First Follow Up on MyTestosterone Trial - Advanced Prostate...

Advanced Prostate Cancer

12,623 members15,302 posts

First Follow Up on MyTestosterone Trial

MateoBeach
MateoBeach

Background: I am T3c, N+, M0 HSPC. Dx in 2007 with Gleason 4+3. RARP neg, Margin positive w ECE and SVI on left. 13 nodes negative and scans clear. Elected 6 cycles of early Docetaxel, then SRT to prostate bed only, all in 2007. Intolerant/allergic to leuprolide so I did alternative ADT after BCR with bicalutamide 50mg plus dutasteride for 5 years before it failed. In 2019 I had Ga-68-PSMA scan showing only two PLNs in pelvis on left side. No activity elsewhere. So I did hemipelvis IMRT, 64 Gy with boost to the 2 nodes. Adjuvant ADT for 6 months (Firmagon plus Estradiol patches.) For over a year after completing this my PSA slowly decreased down to 0.080 (from 0.28) But my testosterone did not recover above around 100.

I was experiencing the full range of hypogonadism symptoms: ED with zero libido; decreased bone density (on Prolia); decreased muscle and lean body mass; cannot put on muscle despite heavy weight workouts with trainer; poor exercise recovery; Mood lability with depression, anxiety and irritability; fatigue and lethargy; decreased mental focus and concentration; insomnia with early morning waking. The only hypogonadal symptom I did not have was increased body fat, thanks to my keto diet and OMAD fasting.

For several months I reviewed ALL of the peer reviewed research on testosterone use in prostate cancer as well as the BAT trials. I decided to do a personal trial of high dose testosterone for one month and follow the results with my PSA levels. Those who will respond favorably or unfavorably to BAT protocols cannot be predicted. But they can be identified. Nearly universal is a moderate increase in PSA when testosterone or first BAT cycle is started. Favorable responders will have a subsequent decrease when the testosterone is stopped (due to concomitant ADT). Poor responders have progressive increases in PSA without stabilization. These men must stop the BAT and are dropped from the trials.

It took me several months of pleading with my MO and barraging him with the clinical literature, as well as getting several consults with urologists familiar with testosterone in PC. These included Tomazs Beer at OHSU and Michael Schweizer at Seattle SCCA (notable BAT researcher). Finally got the nod despite the usual cautions. I wrote and signed an informed consent document for my chart.

March 1st I had my first dose of Testosterone: 200mg of T cypionate IM. In 2 days I felt: TERRIFIC! My energy and attitude was restored. Libido returned. My head clear and mood bright. It was astonishing how positive and immediate the results were. I had two more doses at 2 week intervals to make approximately 6 weeks total on the testosterone cycle. ( I did not opt for the 2 weeks of High T and 2 weeks of castrate as per the BAT protocols because I am hormone sensitive and my cancer has been indolent and slow growing. So the rapid cycling did not seem to fit my cancers growth/reproduction rate.)

Last Wednesday, 10 days after my last of the 3 injections my testosterone level was 801 nG/dL (12.6 free T). And my PSA was 0.180 (up from 0.080) before the testosterone cycle. I count this as the expected "moderate" rise that is expected in the best of responders. Now I will do the 2nd have of my cycle test program. No more testosterone for 2 to 3 more months with monthly PSA tests. I am not doing ADT this time and will see how my T levels decline naturally.

My intention is to consider doing a one month or 6 week cycle of Testosterone perhaps 3 or 4 times per year if my numbers stay stable. Enough to keep the hypogonadism in check without allowing my PCA to run wild. I am only reporting on my own experience so far with a treatment that is unproven in my clinical status. This is being done outside of a clinical trial but modeled on modified protocols being used in BAT trials currently underway. I make no claims for it and do not advise others to do similar. So far I am very happy with my response.

70 Replies

No ADT? That is not modeled on any clinical trials that I know of. So this is NOT BAT. I think you missed the whole point - it is the cycling that may extend control.

Nalakrats
Nalakrats in reply to Tall_Allen

He agreed, with himself, that he was going rogue--gave his reasons--which I cannot comment on one way or the other. So lets see how he does!

Nal

Tall_Allen
Tall_Allen in reply to Nalakrats

How does he judge success? How does he judge failure? How does anyone judge "let's see how he does" without anything to compare it to?

Nalakrats
Nalakrats in reply to Tall_Allen

He is the Judge--he is not running a trial for anyone but himself!That's the point, of me not commenting one way or the other!

Tall_Allen
Tall_Allen in reply to Nalakrats

He is posting publicly- he is not doing it for himself, which would entail a public posting. By virtue of posting on a public forum, he is inviting comment. Whether you want to comment is up to you.

noahware
noahware in reply to Tall_Allen

He has no way to know how HIS very own PC would or wouldn't have progressed, under different treatment protocols. Nobody does. We can only observe how many others progress with various treatments and extrapolate likelihoods that our cancers will behave similarly. You are correct, this ability will not be available to him.

But he DOES have other things to judge:

" I felt: TERRIFIC! My energy and attitude was restored. Libido returned. My head clear and mood bright."

... versus...

