to even register. I agree that, anybody with advanced prostate cancer would be foolish to allow his T level to get to a high level. My problem is that my quality of life is being severely impacted by what my endocrinologist described as 'induced hypogonadism' (as opposed to naturally-occurring hypogonadism). My specialist, GP and I are agreed that there must always be some degree of risk associated with increasing testosterone levels. I am probably a rare case in that my PSA has been kept undetectable (by ADT) for over 8 years. I have been especially fortunate that no castrate-resistant disease has emerged. Recent research shows that testosterone therapy does not appear to be particularly dangerous for men with ADT-induced hypogonadism.  I accept that others may not share that belief. Nevertheless, when the quality of ones life is being severely reduced by the side-effects of possibly unnecessary ADT, it may sometimes be reasonable to opt for quality over quantity. If I am unlucky, my cancer may return some time in the future.  If that happens, and if I am very lucky, the ADT may work for me again. My family and my doctors support my decision, but it must be for each individual to decide according to his particular disease history and the latest research findings.

[alanbarlee]

Hi Guihan,

 

You make a good case to give ADT withdrawal and T supplementation a shot, given your prolonged and very low PSA (and testosterone - although more sensitive MS-LC analysis not routinely available in Oz might reveal a low T level). I'm sure that you'll be carefully monitoring PSA as you go.

I wonder though whether gel / patches might not be a preferred option to the oral route for supplementing T - rather like the estrogen option sometimes for T suppression prior to HRH agonists.

 

I'm considering something similar, since ADT + Zytiga + prednisone + Avodart has had my PSA at 0.01-0.02 for some time now, while I've been struggling unsuccessfully to regain lost muscle mass and strength with gym workouts and walking.

 

I'll be interested to see how it goes with you.

 

Best wishes,

 

Alan  

[Guihan]

Alan, I share some of your reasons for considering having a break from ADT. Until last year, I regularly attended an exercise program, with emphasis on weight-bearing. Despite being the oldest person there, I had been able to manage heavier weights than the others. This year, that has all changed. I have lost a great deal of muscle tone, and my 16-year-old granddaughter can now beat me in an arm-wrestle. I have been finding it impossible to rebuild my muscle strength.

 

However, it was not merely muscular strength that concerned me. My bone density must be in strife as, for the first time in my life, I have suffered broken bones. The first time it was a bone in my left arm, but soon afterwards I managed to break two bones in my right arm.

 

I had also become concerned about my extremely itchy skin, my numb hands, and my recent inability to follow the plot of TV plays. I did a bit of research and soon discovered that low testosterone levels can be related to memory loss, and even Alzheimer’s.  I also found that it was strongly linked to coeliac disease (another ticked box for me).

 

At the age of 82, I consider that I have already scored pretty well in terms of time, so I felt it was now reasonable to address the quality of my final years. Unless and until any cancer symptoms return, I am more than willing to give quality of life a go.

 

If you reach the same conclusion, please do not do so on the evidence of my case. We are all different, and you should feel you have thought things through thoroughly before you make your decision about abandoning ADT. I discussed it with my doctors, and I would not have gone ahead without their blessing.

 

Whatever you decide, I wish you long life and good health.

[Patrick Turner]

Hi Guihan, I think you have investigated what is best for you with your doctors and I don't need to really offer an  opinion on raising your T levels a bit, because you are aware of possible results with your Pca.

I'm only 72, and probably have very low T while continuing ADT plus enzalutamide which I began during Lu177 treatments. I feel fine, but when I am 82, if I live that long, I could expect to have much muscle weakness, memory and cognitive bothers that may lead some to think I am losing my marbles.

But I don't much worry about the future, it will be whatever it will be.

Today, I cycled 60km across town for a coffee, had a nice chat with a lady I met, rode home, spent an hour with a friend of 80 to talk about his many concerns, and have a few laughs, so for me life's just fine, but could so easily be so much worse, as I have seen every time I spent time in a hospital being treated by angels who have my welfare in mind.

We sure are all different, and respond in different ways to treatments but I am not going to stop ADT yet. I will not give in to temptation ride a motorcycle because if I did fall off, I might become just a bag of broken bones.

The bicycle is OK, and the sealed tracks I ride on mostly have grass each side, so damage at 25kph would not be high if I fell. 

Keep well man,

Patrick Turner. 

