What are the pros and cons of intermittent vs. continuous ADT? I’ve elected to take monthly Firmagon injections over Lupron because of the reported lower risk of CVD. My MO is indicating I will have to stay on Firmagon continuously until I become castrate resistant. I’ve viewed some doctors saying that intermittent ADT lengthens the period until CR is reached and gives you a break from the side effects with ADT. Has anyone else had experience with this? Thanks for all the helpful comments I’ve been receiving.
What are the pros and cons of intermi... - Advanced Prostate...
What are the pros and cons of intermittent vs. continuous ADT?
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Stevana
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The pros and cons are still open to debate, and largely a matter of opinion and educated guess. For one, the definition of "continuous" is pretty obvious, but the term "intermittent" could mean a number of different things. And pros and cons could vary considerably depending on the individual: stage and aggressiveness of cancer/symptoms, age and comorbidities, effectiveness and tolerance of ADT meds, etc.
For myself, I will consider a break from the anti-androgen therapy (I just began) in 1-3 years. I think it makes sense to give a year at the least for a sufficient impact on existing cancer cells, but after two or three years I would worry that my cancer has "regrouped" and found a work-around.
There are no good studies to really refute or confirm any serious advantages or disadvantages to either cADT or iADT. My opinions are informed by the works of Liebowitz, Denmeade, Gatenby and Huggins that suggest 1) a radical CHANGE in hormonal milieu can directly and indirectly thwart cancer progression, and 2) the evolution of resistance can be delayed by alternating on/off (or low-T/high-T) treatment modes.
So the idea of "bipolar therapy" or "adaptive therapy" just makes a lot of sense, intuitively. You change the terroir that the cancer has been thriving in, and then change it AGAIN before the cancer has become totally resistant to treatment.
What keeps more doctors from trying this approach? Inertia. It is not in line with consensus "standard of care." Doctors tend to keep doing what is mostly done. This does NOT mean that "what is mostly done" is actually the best treatment, but only means no controlled studies have definitively proven "what is mostly done" is NOT the best treatment.
On top of that, the QoL argument is pretty much a slam dunk, for many men. But the doctors have a job to EXTEND life and prevent cancer progression, rather than a job to IMPROVE a life that might end up being marginally shorter as a result of pursing those improvements.
" I’ve viewed some doctors saying that intermittent ADT lengthens the period until CR is reached"
Those doctors are wrong. All the evidence is that CR occurs at exactly the same time.
"gives you a break from the side effects with ADT"
It depends on whether the break is long enough to allow your T levels to recover. Over time, the side effects of metastases increase, and any QOL advantage of intermittent may disappear.
The downside is that for men who have low metastatic volume, survival may be lower with intermittent.
You mean the POTENTIAL downside. It is only a downside if survival actually IS lower with intermittent. You do realize, that without some qualifier, saying "survival may be lower with intermittent" is pretty much the same as saying it may NOT be? If there is compelling multi-study evidence that survival really IS lower, you might want to share it.
And those doctors are not necessarily wrong, anymore than someone who says "God helped me out" is wrong. There is simply no compelling top-tier evidence to indicate that they are right. Could intermittent ADT lengthen the period until CR is reached? Well, define "intermittent ADT " for us, if you would. Because I don't see anyway it can have a singular definition.
So we might know that SOME of the many possible variations of the term do NOT show an advantage. But that is no surprise, because why would ALL the many permutations of "intermittent ADT " be beneficial? No reason to expect they would be. But a reasonable person might expect that SOME form of "intermittent ADT " very well COULD be, based on principles of evolutionary population ecology along the lines of those used by Bob Gatenby ["appropriately timed withdrawal of treatment can allow residual populations of sensitive cells to exploit their fitness advantage at the expense of the less-fit resistant phenotypes"].
The lack of proof of existence is not the proof of non-existence.
No. I used the word "may" because I was being a stickler. It is because of complex research reasons, that I did not want to get into here. Since you misunderstand me, I will explain. It definitely does not mean may or may not. Take it to mean, "probably does." I use the term "probably" rather than "definitely" because it was the result of a subset analysis, which, to be completely accurate, doesn't "prove" what the full analysis proves. The subset analysis shows that survival is lower for the subset of men with low metastatic burden who use intermittent therapy. I have shared it many times.
The same trial proved (in the full sample, not just a subset), that the men who were randomized to intermittent therapy failed ADT at exactly the same time as men randomized to continuous therapy. Another large randomized trial has proved that delayed use of ADT does not forestall CR. So what I said was accurate - those doctors who believe otherwise are wrong.