"ED with zero libido; decreased bone density; decreased muscle and lean body mass; poor exercise recovery; mood lability with depression, anxiety and irritability; fatigue and lethargy; decreased mental focus and concentration; insomnia with early morning waking."

Doctors can define men SOLELY in terms of their cancer status, but many men will not do that to themselves. They weigh known costs and known benefits AND potential costs and potential benefits, of various treatment and non-treatment options, in terms of TOTAL health and QoL and not solely in terms of PC status.

Tall_Allen
Tall_Allen in reply to noahware

Here's an easy way to feel "TERRIFIC" in the short run - don't do any therapy. One feels terrific until one doesn't. Because we know the natural history of PC progression, we know that "feeling terrific" is temporary. He is hastening the deterioration of his QOL by excluding ADT.

kaptank
kaptank in reply to Tall_Allen

irrelevant

No. I’m just not including ADT in this first test cycle to my response. Note that I am HS and have a PSA that has decreased for over a year without ADT after my PLN RT to 0.080. If not now then when? Should I wait until I am Castrate resistant and with multiple mets and have failed multiple advanced treatments to give this a trial? No this is the opportune time. You, who are on TRT yourself, no doubt for QOL while hypogonadal, should know and respect that better than most.

I think true BAT makes a lot of theoretical sense, especially for mHSPC. But only if it is bipolar.

noahware
noahware in reply to Tall_Allen

"He is hastening the deterioration of his QOL by excluding ADT."

Are you referring to the man who is the actual subject of the thread, or to the non-existent person refusing any treatment at all? If the latter, then you should start a new thread on the dangers of "non-treatment" because this is a thread about different PC approaches WITH use of treatment .

(If you want to start a thread about "feeling terrific" there are LOTS of illegal drugs that work better than "not doing any therapy." Frankly, I spent most of my life "not doing any therapy" and that alone did not serve to make me feel terrific.)

I will add that various forms of non-treatment -- including delayed treatment, vacations from treatment, and intervals representing transitions between different treatments -- are not the same as "not doing any therapy."

maley2711
maley2711 in reply to Tall_Allen

Dumb me probably......but perhaps he is feeling that additional time would /will be of little value to him if living with all the problems of continuous ADT....he'd hope for at least a short period of MUCH improved QOL,a nd risk shorter life?

Tall_Allen
Tall_Allen in reply to maley2711

If that's his goal, that is not what he said. He is instead trying to rationalize it as a therapy, which cannot be justified by any of the data.

Currumpaw
Currumpaw in reply to Tall_Allen

Hey T_A!

You wrote--"He is hastening the deterioration of his QOL by excluding ADT."

He wrote--"I was experiencing the full range of hypogonadism symptoms: ED with zero libido; decreased bone density (on Prolia); decreased muscle and lean body mass; cannot put on muscle despite heavy weight workouts with trainer; poor exercise recovery; Mood lability with depression, anxiety and irritability; fatigue and lethargy; decreased mental focus and concentration; insomnia with early morning waking. The only hypogonadal symptom I did not have was increased body fat, thanks to my keto diet and OMAD fasting."

Let's focus on one sentence he wrote from the above paragraph that MateoBeach wrote--"Mood lability with depression, anxiety and irritability; fatigue and lethargy; decreased mental focus and concentration; insomnia with early morning waking. "

I don't believe that MateoBeach was at all happy with his quality of life. Sometimes a disease becomes not only a physical prison but also imprisons the spirit. he ha done what he felt he needed to do.

A link:

_________________________________________________________________________________________

Incidence and risk factors of suicide after a prostate ...

pubmed.ncbi.nlm.nih.gov/301...

__________________________________________________________________________________________

An excerpt from the link:

"Moreover, prostate cancer patients were at an increased risk of suicide among men aged 75 years or older (RR = 1.51, 95% CI: 1.04-2.18; P = 0.028; I2 = 91.5%) and treated with hormonal therapy (RR = 1.80, 95% CI: 1.54-2.12; P < 0.001; I2 = 0%). Furthermore, marital status, race, disease risk category, and socioeconomic status were not associated with increased suicide risk in men with prostate cancer."

Currumpaw

Tall_Allen
Tall_Allen in reply to Currumpaw

Hey Currumpaw- Intermittent ADT is a reasonable decision for a short-term gain in QOL. But one has to acknowledge that the gain doesn't last. Eventually metastases become painful and organ failure sets in. There are trade-offs that have to be acknowledged. And there is a harm in pretending that there are no trade-offs. Hiding one's head in the sand is not a good way of coming to terms with this disease.

Currumpaw
Currumpaw in reply to Tall_Allen

T_A,

I think he understands exactly what the risks are. It is his decision. MateoBeach--does not have his head in the sand. I will not try to manipulate him.

From MateoBeach's post:

"It took me several months of pleading with my MO and barraging him with the clinical literature, as well as getting several consults with urologists familiar with testosterone in PC. These included Tomazs Beer at OHSU and Michael Schweizer at Seattle SCCA (notable BAT researcher). Finally got the nod despite the usual cautions. I wrote and signed an informed consent document for my chart."

"I am only reporting on my own experience so far with a treatment that is unproven in my clinical status. This is being done outside of a clinical trial but modeled on modified protocols being used in BAT trials currently underway. I make no claims for it and do not advise others to do similar. So far I am very happy with my response."

