A bit of history - MY advanced, aggre... - Advanced Prostate...

Advanced Prostate Cancer

21,056 members26,262 posts

A bit of history - MY advanced, aggressive PCa story continues ...

RonnyBaby profile image
69 Replies

A bit of history - MY advanced, aggressive PCa diagnosis seemed like a death sentence.

Age 66 - in reasonable healthy state, overall, although I suffer from severe arthritis,, which I have been able to manage (finally) in the last 18 months, with the help of some off label assistance AND medical cannabis.

A Canadian can apply to legally grow their own medicine. That would describe me - I am self reliant - after investing in some indoor and outdoor growing environments.

It started years earlier, seeing as this type of cancer has been developing for years - like most others. PCa can sneak up on people.

Mine was not so subtle.

Was on a Caribbean cruise during March break in 2017. I had been getting up frequently at night 2 P - I knew something was wrong, BUT, stupid me, I didn't want to investigate the obvious. I had troubles for months, prior 2.

Got off the boat and told the wife - I've gotta see my GP - maybe I could try 'flowmax' -had read about it - but I was looking for an easy way out.

Saw my GP in 3 days - got a 'script' and about 2 days later ended up in emergency with acute urinary obstruction - couldn't Pee -By the time they saw me, I was bent over in pain - wondering if I was going to die !

They FINALLY inserted a catheter and I dumped what seemed like half a bucket full of piss.

You'd THINK that someone might suggest I get my prostate checked out ?

NOT !!!!

This scenario played itself out for 4 months (multiple visits to the emergency ward) before I was finally in front of a urologist.

You can't refer yourself, apparently. I was given a business card of a staff Uro in the hospital I had picked for another E-ward visit. The Uro refused to C me !!!

I didn't give up - he finally saw me one month later when my GP woke him up !

HIS diagnosis - advanced aggressive prostate cancer. I thought I was dead meat (while I was still plugged into my catheter - my travelling companion). What would a naive person think after that kind of announcement?

Anyway - let the testing begin - they setup a test which led to many others.

Results ?

G9 - PSA 300+ - stage 4, node positive - & can't P ....

I was offered a shot at a clinical trial - an aggressive attack was the choice.

YES was my answer, although they pulled the plug on me after they discovered spots on my liver and spleen. After further scans and investigation, my 'spots' were deemed benign and I was back in the game.

The trial ?

Double blind Apalutamide (or placebo), combined with ADT / Eligard (for 28 months) plus Radiation (the max - 81 Gy to the prostate) plus the standard dose for the pelvic area (45 - 50 ?).

There was a showstopper - needed a TURP - so that delayed everything until late July of 2017 (4 months). Those UTIs would finally come to end - I could detach from my plastic companion.

The treatments seemed to be working because I got the nadir down to <0.002 in about 8 months. That was great news, except for the fact that I became suicidal - that ADT stuff became totally intolerable to me.

At 12 months, I quit the Apalutamide (or was it placebo?) hoping that the ADT side effects might be reduced. That didn't happen - so I quit the Eligard in July 2018, after 16 months. I should mention that my 'medical team' wondered WHAT is he thinking ? Is this refusal of treatment and/or a slow path to self extinction ?

At that time, after being aware that I was 'clear' (undetectable) for about 8 months, I felt I had nothing to lose. In terms of TIME, how long should ADT be given for patients like me ? I read that there was no concensus - but 2 years was the minimum most mentioned. The trail wanted 28 and the Onc suggested I might be on it forever.

YIKES !!!

IF you pass 2 years on ADT treatment, the side effects could become permanent - U pass a point of no return. 4 me, that was unacceptable - let the clock tick and lets see what happens.

Could I cycle on this stuff while watching and waiting ?

So, today, I have been told that my case is somewhat unusual - my results are not typical. I'm not expected to continue 'clear'.

My testosterone has crept past the castrate stage (1.5 and climbing). I'm still undetectable (10 months and counting) and I can't explain why I've got to this point.

I TRY to eat well, get some exercise (which really does help) and combine treatment options with my GP, Onco, Naturopath and medical cannabis 'doc'.

They tell me my withdrawal from ADT will last till around Christmas of this year (another 9 months or so). I must admit that I worry about a recurrence - did I gamble on this one ?

BUT I should mention that I got my 'oncoplus' test done via the RGCC Group about a month ago and my numbers are well below the cutoff point, meaning that my 'cancerous state' is under control thru treatment OR my immune system. At least 4 now.

I don't have a crystal ball - what awaits me ?

Not sure, but what I've read is encouraging. Apparently, about 5% of men diagnosed with MY stage of disease will be able to claim a cure.

I'm still part of the trial, although I quit the' meds' - they want to keep monitoring and testing me while doing the blood work. I'm OK with that. The TRIAL is ongoing - call it ATLAS. I'm grateful I was chosen and I appreciate what they did to treat me. I had a good team - I continue to meet every 3 months.