[Patrick Turner]

Hi Alan, I've had ADT for many years, and I had Zytiga + prednisolone which gave me a further 8 months Psa suppression before I began chemo. The Zytiga etc didn't reduce muscle or average bike speed, and only side effect was irregular HR, mostly in hot weather. I'd had both knees replaced 3 months before Zytiga, and I recovered very well, and then while on Zytiga I could ride faster than guys in group with full amount of T during winter and spring and no Pca or knee jobs.

But when summer came, I had to give up group and set off on 60km+ rides at 6am, and I got good average bike speeds.

What really has slowed me down this year was effects of chemo last year. I have read enzalutamide I am now taking makes chemo effects worse, but today I cycled 60km, maybe 1km slower than last year, so all went well, so I suspect I might be doing OK for an old bloke.  Over winter docs told me I might need a hip joint, so I quit the bike for 3 months, let things heal, because hip was sore. But it was not Pca treatment that caused the hip bother, it was some building work in April - May, plus a few ligaments that didn't like having to change length after the knee jobs years before.

A good hip surgeon looked real closely at MRI and X-ray and said I had many km left in hip joint, no need for a new one, and to keep cycling. He was right where others were wrong. That doc is a keen cyclist so understood me better...… I am getting some good massage for hip aiks and paynes, be quite OK soon. 

So unless something stops me cycling, I'll keep going, its good for my health, along with a mainly vegetarian diet with low carbs. I'll try not to fall off the bike. But I've cycled 240,000km so far in life, still in one piece.

Patrick Turner. 

[alanbarlee]

I admire and respect your positivity, Patrick - the amazing kilometres that you put in on the bike, and your continuing investment in staying abreast of (and intelligently acting on) your treatment options certainly make you an empowered patient!  

 

My father-in-law was a racing cyclist back in the 1930s-40s, and won the first Melbourne Cup on Wheels. He was also very active in The League of Victorian Wheelmen for many years after he quit road and track racing, and he rode with the Preston Club's Golden Oldies well into his eighties - so hang in there!

 

I've been on Zoladex + Avodart for 14 years, with Cosudex for the first 8 years eventually failing and replaced with  Zytiga + prednisone for the last 6 years (no chemo). PSA dropped down to 0.01 by the 5th year of using it, i.e. progressively, rather than abruptly.  Based on PSA halving times, the Zytiga took out one population of PCa quite quickly , but the remaining one took considerably longer, although eventually succumbing - at least for now.

 

With the long-term adverse effect of all these drugs on muscle mass (but thankfully not bone density) in spite of diligent gym work - and given the now almost undetectable PSA (and my age of 78) - it's tempting to give myself a holiday and to just watch PSA for a while. I don't have any illusions that testosterone will magically reappear. Unfortunately there's very little literature on intermittent second generation androgen-targeted drugs when they work well, and not a lot either on testosterone replacement in this context. I guess it will need a non-commercial university hospital to carry out prospective trials on these important 'survivor' matters.

. 

My next chat with the medonc will be interesting!

 

Cheers,

 

Alan     

[Patrick Turner]

Hi Alan, it seems you have gained a huge amount of time benefit in delaying Pca progress. Hardly anyone I know or have heard / read about has got 14 years on ADT, 8 years with Cosadex, and 6 years with Zytiga. That's 28 years total no? My onco said the longest time any patient of his got on Zytiga was 2 years, I got 8 months. And 6 months on Cosadex, and both when added to ADT, which gave about 6 years without the other add-on stuff. 

To be able to analyse why you got such long times of Pca suppression, or Pca cell death the Pca should have been analysed right along through your time wit Pca and correlation between time and DNA and action of drugs might be made. It is probably too late to do any worthwhile analysis. Its also a PIA to have to donate Pca samples, and maybe risky because they have to cut into Pca mets to get sample which risks Pca spread.

 

Methinks the research is focused on getting things to work for much shorter times and for at least 50% of carefully selected patients so they then qualify for Govt approvals and then oh how the money rolls in to fund the research.