Edit: MateoBeach wrote his own consent form, complete with signatures. I will respect MateoBeach's decision. His doctor did.

Currumpaw

Tall_Allen
Tall_Allen in reply to Currumpaw

Nice of you to speak for him. But he can speak for himself. I didn't read any acknowledgment of the risks, did you?

Currumpaw
Currumpaw in reply to Tall_Allen

T_A,

Do you want him to post the consent form he himself wrote and was accepted by his doctor? He has a right to make his own choices.

Why do you assume he doesn't know what he is doing? Would his oncologist risk his license?

People do have a right to make their own decisions including how their life might end.

_____________________________________________________________________________________________

8 States That Allow Euthanasia - Insider Monkey

insidermonkey.com/blog/8-st...

_____________________________________________________________________________________________

An excerpt:

May 26, 2020 · New Jersey is the latest state to have legalized assisted dying/suicide, with the law coming into effect on August 1, 2019, after four years of infighting among the lawmakers. Now, in New Jersey,

Happy Easter!

Currumpaw

Tall_Allen
Tall_Allen in reply to Currumpaw

Why do you imagine in your head that he has acknowledged the risks? He wrote that he is ignoring the advice of two eminent oncologists. As I said, he can speak for himself and doesn't need you to make up excuses for him. He clearly posted on a public forum to hear opinions. Why would you try to silence them? If you want to give him an "attaboy" based on what you know, who is stopping you?

I can tell you that the way all humans operate is that the emotional reactions come first and the justifications come later. Confirmation bias is how we roll. We accept anything that confirms our emotional beliefs and ignore everything that conflicts with what what we believe. This forum can be a powerful tool against confirmation bias.

Currumpaw
Currumpaw in reply to Tall_Allen

T_A,

"Why do you imagine in your head " ? You weren't saying that my intellect and thought processes are --obtuse were you? Or that MateoBeach, who seems to be quite an intelligent man, is unable to understand the risk he is taking--clearly stated--after conferences with his onco?

T_A it is Easter Day. Let it go and rejoice in the day. People are allowed to make their own decisions as for a disclaimer, MateoBeach included one with his post.

"I make no claims for it and do not advise others to do similar. So far I am very happy with my response."

The sun is out and that is it! Computer is off!

Currumpaw

Tall_Allen
Tall_Allen in reply to Currumpaw

I said clearly what I meant to say. I don't understand why you infer things I didn't say. It is counterproductive.

I agree that Mateo Beach is intelligent, but we all (including me) suffer from confirmation bias. The antidote is to let people express contrary opinions and "steel man" them. It helps no one when you put out straw man arguments.

noahware
noahware in reply to Tall_Allen

When he said he got all "the usual cautions" what do you suppose he was referring to?

And when he said he "reviewed ALL of the peer reviewed research on testosterone use in prostate cancer as well as the BAT trials" do you think he capitalized the word "all" to indicate that he reviewed everything EXCEPT the risks?

There is zero indication in his post that he is pretending that there are no trade-offs or hiding his head in the sand. (And if you want to assert that I may be hiding MY head in the sand, I can concede that is probably partly true... but even then, that doesn't mean I am unaware of the trade-offs involved in doing so!)

Tall_Allen
Tall_Allen in reply to noahware

There is zero indication in his post that he understood and acknowledged them either. Why do you suppose he posted this if not to get a "reality check?"

Stanny1
Stanny1 in reply to noahware

Thank you if I did not know any better i would say you have been reading my chart. Currently I have had blood tests done to see if I can go on testosterone treatment. If so I will give it a shot. Sick of living all the symptoms you mentioned.🙂🇦🇺

noahware
noahware in reply to Tall_Allen

Not sure of the need to point out it is not BAT. He explicitly stated it was not BAT, in saying, "I did not opt for the [cycling] as per the BAT protocols." I assume that is why the title of this post refers to T alone, and not to BAT.

Saying "modeled on modified protocols" is not the same as claiming it is modeled on BAT trials.

As for "missing the point" we might note that while cycling high and low T is certainly now the most common approach, the potential benefit of high-T is not limited to the effects of cycling. Huggins and others spoke of (and observed) the potential of high-T to delay PC progression without any reference to cycling.

Huggins: "Certain cancers are hormone-dependent and these cells die when supporting hormones are eliminated. Certain cancers succumb when large amounts of hormones are administered."

Huggins referred to the latter approach of high-T as "hormonal interference" therapy, as opposed to the former approach of "hormonal deprivation" via castration that had already become the norm for hormonal therapy. The high-T concept goes back over sixty years, while the more recent concept of BAT is modeled on combining the two therapies.

The problem, of course, remains the same today as it was six decades ago: exactly WHICH cancers succumb when large amounts of hormones are administered?