Is it possible that some kind of intermittent ADT may change this? Possible, but given the evidence, it is not likely. At any rate, since it is unknown what such a protocol might be, it would be foolhardy for any patient to believe that he has the answer. It is not something that should be done outside of a carefully controlled clinical trial.
"Another large randomized trial has proved that delayed use of ADT does not forestall CR. "
What has that got to do with a supposition that cyclical treatment might be of benefit? Many proponents of IADT are also proponents of early ADT.
The subset analysis showed that survival is lower for the subset of men with low metastatic burden who used THAT FORM of intermittent therapy. What the same trial proved is that the men who were randomized to THAT FORM of intermittent therapy failed ADT at exactly the same time as men randomized to continuous therapy. Only the doctors who believed THAT form would work were proven wrong.
But even if they were wrong, a study showing non-superiority can also be showing non-inferiority. Why would numerous papers suggest "IADT appeared feasible and worthy of further investigation" if it was clearly inferior? It is NOT clearly inferior, and it DOES have clear QoL benefits (not to mention potential health benefits as regards bone loss, metabolic morbidity, etc.)
So I'm not sure what might be "foolhardy" here. Certainly it would be foolhardy for a patient to think HE definitively has "the answer" when most researchers and doctors admit they DON'T have definitive answers. It is certainly not foolhardy to consider variations of an option that that has not been shown to provide inferior survival outcomes but that HAS been shown to improve QoL.
And intermittent ADT is something that HAS been commonly done "outside of carefully controlled clinical trials" for several decades, by esteemed researchers and clinicians like Nicholas Bruchovsky.
What Gatenby has postulated is that evolutionary population mechanisms of resistance could and should apply to cancer cells in ways similar to a wide range of other ecosystems. Why wouldn't they?
It should be noted that in ADT in general, we are talking about a FAILED therapy. They realized back in the 1940s that castration could ease symptoms or delay progression, but failed as cure. Not only does it fail, but men then often progress to have cancers increasingly resistant to further treatment. It seems logical to explore mechanisms that might further lengthen time to resistance, even if exact details of optimal implementation remain elusive and inconclusive.
So it seems silly to put men in the leaky lifeboat of CADT, tell them that boat probably WILL sink, and tell them they are fools for thinking about hopping into the different lifeboat of IADT that also probably WILL sink too. "Stay in THIS sinking boat, because we have more experience in watching this kind of boat sink."
You seem locked in the paradigm that "proven extended survival" is the highest possible value of treatment options. You are also locked in the paradigm that we should only do what we best know. But the reason we best know it is because it is mostly what we do.
That which we "best know" may not be that which is "best" for every individual, especially if they have a hierarchy of values that is different from yours or their doctor's. Maybe they just prefer the seats or the view from the other lifeboat?
"What has that got to do with a supposition that cyclical treatment might be of benefit? "
Because proponents of both iADT and delayed treatment hypothesized that longer duration of ADT exert selective pressure on the evolution of castrate-resistant cancer cells. That is almost certainly true, but completely ignores the opposing force - a smaller cancer load sets progression back even further. There is now a lot of evidence for this, not least of which is that early use of chemo or combined hormonal therapy delays progression and increases survival. ADT is not a "failed therapy" - it has been proven, in the right combinations, to extend survival.
After that landmark trial, many top MOs were more reticent to use iADT. Patients often pressure their MOs to do it because they want a break. What the trial showed is that QOL was eventually the same with cADT or iADT.
Bruchovsky was an early innovator in this and in mathematical modeling. I believe his opinions have evolved as more data came in. All the mathematical models in the world (and I have followed them for many years) only serve as hypotheses for testing. It is empirical data not theoretical data that we rely upon. That's why it's foolhardy to ignore empirical data. Without it, we may not understand whether some therapy works or not. You may believe that you have the way iADT could work better, but until there is a clinical trial, it is just your belief.
Metastatic prostate cancer is currently incurable by today's medical technology. I hope that won't always be true, but for now, it is. I encourage patients to enter clinical trials consistently. I am not "locked" into anything. I follow the results of clinical trials avidly, and my understanding has changed over the years. In fact, I started as a big proponent of iADT making exactly the same arguments you are making, until I was forced by empirical data to change my beliefs. I hope that someone comes up with an iADT protocol that increases time to CR, extends survival, and provides better QOL. I am hopeful that innovations like BAT, application of individualized mathematical models, or heavy initial use of hormonals (as Strum advocates) will prove to be useful. Until we know more, innovative iADT protocols like those should be left to clinical trials.