Please pray 4 me - I hope that there's something meaningful left 4 me to do on this mortal coil ....

Written by
RonnyBaby profile image
RonnyBaby
To view profiles and participate in discussions please or .
Read more about...
69 Replies
Tall_Allen profile image
Tall_Allen

You are mistaken in your assessment that you can just try ADT for while and cycle off it like that when you are taking it adjuvant to potentially curative radiation to the prostate and pelvic lymph nodes. The ADT kills off the easy cancer cells first - it can take some time to completely kill off all of them. It is similar to the way antibiotics kill bacteria- if one stops taking them before a full cycle is completed, it selects for the most resistant bacteria, which then take over. It's too late now- the damage is done. All you can do is monitor closely, and what might have been a 2-3 year stint on hormone therapy will be a lifelong stint if your cancer progresses.

RonnyBaby profile image
RonnyBaby in reply to Tall_Allen

Thanks for the feedback. In terms of what might have been, I must tell you that I was so miserable from ADT, that I wanted to die. I made my choice at that time. QUIT the ADT and see what happens. Survival for me is not at any cost. Quality of life is more important. I was also told tht ADT would not cure anything - it would simply buy me time, at best. The prediction was/is - your disease will morph and there's not much you can do about it. There was the tiny carrot put out there that maybe I might be one of the lucky 5% who beats it. Those aren't great odds, as I see it, so why not try to get back to 'normal' (for a little while) and hopefully, you might be able to short cycle to buy some more time, down the road.

Then, there's no consensus that I found about duration of ADT, unless I stayed on it. For me, that was NOT an option. I'd rather be dead ....

Then I read, stay on this 'stuff' fr 2 years and you are looking at permanent side effects.

For me, that is not an option.

Maybe, there's something else (like chemo) that will buy me some time, when it is indicated.

Unfortunately, for many of us, we get messages from the doctors that are confusing, incomplete or nothing more than an educated guess.

Perhaps I'll regret my early exit, but I've yet to see convincing evidence that would have changed my mind.

If God wants me sooner, he'll take me in due time.

If He gives me time to accomplish something, then I hope to give something back.

I'm a risk taker by nature - so be it .....

Que sera, sera.

PhilipSZacarias profile image
PhilipSZacarias in reply to RonnyBaby

We all have to make our choices based on what we value the most, and live with those choices. I have made many and live with them. There is so much uncertainty that I do sometimes become concerned about whether I have done the right thing. Patrick was correct in providing the technical feedback, but I also understand and respect the choices you have made based your values for life. Phil

JamesAtlanta profile image
JamesAtlanta

Quite a story! Thanks for sharing ... we are all praying for you!

James

NPfisherman profile image
NPfisherman

Prayer said....from my lips to God's ears....May you have a long remission...

Don Pescado

in reply to NPfisherman

!Simon Don!

NPfisherman profile image
NPfisherman in reply to

Me Capo Lulu....que pasa amigo?? Te llamaré más tarde si quieres hablar....

Lupron Don--- don't mess with me or desire goes out the window.... or is it Desiree who goes out the window...

in reply to NPfisherman

A sus ordenes senor!

Hey RonnyBaby , you words mirrored my own experience in many ways. I thought that I was the only stubborn mule to push through symptoms to near death. I went into k failure while under my uro’s Care . I cried malpractice. No one else would take me after they let me go into k. Failure. Canaby for me soothes many side effects . Without it I have no appetite .. I too am also temp clear status and in the “ EYE “ of the storm . Dr Oz just spoke of ketamine for depression. Sign me up for the special K.. 1 in 6 Americans take psychotropics already . This ketamine could replace many others now used in my opinion . The problem is the fda wants a patient to use and fail two other drugs prior to being qualified for ketamine. This is a sham ..for profit ? Ketamine has a nasal spray form that is said to work in just hours instead of months for most others. I too am taking a test drug , but for how long .. only the shadow knows ... peace to you ..

Coop49 profile image
Coop49 in reply to

Lulu an Ronnybaby you both have gone or going thru my journey. I was on ADT for 3.5 years when I became castrate resistant. I’m still having the monthly injection of Zoladex. My onco said to keep having it for life as the little bit helps with the Zytiga I’m now on 7months.

As for the anxiety and depression. I use a little bit of my attitude to life

I don’t give a Fuk

It works for me but since I’ve been ingesting my oil capsules I don’t get any negative thoughts. Also

I have been pain free for 13 months now from the excruciating pain from the osteoarthritis,a side affect from the ADT. Walking anymore then 20 metres was agony.

Now my wife tells me to slow down.

Keep up the good work guys. Git it out there. Just don’t dwell on the negative results an reply’s from us suffers. Everyone responds to different treatments.

Cheers ken

in reply to Coop49

Ken . You’ve got it right... my wife is similar , she doesn’t let giving a f@@@ get in the way of her happiness.. half of the stuff we worry about ain’t going to happen . None of us advanced fellows are going to shirk this disease completely . So why lament that we can .? I’m not saying give up to pc rather accept our role in this APC show as a life sentence not a death sentence . As long as the sun rises there is Hope..