Tall_Allen
Tall_Allen in reply to noahware

You left out what he actually wrote: "but modeled on modified protocols being used in BAT trials currently underway." There is at least a theory behind bipolar androgen therapy. There is no justification for this protocol. I'm surprised Beers and Schweitzer would prescribe the testosterone for this. When Liebowitz does a similar thing, he makes his patients sign a release saying that he acknowledges this will kill him. (I've seen the release form). He has had no reported success with his protocol.

noahware
noahware in reply to Tall_Allen

You do understand what the word "modified" suggests, right? It suggests you take a BAT protocol and CHANGE it. Once changed, it is no longer a BAT protocol. So doing something modeled on the protocols of clinical trials is not exactly what he claimed.

The sentence you quote essentially says "modeled on protocols similar to, but not the same as, those being used in BAT trials currently underway."

Tall_Allen
Tall_Allen in reply to noahware

The B in BAT stands for Bipolar - do you understand that?

Tall_Allen
Tall_Allen in reply to noahware

You do not seem to understand the theory of cycling. You may wish to review the section titled "Why can't we just give continuous high doses of testosterone?" in the link below:

prostatecancer.news/2016/09...

There's no need to reinvent the wheel.

I do understand the theory behind cycling. As you can see from my prior posts on adaptive therapy and evolutionary dynamics. I suspect the BAT protocols are cycling too fast to optimally impact evolutionary dynamics in the reproductive cycles of advanced prostate cancer. Two weeks on and two weeks off is too fast to allow for population changes. Rather, PSADT should be taken into Consideration as a proxy for cellular reproduction cycles. And especially so for me with indolent and hormone sensitive PC off of ADT. I desire to avoid transformation to castrate resistance. This is my best guess to perhaps influence the population dynamics of various evolving PC cellSub populations with respect to AR status.

And as for respect. How about some?

Justfor_
Justfor_ in reply to MateoBeach

Call it UAT (for Unipolar) to evade nomenclature correctional remarks. To broad-minded people the interest is focused into your response to it and not in its abbreviated name. Waiting for your next installment.

noahware
noahware in reply to Tall_Allen

You wrote, on Liebowitz, "60% had PSA progression while on TRT, but few had metastatic progression in that time period. For most of those, discontinuing TRT reversed the PSA progression."

So we know that TRT is not great at treating PSA. You note most men did NOT have cancer progression, but failed to note the study said "a subset of men [about a third] were able to remain on TRT for several years without disease progression." (Better than ADT?) That was over four times the number of men who showed disease progression.

One linked study said, "Response to testosterone was extremely variable. None of the ten men in relapse experienced complete objective remission although one man, who was preterminal, developed a remarkable subjective and partial objective remission that lasted nearly a year. The authors conclude that the response to exogenous testosterone is variable and unpredictable and in certain patients in relapse may be of appreciable palliative value."

The other study concluded "Testosterone is a feasible and reasonably well tolerated therapy for men with early CRPC."

From all this, you conclude that "TRT alone doesn't seem to work." If by "work" you mean ALL the time, or that it cures an incurable disease, I don't think anybody expects that. What they expect is that it CAN be of help, for SOME men.

The studies you cite do not, to me, seem to fully explain why high-T alone MUST be avoided, and has benefit ONLY in cyclical application. (I certainly concede it has more POTENTIAL for a higher upside in BAT form, but that does not mean it has no other reasonable application.)

The argument seems to boil down to, the fact that it is not widely used is WHY it should never be used. But a failure to try things is not proof of failed efficacy. We are talking about studies whose total participation is measured in mere dozens of men.

Thanks for reporting your experience. No, its not BAT but a systematic exploration of supra T and trying to find the best protocol. Keep reporting. It is very useful.

Nalakrats
Nalakrats in reply to kaptank

Amen!

On the question of how it goes, then monthly PSA tests, bone specific alkaline phosphatase (just to check if anything is happening in your bones) and the occassional scan, preferably PSMA. My onco insists scan is the gold standard and he will not declare a treatment failed until it is evident on a scan.

kaptank
kaptank in reply to kaptank

Look for rising trends or any large spike. These are sign to get a scan. Oh - and make sure you control estradiol (E2) (arimidex or similar - Nal and Patrick have extensively discussed this and may want to chime in with desireable levels.) Important to keep in a natural but low state. Never zero. Supra T makes E2 go beserk and that is not good.

MateoBeach
MateoBeach in reply to kaptank

Agree. Will have another DCFPyL PSMA PET I’m the next six months. Thank you.

kaptank
kaptank in reply to MateoBeach

eggs-elent. You are way ahead of me. Do watch that E2 though. It is not a problem under castrate conditions but goes way high with high T levels. It is not so much of a problem for BAT as the spike is transient but taking T over time can put it in uncomfortable territory. Body builders who take sometimes 10 times the large amount you are taking over weeks are scrupulous about this. It is suspected E2 promotes PCa but even when you don't have PCa too much is bad.

Very best of luck.

Good luck!

Sounds like you thought it out. This is the time to do it. Try it out BEFORE you are at the point that you can't afford an error.

The worst that happens is that you try this, find out it doesn't work for you, your PSA goes up a little, and then you learn something and go from there.

On 09/2019 I started SPT after a 6-month E-ADT lead-in. My PSA held at zero. Scans were negative. Then my PSA slowly went up to 0.06. Now it has dropped to 0.027. I'm still on the SPT and if my PSA ever goes above 0.1 I'll need to look into other treatments (radiation, perhaps a short burst of zero T). But, at this time, my SOC MO doesn't think I should change a thing and the original predictions involved a painful return of cancer by 03/2019 (prediction was made by Mayo after RP in 12/2018).