"a smaller cancer load sets progression back even further"
Exactly why Bob Liebowitz proposed an EARLY and multi-pronged attack with ADT and chemo and anti-angiogenics. But once the cancer load is pounded down with initial treatment, extended treatment can mean evolving resistance and a resumption of the growth of cancer-load. Which is why he said a goal of therapy should be to make attempts to AVOID resistance, by not embracing "Lupron-for-life" as a given.
There is nothing inconsistent with proposing early ADT and then also proposing it not be of life-long duration. Those two views can mesh quite well.
" ADT has been proven to extend survival "
Sure. And so has treading water. I am not knocking hormonal therapy by calling it a "failure." But "fail"is exactly the word my MO used when she told me what would happen with the first course of ADT. As you say, metastatic prostate cancer is currently incurable with ADT. While RP and RT are said to be potentially curative, hormonal therapy is not. It is in THAT context that ADT fails, by definition.
For most of us, ADT is essentially a medical variant of treading water. So far as reaching dry land is concerned, treading water "fails." But it sure beats drowning. That's why I'm doing hormonal therapy. It makes more sense to me than RP or RT even for localized PC.
What makes ADT a problematic therapy in another sense is that it is, in itself, the imposition of another disease on the patient. And hypogonadism is a serious disease with serious consequences. So the goal of much investigation has been, in what ways can we potentially make this therapy less of a failure (or "more successful" if your prefer), both through 1) working better to prolong life , and 2) addressing severe symptoms of hypoganadism.
"until there is a clinical trial, it is just your belief"
And even AFTER the clinical trial, it will STILL just be a belief, because it is impossible for a single clinical trial to disprove various permutations of iADT. Mathematical modeling cannot "prove" which models might best work for which men, any more than they can "prove" the actual contagion outcomes of a viral pandemic. They are only tools, to show possibilities.
There is no claim by anyone that ANY form of iADT is better than cADT for EVERY man. The claim is simply that some versions might be better, for some men, than Lupron-for-life. For a man to try a version for himself, is that then a leap of faith? Sure. Nobody is denying that.
"What the trial showed is that QOL was eventually the same with cADT or iADT."
Except that QoL is an entirely an individual and subjective thing that can not truly be measured. Even if you CAN measure a man's ability to get an erection or to do certain things or to not be fatigued , you cannot measure how much he CARES about these things. (And surveys that purport to measure "caring" really cannot do so in an objective manner.)
And even if "eventually" it is going to be the same, that entirely misses the point. The point for some is a higher QoL early on, when they are at a younger age. Again, this is entirely subjective. No clinical study can account for individual variations in value hierarchies. Balancing "to live for today" with "to sacrifice for tomorrow" cannot be framed within a context of measurements and stats.
" iADT protocols like those should be left to clinical trials"
Are you telling doctors how to do their jobs? Telling them what treatments they should and should not pursue with patients? That seems a bit presumptuous.
The fact is, most clinical trials are only open to men who have achieved a certain level of treatment failure or are at a specific stage of disease or of treatment. Will a man with no prior treatment be accepted into a BAT trial? No. So, many of these trials that might show a benefit to avoiding cADT will consist mostly of men who already endured cADT. How would that ever confirm a potential benefit of BAT as an initial therapy? For now, the potential for success has to be seen in individual, anecdotal cases.
Your use of the word "should" suggests that you ARE "locked into" a certain way of thinking. You are locked into being forced by empirical data to change beliefs and to assert our actions should proceed as if the data is conclusive, when a reasonable person might see the existing data as inconclusive. Your choice to be ENTIRELY data-driven is your choice. To suggest everyone "should" also be that way is to suggest your subjective value-hierarchy is somehow an objective reality. It's not.
Sorry - I don't have time to read long posts today. I'll try to get to it later this week.
I am watching this exchange and learning what I do not know. Thanks for presenting the information. It is valuable and I appreciate the time that you’re taking to present your opinions and thoughtful analysis.
Thanks. Just trying to make the point that there are more factors to consider beyond the statistical analyses, and that how men weigh these is a subjective thing. Doctors are nearly ALWAYS going to present a case for the intervention that has some "median survival" stats backing in, but those stats can be misleading when applied to individuals with differing goals and values.
The traditional view is that men with mets should get continuous ADT.
Do you know what your baseline testosterone [T] is? With intermittent ADT [IADT], T recovery is slow (unless one supplements with T) & often does not reach the previous high. For many men baseline T is not a lot higher than the cutoff for hypogonadism - 350 ng/dL.
The final ADT injection does not suddenly stop working. Dr. Freedland has said that the vacation period is largely a continuation of ADT. On the other hand, if PSA behaves once T goes above 350 ng/dL, one can experience a meaningful vacation. It's certainly worth a try IMO. (Don't be discouraged by PSA increases while T is <350 ng/dL.)