I had a friend Paul Yates who posted here a few times, who had RP, then needed 70 Grey EBRT, got 4 months on ADT. Cosadex then made Psa go much higher like it fed the cancer, then chemo failed, but showed promise for only 4 shots, then he booked for Lu177, which might have worked, but he got DNA checked for Brca2 and was positive, and PARP drugs made Psa go from 40 to 432 and he got real sick with a bunch of new mets in liver which had no PsMa avidity, so could not have Lu177, and he died within 3 years of his diagnosis. Epworth have good reputation, but he did didn't do very well there. He also had coelic problem. He tried keeping fit and healthy, played tennis and walked his dog right through chemo but nothing seemed to help him for long, and he was 60 and for his wife of 50 and his 2 kids it was a tragedy because he was main breadwinner.

 

I raced as a veteran for 6 years in Canberra Cycling Club between 1987 and 1993, and did about 100,000km but had very few wins like most in the bunches who like me did not have any athletic genes. I just enjoyed it, so I did it, and it was not about winning, and those who did win were the skinny freaks who had exceptional oxygen uptakes and low fat% from early age, so they'd been winning since childhood, and lived in 4 bedroom houses with one room needed for all the trophies. I made it to B grade vets for awhile, but I only ever did well in one long 138km "open" race in 1988 when a mate and I scored a good handicap position at the start, 45 minute group, and it was a windy day, so bunches didn't get much benefit from drafting. My mate and I rode away from 10 others, and mate who was good sprinter, but 57, and who had been pro cyclist in Europe got first and I got second, as his "domestic". The scratchies had split up, but their leader, a young bloke pro was only 3 minutes behind us. Prize was a bike for each of us, but the bikes were awful quality as they were old stock from shops who could not sell them. I swapped mine for a frame I still have. It was not what we won that mattered, in fact the winnings were garbage, but it just felt good to be that fit on the day.

I have GFE genes, Get Fat Easily. Also have LHK, lousy horrid knees, they pushed me off the bike in 1993, and later stopped me doing building work in about 1995. I changed trades to electronics - sit down work, that paid 1/10 of building work. I had arthroscopy in 2005 which banished the pain and need for drugs, and I got back on bike in 2006, weighing 102Kg. I then lost 20Kg in 7 months to get back to racing weight for me at 40. I did once try to diet down to 78Kg when I raced, so I went up hills faster but was weaker on flats. I just was never meant to be fast.

But I could ride 300km from Canberra to Sydney in a day. Rest for a day, then ride back. 

I'm now 83Kg, but fat% is higher, and ADT and chemo have reduced max average speed to 23kph when it could have been 27kph, but that's slower than the 31kph that I saw being done by the 60yo freaks in cycle clubs. I did 60km yesterday, and I did not bother to record speed, I could not care less. Its enough to just get off the butt and just do it, lest I rot to bits sitting down. I've done 140,000km since 2006. Some years I did 12,000km on ADT.

But its many years since anyone over 70 has overtaken me anywhere I cycle.  

There is no proof at all that my exercise routine has protected me from Pca growing faster than it has. 

I quite like being alive despite the aiks and pains. Life could be better, but so what if it ain't?

Another rain-free day here, a rest day, maybe ride tomorrow. I have liked doing 220km a week, in 3 rides, with one being 100km. I cannot keep that up forever but any man who cycles at least 5,000km a year, ie, 100km a week average, and regularly, is getting a big health benefit.  

Patrick Turner.  

[alanbarlee]

G'day Patrick,

 

I'm afraid you've double-counted the survival data in my last post - I haven't been on ADT+ for 28 years - 'only' 14 years( 8 ADT3 +6 with Zytiga) - plus 3 previous years post RP with no meds.

 

I'm targeting your '28 years' figure, however. That would get me to age 93, which is more than enough to see my grandkids as successful adults, hopefully coping adequately with the global warming crisis that we're leaving them.

 

Cheers,

 

Alan     

[Guihan]

It seems that men with prostate cancer who still have doubts about the safety of having testosterone therapy to counter adverse side-effects of ADT can relax. This paper entitled 'Testosterone treatment is not associated with increased risk of prostate cancer' is quite definitive, and supports other similar findings. I was particularly pleased to read this as I commenced testosterone replacement therapy yesterday.

 https://www.ncbi.nlm.nih.gov/pubmed/27409523

 

[alanbarlee]

Thanks for the above link, Guihan. I remember noting this work a couple of years ago.

 

I would just comment that that study was specifically aimed at treating unselected hypergonadal men, with the positive PSA plus biopsy cohorts showing little difference between T-treated and untreated men. This is not quite the same as a risk assessment of giving T to a large group of men with a known history of PCa of varying grade group  and age but having a currently good PSA and imaging status  - although the result does give some reason for hope.