QoL means different things to different people. In the end, we all need to do what we need to do.

kaptank
kaptank in reply to RSH1

Great news RSH. Don't sweat the PSA. I start to panic at 5 but a reliable uptrend is a good sign to check a scan. But PSA 0.1 is not a decision level.

Any body who has tried this sort of thing and failed should also write a report. The problem with reports like ours is there is a natural predisposition to only report when things are going well and we also need to know when things go pear shaped and how and why.

Congratulations.

RSH1
RSH1 in reply to kaptank

Thanks and I'll keep that in mind.Not many people like to admit failure. But if you try and don't succeed I don't view that as a failure. Failure is a lack of trying.

Anomalous
Anomalous in reply to RSH1

Or PSA can skyrocket and mets pop up like weeds. Not trying to discourage him, but that is a possibility. I’m eager to see what happens in this trial of one.

RSH1
RSH1 in reply to Anomalous

Very true, but if it starts at 0.18 and skyrockets 10x it only goes up to 1.8.If it starts at 2,000 there isn't as much relative headroom.

I am not trying to tell anyone to do this. But, in my case it was <0.01 going into it, and it stayed <0.01. After 6 months my SOC MO became a believer (for ME, she never said that it would work for everyone). I would have given it a shot if my PSA was 5,000 and I had bone mets so you can tell where I'm coming from.

Regardless, you need to do what you feel is right for you.

Anomalous wrote >>> "Or PSA can skyrocket and mets pop up like weeds. Not trying to discourage him, but that is a possibility. I’m eager to see what happens in this trial of one."

Possible anomaly here ??? >>>

2015 at almost 65yo told 5+5 GL10 confined right half

CASTRATION IMMEDIATELY

Cryoablation then 7 months later Keytruda + Opdivo + Yervoy injected in situ right half

1 MONTH LATER began ordered by doctor my bi-weekly Cypionate injections and continue (tomorrow next one)

QUALITY of LIFE IS PARAMOUNT not QUANTITY. 5 YEARS ON TESTOSTERONE and no mets yet. TIME WILL TELL!!!

Saturday is my 167.35 mile bicycle ride >>>

spacecoastfreewheelers.com/...

and soon to be 71yo.

Hi addicted2cycling. Thanks for your post. I would love a translation of what you have reported here. I have been reading all the previous posts and find I am a beginner again. I have tried to learn on my own but this site is somehow on another level. I am from England, and perhaps that is the reason I am not understanding at least half the abreviations. I am soon to be started on casodex then Prostap 3 injections. Chemical castration. I do not like the side effects. There seems to be differing opinions on here as to what is good and what might not be good.I understand we are all different and many on here seem to have quite an amount of knowledge about treatments and have years with this cancer to prove it.

I am concerned with the original post by mateobeach about quality of life. He does mention most of the side effects that are somehow glossed over by surgeons and oncologists.

Is there any concensus of opinion on here about any protocols.

Sorry for longish post but i now feel i am being pushed into a corner and will very soon have to make a decision about starting chemical castration. I hope some of my personal concern makes some sense. Thank you. Now still fit and 77 yrs young. been putting of any decision now for 5 yrs.

Wish you the very best. Look forward to your reporting how it goes.

Hi Mateo.I admire your determination to do high T.

My understanding.

Your PSA has been basically undetectable and no Mets an issue. Your issue is lack of QOL due to bad side effects of ADT.

Your QOL is now GREAT after achieving high T and now you are stopping both ADT and T and letting your T drop. Your PSA has gone to 0.18 but this is as expected and still basically negligible.

Some Questions:

1. Most people who have been on BAT/ high T are doing so because their PSA is rising and becoming out of control eg PSA >3 to in the hundreds and are in the mCRPC stage. Do you agree?

Difference... your PSA started at non detectable.

2. Why can’t/ don’t you stay on high T ( above 1000) and monitor PSA. I thought there was at least 1 person on this site who has reported being on high T for a year or so. If PSA does not continue to rise why not?

The way I see it we all have PC cells that are killed by low testosterone levels and PC cells that then grow in low T levels but can be killed in high T (>1000). But for some people in high T they have PC cells growing too quickly in high T so cannot do BAT.

3. By your personal trial as soon as you come back to normal T levels (300 or so?) your PSA will increase as you are in the normal T zone where all PC cells will thrive. Your thoughts?