-Patrick
My baseline T is 265 tested prior to any treatment. T level will be tested again next week. I’m a little confused where you say “once T goes above 350 ng/dL, one can experience a meaningful vacation.” I thought the objective was to get T level as low as possible, along with PSA, before considering iADT.
With a baseline of 265 (& a cutoff for hypogonadism of 350 ng/dL), you will be in a castrate/semi-castrate state during your vacation.
By meaningful vacation I meant a period with adequate T during the IADT off-phase.
-Patrick
Got it. When you say vacation you mean from low T which should occur when ADT is withdrawn. I guess I’ve been at the low end of the the T range prior to Pca and didn’t know it. Which may explain why I’ve always found it difficult to gain muscle mass even when I visited the gym three time a week for years. It appears I’ve been in hypogonadism all my life. Hence no kids after 43 years of marriage. If I understand you correctly it doesn’t look like I would benefit from iADT all that much.
The SOC parrots are singing very old song about ADT...lot of water has flown iunder the bridge in last 10 years and Intermittent ADT is now SOC in Canada and China.
Intermittent ADT CAN be used in metastatic situation provided mets are limited to bones.
The criteria for IADT in cases of metastatic PCa is as follows:
(1) your PSA should have reached to 0.2 or lower within first year of ADT.
(2) Your total Testosterone should have reached to less than 20 in first year.
(3) You do not have visceral mets or significant bone pain.
(4) You do not have Neuroendocrine, ductal, small cell or transitional cell variety of PCa.
IF you meet all these 4 criteria..you can certainly go for intermittent ADT with close monitoring of PSA and Testo.
Intermittent ADT not only reduces side effects. especially Heart failure and bone fractures.
Intermittent ADT also keeps PCa cells androgen sensitive for long time and prevents early castration resistance.
I am in 7th months of first OFF period of Intermittent ADT...PSA is still 0.2 and Total T is still 5. My last lupron inj was on DEC04, 2019. (BTW my Nadir T was 1 six months ago) so it is creeping up slowly.
If off period is long..your cancer specific survival is long...one study says 40 weeks or more of off period is good sign of prolonged survival.
So ignore the old SOC songs..its a new world order and Intermittent ADT is the wave of the future. Dr Laurence Klotz have posted last week on PubMed " The history of Intermittent androgen deprivation therapy-A canadian story" (canadian urological association)
A brief, very informative 3 page summary. Worth reading.
NOTE: Never forget that very strong long term suppression of T up regulates Androgen receptor...causing faster castration resistance. The stem cells start multiplying and creating androgen resistant cells. Keep androgen sensitivity as long as possible to live longer.
LearnAll: Your 4 criteria and 3 following sentences are clear and important. Can you provide some back-up validation sources for these criteria and iADT benefits? I have no expertise or opinion on this subject. But I think Stevana's question is a good one.
This information about criteria for metastatic PCa and IADT is from a research paper whose lead author is Dr Laurence Klotz . He is one of the pioneers of Intermittent ADT. He is based in Canada. Exact paper I will have to pull from my pile of 40 studies about IADT. Also try to read Dr Zingsong Zhang's recently published papers about IADT. He is researcher at Moffit ccancer center ,Tampa. Fascinating mathematical model about PSA dynamics and increasing time to castration resistance.
I’ll be receiving my 3rd firmagon infusion next week. That is the extent of my treatment thus far. My PSA did drop from 7.8 to 1.58 after my initial infusion. My testosterone was 265 prior to beginning treatment and will be tested again next week. I’m high metastatic but not visceral. From what I gather I’m too early in the game to be thinking about iADT. As for item 4 in your list, I’m not sure if I have Neuroendocrine, ductal, small cell or transitional cell variety of PCa. My MO has not discussed that with me.
There seems to be opposing camps on the benefits of iADT vs. cADT. Next month I start a clinical trial of docetaxel +Opdivo for six three-week cycles at which point the docetaxel is stopped and I continue on with Opdivo for and additional six cycles. That should put me around next spring when my participation in the trial ends. At that point I plan to explore with my doctor the possibility of iADT.
Thanks to all for their candid input.
Agree. You have to wait till your PSA drops to 0.2 and testo drops below 20. If you had biopsy of prostate, it will show if you have plain acinar adenocarcinoma or a variant such as small cell ,ductal, neuroendocrine.
Checked my biopsy report. It indicates adenocarcinoma with no further description. Not sure about that distinction from the others you mentioned.
Good. So you most likely have plain adenocarcinoma which over 92% people have.
If you test blood for LDH, Chromogranin A and both come in normal range, most likely you do not have Neuroendocrine type. Its not 100% because only biopsy can tell 100%. Whats your Gleason grade?