 

The key variables  for such a study would be the duration of apparent remission, which in your  case is 8 years (without intermittent therapy, which is unusual). The grade group, imaging status, age and general health status would also need to be distinguished in such a study. I suspect that a biopsy or post-RP grade group of 1-2 (Gleason score 3+3 or 3 +4) plus the absence of tumours by a 68Ga-PSMA11 scan (i.e. low risk PCa) would be a safer bet than with higher grade cancer in considering whether or not to consider (oral) T replacement.

 

Will you be part of the Brisbane trial, or just be an individual patient? If the latter, it might still be useful to let the trial PI know about your case.

 

 Keep in touch - some of us are more than interested in how you go!

 

Cheers,

 

Alan

[Patrick Turner]

I just saw 3 figures and added them up. Apologies.  So you had 14years of hormone manipulation plus 3 years drug free life after RP, so that makes 17 years after Dx. Your Pca may have begun years before your Dx. 

 

I had Dx in 2009, and Gleason 9, 9/9 positive samples and inoperable. So My Psa might have begun 5 years earlier in 2004 when Psa was about 3.0, which is what I think the threshold should have been for docs to act with what was the most reliable means, the biopsy, because in 2004, MRI often could not see Pca and the finger up bum has always been fairly useless, except to feel if PG is swollen or not. So maybe I've survived 15 years since first detectable cells of Pca might have been found.

I cannot remember having Psa below about 2.7, when my first Psa tests were done when I was about 50.

Men who are never going to get Pca may have Psa 0.7 at 40, 1.0 at 60, and I have a cousin of 74 like this. Last time I heard he was worried his Psa was 1.1. But he took a long time to pee, and didn't want to listen to me recommending he take Tamulosin to pee a lot faster and easier. So his PG is swollen, and I know he has not the mind to expect that shit will happen as he gets older, and he's very unfit and heavy.

 

I was waiting to get cancer once over 55 because I saw so many around me go down with it before 60.

But I was not really alert about the significance of Psa test, I had regular tests for many years before Dx. If I knew then what I know now, I'd have pleaded with a surgeon to cut out my PG in 2004 without any evidence of Pca present, and chances are that an RP would have been easy, with minimum nerve cutting, so thus now might have had no sexual extermination, and had the benefits of testosterone for last 10 years. My met spread probably happened when my PG Gleason score moved from whatever the minimum is to 9, thus making it inevitable I then needed the resulting $200,000 expense by Medicare and my own funding on systemic treatments.

After Dx, and 2 years of ADT and 70Grey EBRT, Psa nadir was 0.08. Then after a pause to find out if initial worked, I found it had been next to useless, Psa lept to 8, and after ADT re-start Psa never ever went below 0.2, but slowly crept up, it never ever went to near 0.01. I could see I was going to have a long fight at least, or a short one if it all mutated fast, which it seems it has not.

You mention cancer halving rates. I found they never went to zero, and always were like Paul Keating's J curve. In cases of remission, not so, a condition that is dealt with by immune system may be slow to begin with then accelerate to zero as the full force of immune system focuses on a diminishing target size. 

Marsden Hospital in UK found a small % of IT trial patients had this happen; they got a man's immune system to work and miracles followed, But afaik, not enough success has led to IT being available in a hospital near any of us. 

 

An RP in 2004 might have led to me being a lot faster on my bicycle. I might have worked past retirement. I'm just lucky that I am continent, but because of RT, its likely that I'll need a nappy soon. 

However, its no use me worrying about how ignorant about Pca both GPs and myself I used to be, or what happened as a result. I don't hate myself or doctors for not being vigilant enough. I now feel the general feeling amoung GP doctors was stupid, gung ho, and premptive action against Pca or Brca was unheard of. Ppl spoke about percentage likelihood of getting diseases, and the numbers now seem like pure bullshit. But I am now fairly well alive and still able to cycle, so life goes on, and its better than about 6 billion other ppl at least. 

 

I read that report link about men having low T below say 5 units. Never would have been my problem, because during my 6 month pause in ADT to see what Psa would do, my T measured 20 units in a normal range from 8 to 38, and so before ADT my T might have been higher when balls were not affected by ADT. And from what little I know, maybe having naturally high T for many years before Dx may have accelerated Pca formation and growth, and maybe was reason that although I didn't win many bike races, I did better on a bike than most other ppl in ACT. 