MateoBeach
MateoBeach in reply to nobaday

Thanks for your perceptive observations. There was only one small trial of BAT in HS PC in 2016. So it is mostly unknown territory. My PSA after RT of two PLNs with ADT for six months left me with very low but not undetectable PSA of 0.080 after 14 months off of ADT. So I have to believe there is still some PC hiding somewhere. So undertaking SPT carries some risk of accelerating its growth. That is why I undertook this as a personal test to see if I would respond unfavorably. The first half of that is done: PSA went up moderately but not severely. The second half will play out over the next 2-3 months off the supplemental testosterone and hopefully will confirm it coming back down. I want to see where my T level will settle without ADT at this time. And also how long the relief of hypogonadism symptoms will last. I have already put on 4.5 pounds of muscle and strength is significantly improved. With that info, and also with another PSMA scan if PSA rises above 0.20, I should be in a position to use that info in deciding on a strategy going forward. I will use High T cycles only to the degree necessary to keep severe hypogonadism at bay. (I had so little core muscle I had lumbar disks collapse and needed spinal decompression surgery last month. So it is a real risk to my health and lifestyle. My spine surgeon thinks correcting my T will be helpful on recovery and reducing further risks. )

So perhaps a four week cycle of high T perhaps every 4 to 6 months might be sufficient without being too dangerous for my PC. Much is unknown including whether ADT will need to be added in the off cycles in the future. Note that the high testosterone and related estradiol may sufficiently suppress the hypothalamic/pituitary stimulation of endogenous testosterone for some time. I will find that out also.

A bigger question that currently has no answer is if some form of high/low T cycling in HSPC might help delay emergence of castrate resistance. That will have to be answered in a large prospective trial.

Thanks for your interest and support. Paul

nobaday
nobaday in reply to MateoBeach

Hi Mateo Paul

RSH1 was one of the guys who has been taking continuous SPT.... I remembered when he replied to your post. HE HAS BEEN ON SPT SINCE 3/19, THATS OVER 2 YEARS. WOW!

T_A has said that BAT can be beneficial but continuous high T is crazy. Lots of other people chime in to say risky, and growth explosion of Timor’s... but with no data.

You said you have read peer reviewed papers. There was reported a pain spike for some on one of the old small BAT trials but went away after a few days.

I don’t see any data on people with mHSPC or mCRPC who have tried continuous SPT . Apart from RSH1. Have you found any papers?

If your PSA starts going up significantly you can just go back on ADT. No real loss?! Except of QOL again!

In your case you have not had any pain side effects or significant PSA rise.

So my question is why not try continuous SPT like RSH1?

Or was your goal just to get back to a normal T as quickly as possible to get rid of the side effects of ADT? With less chance of continuous high T side effects .... that I don’t see documented anywhere!

Note that RSH1 takes some other things as well to control estradiol etc

nobaday
nobaday in reply to nobaday

Sorry RSH1 said started continuous SPT ( high Testosterone) 09/19 ( not 03/19) so on it for over 18 months so far ... still WOW!

Justfor_
Justfor_ in reply to MateoBeach

Following this thread the history of Quantum Mechanics comes to mind. How come you will ask? The poor soul that came up with this theory was an... engineer! At his time, the establishment of physicists jumped on him in the fashion: "You are an engineer, you are not suited to theorize on quantum physics". So, he came up with the solution to rename his theory as: "Quantum Mechanics". As an engineer he was suited to deal with mechanical things!!!

MateoBeach
MateoBeach in reply to Justfor_

Reminds me of the old story illustrating the difference between physics and engineering. Farmer wants to build a chicken coop but doesn’t know the dimensions he needs for best accommodation of chickens. So he goes to his physicist brother and asks him to calculate it. A week later his brother calls him back and starts: “ Well, assuming spherical chickens ...”

Jeez. That's all.

"I should have been a pair of ragged claws

Scuttling across the floors of silent seas."

T.S. Eliot, "The Love Song of J. Alfred Prufrock"

MateoBeach
MateoBeach in reply to MrCatMan

Cool one. Will look that up and jump in.

maley2711
maley2711 in reply to MateoBeach

Mateo -

There was quite a back and forth earlier in this conversation, re your understanding/recognition that undergoing tour trial of one could increase your risk of earlier decline in QOL caused by rapidly evolving metastases, and not caused by continuation of ADT. TA posed that we did not know your understanding of those risks. Others here argued that you did understand the risk, as indicated by your self-composed release of liability.

Maybe you could settle that little issue......did you undertake your trial of one primarily as a reaction to unbearable loss of QOL caused by ADT, and were you informed and understood the increased risk deterioration of QOL caused by cancer progression and not ADT? NO reason for us to speculate as to what was in your mind!!!

MateoBeach
MateoBeach in reply to maley2711

Fair enough maley2711. I had been intentionally staying out of the back-and-forth as I thought I had reported my decision process sufficiently. Certainly I am acutely aware of the potential risks, including possibly hastening my own demise from accelerated PC. This is not being done on a whim. That is why it is a test of my response to SP testosterone and not committing to a program of therapy with it until I make this assessment. My hypogonadism was not just a bit of unpleasantness but was a condition that caused deterioration of my body musculature, including core spinal support, in spite of a dedicated strength training program. Last December a disk collapsed

At L2-3 level resulting in spinal nerve root compression that caused disabling pain on standing or walking. I went from walking 5 to 10 miles daily with a pack ( my training for thru-hiking) to not being able to stand for 3 minutes not walk 50 yards without Severe pain.

On March 1 I went to Monterey and had spinal nerve decompression surgery, from which I am still slowly recovering. My surgeon also advised in favor of testosterone during my recovery for improving healing and restoring muscle. Over the past month I have gained 4.5 lbs of muscle and am seeing substantial strength gains. Push-ups went from a pathetic 20 to 50 yesterday, for example.