First , thank you for all the information shared with us. I am a little bit confused. Could you give me more clarification? My dad was diagnosed with PC last december, PSA12, gleason 9, all 12 cores positive. He did pelvic scan, chest scan, bon scan, and finally pet scan . So no metastises. he started firmagon by the end of December and his PSA on January 30 was from 12 to 0.9. the second injection PSa was 0.4. The doctor switched firmagon with Eligard on March. His PSA was 0.2 and level of T 10 . The doctor suggested my dad : EBRT + HDR+ 2 years on ADT. He will start on July. Do you think is it a strong treatement? my dad is 76. He is healthy so far, very activ. The only problem is the hot flaches. Thank you for your time.
First of all , fortunately he is responding really well to treatment as evidenced by PSA 0.2 (called as undetectable by many) and T level 10.
He does not have metastases. Good ! I do not understand why he needs EBRT+HDR at this point when he does not even have a met...leave aside a painful met.
As far as ADT for 2 years...its just a routine thing doctors do without thinking much about uniqueness of each case. He might not require full 2 years.
To me it sounds over-treatment..specially EBRT+HDR .I will accept Eligard and monitor three things closely..PSA, Total T and ALP.
Based on what data we get in next few months , length of Eligard should be decided.
I think doctor may be overly cautious if there is strong family history of prostate cancer.
I had EBRT + 2 years of ADT with Eligard as primary treatment for Gleason 9, inoperable, age 62, Psa at 6.
Psa nadir was 0.08. But I paused ADT to see if that primary treatment worked, and of course it did not, and within 6 months, Psa was 8.8, and I was forced back onto ADT. Next Psa nadir was 0.22, then it slowly rose. I did have another short intermission, but testosterone was slow to come back, and Psa soon rose again to 6, so ADT started again and nadir was 0.4 with Casodex added and salvation RT and I've had to stay with ADT ever since, and have had Zytiga than gave 8 mths more, with a nadir of 2.0. Chemo allowed Psa to rise 4 times to 50, and Lu177 reduced Pca from 25 to 0.32 in 12 months but now Psa is 14 and after Ztandi has stopped working. ADT continues with monthly Lucrin.
I am so fit and healthy now at 73 without testosterone that during last 4 years, not one man over 60 has overtaken me on my cycle rides around Canberra, where I do 200km+ a week regularly. So I don't need testosterone.
I'll get more Lu177 this year, maybe olaparib if blood analysis soon shows it may work.
Last week's 7th PsMa scans showed I have no soft tissue mets, but just have bone mets. I begin more treatment with Lu177 during July, not long. ADT continues, maybe not even needed because by now my balls have atrophied so much they could not ever begin to make testosterone, so ADT may be useless, but docs won't let me stop ADT in case T increases and Pca becomes more a threat than it already is.
My attitude to staying fit with 3 fast long rides per week on bike seems to have insulated me from becoming weak and feeble as I get older, without T.
Patrick Turner.
Congrats to you Patrick-Turner! I’m 68 and 20 pounds over weight. Here in the Tampa Bay Florida area bike riding is somewhat a hazardous sport with few long range trails and where the almighty combustible engine rules. I‘ll have to find an alternative.
I do respect what you are doing. I too have a Gleason 9 (advanced Pca with multiple mets), but currently asymptomatic. It looks like a healthy exercise regimen is another tool, in addition to the drug treatments, that we can use to extend our time on the planet. Your words are inspiring to get going. Thank you.
Hi Stevana,
If I did not cycle, I'd walk, were it not for a damaged ankle that is painful to walk on due a minor motorcycle prang at age 19. Ankle was fine during 26 years in building trades, but gradually got so bad I loathed walking more than 1km, but I could and still can cycle 80km without pain. Walking is easier than running and not so hard on the body and bones, and a brisk walk for 3 hours gives same CV benefits as 3 hours on a bike, plus bone density is improved. The bigger the hills you walk on, the greater the benefits, even though its slower. But by 1995, I also had such bad knees when walking I was forced quit the building trades. I had knee genes that just did not ensure long time of knee use. But in early 2017, I had both knee joints replaced, so that made big improvement on how far I could walk, and it cured knee pain, but ankle still stops me walking. At 30, I used to like walking the local bush trails here up some steel hill tracks well away from roads, often with a GF. But by 47, such walks were uncomfortable, and later such walks were impossible, and walking on loose sand is impossible, unless I keep boots on and tightly laced up.
So if your knees and hips and ankles are not worn out or damaged, then walking is the best simple alternative to cycling. 11 hours a week walking probably gives similar benefits as cycling 11 hours a week, which is what I am doing now.