I have always thought body builders and sports cheats who shoot up with T to real high level could be making Pca happen sooner rather than later. 

I hope having some T in your body boosts your QOL. Its a bit like Brylcream when you were 25, "just a little dab'll do ya". I cannot help being aware that in 2017 after having both knees replaced I was faster than guys I used to cycle with 5 years before, and they all had a full bottle of T, no Pca.

And 2 weeks back, one of them was leading a social ride I joined, and up a 2km long hill I caught and passed him. He tried to keep up, but then could not, so I knew that all these men with full bottle were not doing any better than I was with empty bottle, plus history of many treatments, and me taking enzalutamide where I am supposed to feel fatigued, and likely to gain weight, but opposite is happening. Would I ever need to have T added again to my life? maybe not, just keep cycling.

I remember my years between 50 and 59 when my knees prevented all exercise and weight increased +20Kg.

T was high then but my fitness was atrocious, like so many other men with sedentary existence. I began cycling again, and became nearly as fast on bike as at 40, and lost 20Kg.   

During my total of 240,000km of cycling I encountered only maybe 4 women who could cycle faster than me over an average 50km ride on country roads. They didn't have much T in their bodies, and it seemed to me they were astoundingly more physically healthy than most of all other women I have ever met. One who looked like Miss Sweden, 25, passed me going up Mt Stromlo near Canberra one day, and with laconic Orstrayan accent asked me  "Are yer winnin?". All I could say was "Nah, youse just passed me", and we both chuckled; I had nothing in the tank left. She sure was a pleasant sight to behold in nice blue lycra, dancing on her pedals......

Recently, a young man from Kenya ran a sub 2 hour marathon. It is 21kph, same as my average bike speed at 72. Ladies of same age as Kenyan are up to 2:14, only 14 minutes slower than men with far lower T levels.

So my point is that a little T will do any older man, and then I'd invite him to consider serious aerobic exercise that isn't like a bit of gym work, but which is gentle, but goes on for hour after hour, followed by eating mainly vegetables so there's no hunger between meals, never any desire for junk food.   

I hope your good luck with Pca continues.

Patrick Turner.  

[Guihan]

Thanks, Alan. I rarely post on this board as I feel my case is of little interest, either to members or PCa study groups. I have lived with PCa for 16 years, and I don’t even have a PSA reading to show for it. I got PCa, had the op., and my PSA came back on four occasions, before I discovered I could keep driving it lower by having Zoladex implants every six months instead of every three months. Using that strategy, my PSA became too low to register (<0.01) eight years ago, and has not been seen since. No other drugs used, and no radiation given. I guess most members would consider that just plain lucky – but boring.

I only posted on this occasion because my 12 years on ADT is now making me unwell, and I needed to investigate the possibility of easing my symptoms. I have made the personal decision to abandon ADT, and to seek some relief with testosterone therapy. I realise that very few members would find themselves in the same situation, but I will report on my progress from time to time in the hope that it may help somebody.

[alanbarlee]

Guihan - please be assured that there's nothing boring about pushing Stage 4 PCa into total remission / dormancy - all of us would like to be similarly bored!

 

Can you remind us how high your PSA got, what your post-RP Gleason was, and any scan results you may have had, either initially or while your PSA was still dancing around? 

 

Keep posting on your progress - we're watching with great interest.

 

Alan

[Guihan]

Alan, my initial diagnosis was Gleason 6, with some extension beyond the capsule. I had an open RP, but I was never given full details about lymph nodes, etc. Even today, I have no idea where my cancer is located, or even how to find where it is hiding.

 

My (then) urologist was dealing with so many cases, and we all got about ten minutes of his time. It was nearly three years before my PSA started to climb. It got to 0.8 before the urologist decided to try Zoladex. The strategy at that time was to do two implants, 3 months apart, then to wait for the PSA to climb again before repeating the implant procedure. That sequence was repeated three more times, but I pushed for the ADT each time my PSA began to rise, so it never got beyond 0.8.  I later switched to a single implant administered 6-monthly by my GP, and without waiting for the PSA to break out. My PSA has nor altered from <0.01 for 8.5 years.