Here is what I wrote last night to another brother in this forum:

MateoBeach to. nobaday

14 hours ago

Thanks for your perceptive observations. There was only one small trial of BAT in HS PC in 2016. So it is mostly unknown territory. My PSA after RT of two PLNs with ADT for six months left me with very low but not undetectable PSA of 0.080 after 14 months off of ADT. So I have to believe there is still some PC hiding somewhere. So undertaking SPT carries some risk of accelerating its growth. That is why I undertook this as a personal test to see if I would respond unfavorably. The first half of that is done: PSA went up moderately but not severely. The second half will play out over the next 2-3 months off the supplemental testosterone and hopefully will confirm it coming back down. I want to see where my T level will settle without ADT at this time. And also how long the relief of hypogonadism symptoms will last. I have already put on 4.5 pounds of muscle and strength is significantly improved. With that info, and also with another PSMA scan if PSA rises above 0.20, I should be in a position to use that info in deciding on a strategy going forward. I will use High T cycles only to the degree necessary to keep severe hypogonadism at bay. (I had so little core muscle I had lumbar disks collapse and needed spinal decompression surgery last month. So it is a real risk to my health and lifestyle. My spine surgeon thinks correcting my T will be helpful on recovery and reducing further risks. )

So perhaps a four week cycle of high T perhaps every 4 to 6 months might be sufficient without being too dangerous for my PC. Much is unknown including whether ADT will need to be added in the off cycles in the future. Note that the high testosterone and related estradiol may sufficiently suppress the hypothalamic/pituitary stimulation of endogenous testosterone for some time. I will find that out also.

A bigger question that currently has no answer is if some form of high/low T cycling in HSPC might help delay emergence of castrate resistance. That will have to be answered in a large prospective trial.

Thanks for your interest and support. Paul

MateoBeach
MateoBeach in reply to maley2711

Thanks maley2711. Extended reply to your questions is posted below. Paul

maley2711
maley2711 in reply to MateoBeach

Thank you. That should clear up all the specualtion about your awareness of the risks, and is in line with what I understood you were saying in your initial post.....you went a new road out of desperation essentially. Wow, meanwhile lucky to do 2 pushups.....some of us are blessed in that way, and some aren't. My big deal at 72 is walking 3 miles /day.....at least my goal. Never had upper body strength....even in good ole days. Hope not coorelated with life expectancy......otherwise don't care.

maley2711 wrote >>> " ...Maybe you could settle that little issue......did you undertake your trial of one primarily as a reaction to unbearable loss of QOL caused by ADT, and were you informed and understood the increased risk deterioration of QOL caused by cancer progression and not ADT? NO reason for us to speculate as to what was in your mind!!!"

In response MateoBeach wrote >>> "Fair enough maley2711. I had been intentionally staying out of the back-and-forth as I thought I had reported my decision process sufficiently. Certainly I am acutely aware of the potential risks, including possibly hastening my own demise from accelerated PC. This is not being done on a whim. That is why it is a test of my response to SP testosterone and not committing to a program of therapy with it until I make this assessment. My hypogonadism was not just a bit of unpleasantness but was a condition that caused deterioration of my body musculature, including core spinal support, in spite of a dedicated strength training program. Last December a disk collapsed... "

My response is >>> GOOD LUCK MateoBeach and WHAT TOOK YOU SO LONG TO DECIDE????

2015 was my being told YOUR GLEASON 10

2015 was my choice for IMMEDIATE CASTRATION not the SOC of ADT

2015 was my choice for CRYOABLATION not a SOC approach and then 7 months later have THE FIRST EXPERIMENTAL IMMUNO INJECTION in situ of Keytruda + Opdivo + Yervoy for an individual in my circumstances.

2016 one month after IMMUNO injection I began Cypionate 200mg at 1ml injection biweekly. JUST HAD SHOT YESTERDAY and as I type this response per previous "T" testing following injection my "T" level is in the 1,600ng/mL range AND I FEEL NOTHING EXTRODINARY

YES, I might be ending my life earlier compared to had I gone the SOC route but I doubt very much if I had done so I would AT THIS MOMENT be preparing my bicycle for a one day/10 hour long 167.35 mile ride across Florida this coming Saturday. I would also doubt that my thoughts would be on another RIDE MY AGE PLUS bicycle ride for my 71st birthday in July of 143 miles or another ONE DAY CROSS Florida ride of 200 miles in October.

Could be that my QUALITY of LIFE expectations are at a different level of physical/mental state of being and thus I am grabbing for the GOLDEN RING as I ride the Merry-Go-Round of LIFE for every day remaining and "Damn the TORPEDOES."

p.s. >> if my post is offense I will delete or ask Darryl to due so. No malice meant regarding other's thoughts.

Congrats on your good outcome to date. I have no idea what SOC you avoided, nor do I know much at all about the treatments you chose. if you chose non-SOC in hopes of doing things that would give you better QOL and yet hopefully have life-prolonging efficacy, of course go for it.......I think few here would argue with you!!

The urologist how first diagnosed me and performed my orchiectomy PREFERRED that I start with ADT and then off to see his cohorts for deciding on treatment such a Radiation, Chemo, Surgery or basically the SOC most would follow for GL10.