I have countless bone mets, and no soft tissue mets were seen in last PsMa scan, but Psa is only 14, but rising fast, so I need more Lu177.
Its possible Lu177 kills mainly bigger bone mets and does not get into kill the bigger
number of small bone mets so gradually the number of mets grows and can be kept small, but I can only have two repeat lots of Lu177 and no more. At that point I have to confront very many bone mets all small, which then cause very rapid Psa increase.
so I'll take PARP inhibitors if that might work, and maybe Ra223, possibly some Ac225 added to Lu177, and whatever else docs think may work. Xtandi is probably now doing nothing to stop Pca growth hence Psa is rising fast, but docs want me to keep taking Xtandi because it may be making my Pca express more PsMa so make Lu177 more effective because PsMa expression is needed to attract Ga68 in diagnostic scans and Lu177 in therapy.
Before theranostics began with nuclides, once bone mets were seen in CT scans the survival time was 5 years for only 5% of men. So having Pca in bones is serious illness, even though we may feel well.
Below, hansjd mentions I could have Veyonda added time I have Lu177, and Veyonda is NOX66, aka Idronoxil, and I don't know how it works exactly, but I will be talking to my Doc at Theranostics Australia in a week and see what he says about it, and see if "compassionate use" is allowed or possible, and of course compassionate use means its a free sample from drug company Naxopharm, who are able to monitor results in men to get an idea if it works well or not. Veyonda is given where RT doses are small, but what is meant by small? Is a dose of 8micrograms of Lu177 a small dose of RT, or a large dose? To me is seems its a large dose right at sites where Lu177 gathers to kill a bone met, and its a targeted high dose that can't be delivered by beam radiation without causing damage to healthy tissues in beam paths of X-rays as occurs in EBRT, IMRT, SBRT etc.
I had to install ZOOM to my laptop to talk to docs at TA who have stopped use of Skype. But I found Skype was OK, andif I clicked in the Skype icon, I could begin a video call.
But a ZOOM icon won't install on my laptop and I have to make video call to TA, so I still don't know how to start its use. TA docs used to call me at pre-arranged time, but now I am expected to call them at prearranged time and maybe wait in a queue, at my expense, and not doctors' expense. I'll try to see an IT expert to help make sure ZOOM will work. I got an account and password established. I don't have a mobile phone.
Its a nice sunny morning here, but we had frost and -3C, and +13C max is forecast, and its still too cold to get anything done in work shed yet.
Patrick Turner.
I visited Australia three years ago - Cairns, GBR, Alice Springs, the big red rock and Sidney. Loved all of it. You have a remarkable country. Amazing thing - I never saw a roo on the wild, but that’s what you get on a three week drive-by tour. I’m not complaining. I’d go back in a minute if not for this god-awful virus. Anyway, I’m not sure I’d be welcome given our world record numbers in the US. Thanks for sharing your tips on walking. It will take me a while to work up to three hours a day. Hang in there. Your fighting the good fight, both disease-wise and exercise-wise, and it appears you’re winning the battle thus far on both fronts. I wish I could help you with the Zoom, but I’m helpless on that count. My wife set it up for me, but I couldn’t tell you how. Good luck and continued good health mate!
Some say we have a lovable country, and we wonder why because nobody can live in about 90% of its area, which is desert. I see wild roos all the time when I am out and about just cycling across town and there are large areas of nature zones here so there's food for roos to eat when drought has reduced food elsewhere. I have to slow down because they don't understand cars or cyclists and can hop out right in front.
Mobs of 20,000 roos have been seen out west in years of good rains and numbers build up, and they push down fences on farms and ruin crops, so farmers don't much like roos. Farmers are well armed to deal with roos, feral pigs, dogs, cats, rabbits, foxes, horses, camels, nasty neighbors, and politicians imposing horrid policies.
Drivers don't like then either because they graze by roadsides at night, and they can jump in front of a car, and worst case is to have a roo come over the bonnet and through the windscreen into the car, then kick around in its agony, not a great experience of wild life. So high 4 wheel drive vehicles are needed for those driving
a lot on rural roads but stray live stock also pose a risk. Culling efforts are continuing in and around Canberra where numbers build up to being too high.
Shooters and panel beaters do well with roos. Sometimes roo meat is in shops, and its very good meat.
Visitors from overseas will be welcome again I am sure when C19 ceases to be a threat to our population where only about 102 died so far, but that means we have no herd immunity.
I would understand that nobody is going to easily adopt the habit of walking 3 hours per day, and even if they do it won't stop Pca. But it will make a man less likely to suffer side effects of EBRT, ADT, and all the other things docs to to reduce our QOL.