I haven't yet met someone who went with orchie, cryo, immuno + TESTOSTERONE

Too are indeed a pioneer and also a champion in my book, a2c. Ride on.

cant see anything offensive here. haha. What is SOC please. I wish after reading all these posts I could find an answer to quality of life versus longevity with side effects that demasculate the person. Although 77 yrs young I have always been a busy person doing too many things. I dont like the idea of thinking about doing things in the future and not being able to physically do them. If i read it is usually to study something which entails some physical activity. Fantastic site whatever the opinions. haha

Standard of Care that GL10 would likely be followed to not rock the boat. My taking Testosterone could be considered adding fuel to the fire so not advised.

maley2711
maley2711 in reply to Healthaki

It is all in how you define QOL IMHO. If a man currently has no bothersome symptoms resulting from existing metastases, etc......then undergoing immediate treatment and/or ADT risks an immediate lowering of QOL, especially for older men who have more risk of side effects....I belive studies document that probability. On the other hand, doing nothing until definite cancer problems occur wil, overall, lead to shorter life. The data to show you what you would like to know is probably buried in the records of millions of men who have already been down this road...it is a matter of data mining to make it available to us. We could look at stats for men who had no treatment until scans already showed metastases, and only then received treatment. Also stats for men who underwent treatment before scans showed metastases. Maybe such comparisons exist.....but can't provide them until I those studies. Maybe someone else here can provide them..and with diligence, Gooogle can hlp us find a lot of stuff!!

Some men feel that just living longer is a QOL measure...no matter the SEs suffered to have that longer life. Also , delaying cancer death long enuf may mean that a man succumbs from some other malady , eg heart attack, which are not such a tortuous way to die.

We will never be able to tell a specific man which road he will travel by accepting earlier treatment....well, at least not in my lifetime..

Now where was I? I think I lost my place........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 04/05/2021 9:28 PM DST

I'm aghast that there would be questioning or apparent condemnation of someone choices in regard to their treatment!

Discussion in regard to a particular therapy efficacy or results over trials for a particular patient profile or diagnosis, ok. But really... Do we chastise patients who decided on RP and are suffering the worst side effects? Or RT and are experiencing their terrible aide effects years later? No, of course not.

So here we have a patient who is sharing his path, his choice of therapy after doing personal soul searching and some learning, and has made a decision. Who are we to question this even in the slightest?

I don't believe patients should be held to ONLY approved SOC therapy! I believe this is the norm (SOC) and that's ok, but I also believe patients should have, and be able to make their own choices regardless of the Gov't, insurance or medical industry's approval. It works then it works, it doesn't, then ok too. The medical community pretty much dismisses the many "One Off" success stories especially when the results can't be duplicated. But that still doesn't mean for that patient, it didn't work. And yes, even when they cannot identify the mechanism for success. As we all know, or should, that Biomedicine is a very complicated issue, we don't have all the answers, and we don't know everything! Not even close...

But oh, the horror! How it would impact their insurance ratings, how it would affect their standing in regard to patient performance! The loss of Blue Ribbon Certificates or Designation as a facility of Excellence... Oh my! What is it, these institutions actually prioritize? Is it truly the patient above all? Of course that's a naive thinking.

Additionally, its funny how patients with initial diagnosis get up or downgraded and this does not impact those performing the grading! Intermediate/High who become Low/High risk when things fail or progress... The ever modulating stratification of diagnosis, just ehhhhh!

Anyways, I'm left to wonder how Professor Ben Williams who beat GBM so many years ago, would factor in to this type of discussion... How he challenged the norm and made a difference, not only for himself, but ultimately many many others since! Including opening eyes within the medical community! Or do we dismiss his story as a fluke? Hmmmm...

For me, I appreciate all who provide their input, those walking untraveled paths, and those who have vast experience and knowledge of the pro/anti possibilities! It's all very useful and helpful to the rest of us. I just don't believe it should be directed at the person or their choices.

If I met you at a harbor, and had seen your sailboat leaking and made you aware of it, yet you planned to sail away regardless, I would cheer you on as you sailed out of harbor, and would wish you well on your journey! But that's just me...

Apologies if I've misinterpreted the posts above ;)

Good Luck and keep us in the loop!

Best Regards

Healthaki
Healthaki in reply to Cooolone

well written. I am on another site where people with different cancers including prostate cancer are getting great benefits with fenbendezole. a worming tablet. The people on the site are just like people on this site. They explain their original diagnosis. Then they are given the news there is nothing further that can be offered so people are trying fenbendezole. Many with great success. So really anyone experimenting should be applauded. I have been reading about Relugolix, a new drug for ADT. just passed in america. less heart attacks etc and came out better than the present drug being used for ADT.

Cooolone
Cooolone in reply to Healthaki

Yes, Relugolix is recently approved. I applied and my insurance denied it. The results of the HERO trial with improved outcome for cardiovascular events AND the better castration levels maintained should be enough to justify a switch for advanced patients! But COST is their biggest concern... Simply amazing! We shall see if it gets approved on the 2nd go round, I have another week until my next Lupron cycle.

You may also like...