What about 1/2 an hour a day? in 7 days, you will do 3.5 hours, and that's hugely better than not walking anywhere except from a TV chair to a toilet or dinner table, and with a mind dominated by doom and gloom.
If I can't start ZOOM, I'll take laptop to a young IT expert, who probably would get ZOOM working while asleep, while dreaming of sex :-).
I sometimes think I am in Deep Poo with Pca now. But Psa is only 14, and I can still ride a bike, and Psa is not 140, or 1,400, where my body would be asking my mind for an eternal rest. I know what its like to have just a slight bit of pain from Pca, with Psa over 25, yet cycle 300km in some weeks. The doctor at Theranostics Australia is a nice man I like, and my oncologist is a good guy, and both have tricks up their sleeves to make me last a bit longer.
Its going to rain a bit today. But only 7mm. Less than a dingo piss 
Patrick Turner.
Your roo over-population sounds quite similarly to what the US west cattle ranchers deal with in increasing wolf populations encroaching on their herds. The ranchers almost killed off the entire western wolf populations until the government stepped in and gave them protected species status and safe haven in the nation parks. The wolf packs have so successfully rebounded that the are now back to their old tricks and are once again taking easy-pickings of beef cattle on the range lands that abut the parks. It’s a continuous battle for the ranchers against a magnificent animal that is highly adaptive.
On my exercise front, I have never been one to be a couch potato. We have a swimming pool here at the house and I live in a gated community with about two miles worth of paved streets so I don’t lack for exercise opportunities. I also used to visit our local gym at least twice a week for weight training until the virus shut them all down, which was around the time I got my diagnosis. They just reopened them, but I really don’t fell safe visiting there yet. My downfall has been how much the ADT has zapped my energy. I know exercise is the best way to combat that, so more regular workouts will have to commence without further delay. Right now we are in our summer months here with temps reaching mid-90s F on a daily basis so my outdoor activities must be in the early mornings or late evenings. Our heat index is well over 100 with the humidity we get here in west coast central Florida.
I hear you about your decease status. I’m sure it can get you down from time to time. But it sounds like you’ve found the path to keep your body strong enough to keep up the fight. That’s why I plan to emulate your routine as far as the level of activity, as least as closely as I can. All things aside, I’m a true believer that you can exercise yourself to good health. It just takes discipline. Something you have and I need to get. Right now I need to drop 20 pounds. I’ve done it before. I just hope that the ADT doesn’t get in my way. I start chemo/immunotherapy in about four weeks. I’m expecting that will knock a few pounds off especially if I can maintain a regular exercise regimen.
Best of luck to you and continued success in your battle.
I here you clearly about wolves and have witnessed the re-wilding of big areas in Europe. We don't have wolves, but do have a "native" dog, the dingo, which is a leaner smaller animal than a wolf, and very cunning. But before anyone worries about dingos increasing, the worry is about domesticated dogs that have come from human settlement, and a gang of a few might savage a big flock of sheep and kill many just for enjoyment. So its the carelessness of dog owners that has led to large wild dog populations that act much worse than the native dingo. Pigs, horses, rabbits, foxes and camels are all at big pest levels out west, and there's plenty to shoot out there.
The landscape of most of inner Australia is bone dry most of the time but it blooms spectacularly if feed from effects of feral animals. A few farmers have successfully fenced off their properties to such damaging introduced species and those properties become an oasis of greenery, but they also had to keep the stock numbers low, and reason for last drought being so bad for so many was over stocking.
Farming just does not pay very well any more as rainfalls have reduced and average temperatures rise.
At no time did ADT zap my energy. I kept on cycling though it all, but my speed reduced and for first 2 years I could get it up OK but pleasure went down a bit. Instead of thinking about sex every 5 minutes, I thought about it every 15.
After a pause of 6 months full sexuality and bike speed returned, but Psa zoomed up fast. Then it took another 2 years on ADT to have complete sexual capability and pleasure fade down to zero, and in 2015, Rodger filled with fibroids and would not erect straight, but like a brass garden tap pointing down to ground. Thus I truly became dissapointed due to having to save mu life. I cycled on and on, and continued work big weeks. and hot flushes never worried me, and weight remained OK.
I learnt to eat better, and the cycling used surplus calories.
I cycled about average 90km a week for 5 chemo cycles which were 3 weeks long, so in first week I did about 50km, second week about 100, and third week about 120km, so about 270km for each 3 weeks. I could ride quite well to get to hospital, take the chemo infusion, and ride home. I did all manner of things in my craft workshop and continued seeing friends and eating quite well.
Walking a few km a day would have also been enough for me, but I have a bad ankle. I am lucky to live in a car dominated society where Govt has included good bike lanes on roads and many tar sealed cycle tracks off road.
I also have a small pool I use in summer.
Take care, look after yourself, and you may find the world wants to help....
Patrick Turner.
Amen brother. Thanks for the inspiration.
Hi Patrick
When you have Lu 177 again in July, have you considered asking to have Veyonda with it? Theranostics now has an agreement with Noxopharm to allow compassionate use of Veyonda with Lu 177 for CRPC patients. Seems like a great combination.
After my loading dose of firmagon, I stayed on it for a few months. It left me with swelling and soreness for days after.
Psychologically though, you are continuously wrapped up in the issue. I swapped to a three monthly degarelix injection, which I cope with better, and It allows me to enjoy life more as I don’t get so hung up, with less hospitable visits.
Did not know a 3 month regimen of degarelix was available. I will ask my MO about changing to it. I agree, the abdominal shot is painful for at least 7 days in my case. I find it difficult to bend at the waist to put on shoes. Having to suffer that on a quarterly rather than monthly basis would be a great improvement. I assume you’re in the U.S. and that a quarterly degarelix shot is available here? Thanks for the tip.
In UK. 6 mth standard here but went for 3 mth. Paranoid in case nurse administered incorrectly or efficacy wore out before half year ended.
As long as testosterone is kept switched off and pituitary gland kept in check, that’s all we need regarding this aspect of our disease treatment.
Very interesting to hear that 3 and 6 monthly Firmagon is available in the UK. I'm in Australia and I contacted Ferring about the possibility of a 3 month Firmagon about 18 months ago, because I saw it was being used in Japan. I was told it was not available here and there were no plans to make it available.
Maybe things have changed. Time to check again, I guess. I agree 3 monthly would be an easier option, not because of the side effects especially, as I don't find them bad, but because of convenience, especially if you're travelling. Not that we're doing a lot of that with COVID -19 at the moment.
Hi Hansjd
I might be wrong, but I think the firmagon is only available on a four weekly basis in the uk.
I changed over to 3 monthly degarelix shot to ease anxiety reduced soreness.
Each person should do what they think is best for them. I sometimes wonder whether some of the men who pursue intermittent ADT are simply trying to go back to their pre-cancer lives. Continuous ADT to fight the cancer makes sense to me and my oncologist. I just accept that I can't go back in time. I will never again have the strength and endurance that I used to have. I will never again get a solid 8 hour sleep at night. I will never again have the libido that I used to have. I have accepted that and made adjustments to my new normal life. I retired sooner than I expected. I nap when I need to. Things take longer to do than they used to. Lots of people around the world face life changing events and they just adapt and carry on.
As I explained to my Doctor, for me, iADT was never about extending survival or such, it was simply for 2 reasons, to see if I just maybe, possibly might be “cured” and Hopefully, a return to some state of what I once was. Now 7 months into my vacation, I feel like I once did, have lost the 25 pounds I had gained and the fatigue and hot flashes are gone. Yet I still can’t have sex, even though libido has returned to some extent. That was the “like it once was” major goal. So now I am not sure if it was better to miss sex because I could have cared less about it or to not be able to have sex when now I want to and can’t. A big disappointment. But still worth it I suppose for now I am better prepared for the next treatment. I read the experiences of those not doing as well, and think how thoughtless of me to not to be appreciative of my current state and just enjoy it as it is. But I’m not there yet. But I know it’s where I need to be.
You make such an important point - the trade off between aggressive treatment and Qol. When I was first diagnosed in mid-March of this year with advanced, aggressive, metastatic Pca , really at the extreme end of the scale for an initial diagnosis, I asked my first-opinion RO after he explained he could note use proton therapy on me because of my advance state and had outlined my possible options, what would happen if I elected to do nothing? He said without hesitation that I would likely be dead in 18 - 24 months. Naturally, I moved on to explore other options. However, now that I have a clearer picture of my journey ahead I’m not that optimistic. It seems the name of the game is to extend your life in hope that that magical cure can be found. But when you look at Qol (not just for me, but for my wife) it makes you wonder if it’s worth it. Please understand I’m at the beginning of my journey. My only treatment thus far has been ADT (degarelix) for three months. Docetaxel + Opdivo , as part of a clinical trial, lie ahead. I’m still prepared to put up a fight but I’m waning while still in the starting gate. I’ve been an optimistic person all my life but at 68 this has really knocked me for a loop. I really worry how I will fair when it starts getting really tough. I only hope I can be as brave and optimistic as many of you have shown.
How's them for answers?
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 06/18/2020 7:10 PM DST
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