Coop49 profile image
Coop49 in reply to

Lulu. I was inoperable. Terminal. 25% chance to get to 24 months. After 24 months the % goes down to 5%. I’m in my sixth year. My PSA is .24urg/l.

I have great quality of life. I still drink my beers every arvo. Why give up some pleasures of your life. Definetely don’t sit at home moping about my demise never have even for the first 4 years when I had those agonising pain in my legs an hips. The dull pain in my bones.

Out there doin it

I’m going to s Symposium for Medicinal Cannabinol in Coolangatta Qld Australia in 2 weeks for a couple of days lectures from NZ

unitedincompassion.com.au/2...

in reply to Coop49

Coop49 , I like your zest for life . It’s contageous , if we don’t get some zest , what’s the point ? Eh , good man. I agree . It’s not the size of the dog in the fight it’s the size of the fight in the dog.

Coop49 profile image
Coop49 in reply to

Lulu ta mate. I like that little quip of yours. Mind if I use it? Lol.

Keep up the good fight fella.

Ken

in reply to Coop49

It’s Mark Twain once again , not me . Use away .. the big job for me is not to fight myself .

Rmurchu profile image
Rmurchu

My husband was just diagnosed with Gleason 10, just starting this journey and just about to take his first pill of casodex ...lupron next they said and then radiation, we are in US in Florida and need to go back to Toronto to get treated there ..biopsy was done here they said they could do Bone scan and pet scan here quicker that would help our doctor in Canada decide course of action. Good luck to all of you, stay positive that's all there is anyways. We are both in shock, just learned the news today.

RonnyBaby profile image
RonnyBaby in reply to Rmurchu

You are basically describing the protocol or first line defense that exists in Canada.

The Casodex is a temporary ADT therapy used to get the body ready for the bigger ongoing transition to Lupron / Eligard. That form of ADT will likely be ongoing but I'm no doctor, so consider the source.

Casodex kills the 'spike' you get when they try BOOST the testosterone to a burnout rate.

It is possible that they could 'stack' the treatments (ongoing combo) during and after the radiation, but I suspect the former. The patient reaction will determine some of the longer term strategies.

The radiation will probably be the max level - I was OK with the rad treatment - no major side effects (yet - 1 year after) but I did experience some major fatigue towards the end of the treatment cycle. I under estimated the fatigue - hopefully, it won't be too hard on you.

It took me a months to recover ..... depends on what you do for a living.

I wish you the best and hope to hear from U in the future.

in reply to Rmurchu

We cried like babies for two weeks . Then I asked her hand and she accepted.. Love is the best medicine . The first blast is tremendous . You’ve found a great source of info here. Much to your benifit finding hu early . I didn’t find hu until two years after dx. Most drs don’t go too in depth with anything except their view. If there is any way to get advice from a prostate Cancer Specislist do it. Ask questions here and prepare for the Dr visit. The fear factor of the unknown and thinking yourself dead is pretty common . Reality is with treatment there is hope . It’s no pleasure cruise , but some have lived decades beyond a bad diagnosis .. my opinion is that diet and exercise are crucial . Some have run with cheeseburgers in hand with success . We are all the same yet different. I am sorry for what you both are going thru right now . You are not alone . Every one of us that have had similar bad news can relate to the horror . I pray for your family to face this together .. and to draw closer in realization of how fragile we are now... and how short life can be. Think positive, cry a lot , let the emotions out . Then its “get busy “ and start treatments . Half of APC is emotional for most . His hormones will be stripped . That’s a joy in itself . New stuff coming out all of the time. Keep hope , and faith . He will need you now more than ever. I’m glad he has you . Just the fact that you’re here on your first day tells me he’s in capable hands. Scott

Rmurchu profile image
Rmurchu in reply to

Thanks for your kind words,

Coop49 profile image
Coop49 in reply to

Great words and advice Scott

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Rmurchu

I am also Gleason 10; diagnosed June 2018. Subsequently had genetic testing which determined I am BRCA2+. Now on Olaparib, a PARP inhibitor, as a result. I strongly recommend having the test, which is simple and inexpensive. Used Color Genomics at color.com .

Rmurchu profile image
Rmurchu in reply to HopingForTheBest1

Thanks for sharing I had genome testing when they did my biopsy not sure what that will reveal. What protocol are you following, what did you do as a first step after being diagnosed. Did you take Casodex (testosterone reducer)? Are you doing ADT? Radiation...just trying to figure out what my next steps should be one tumor found encapsulated. They said I need full body scan, is this for chemo if it has spread to bones? I read the chemo in PC is not effective in the book the prostate snatchers. Let me know, as I am hoping for some strategy to go with.

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Rmurchu

Started on 30 day Firmagon shot to quickly lower PSA. Switched to Eligard, and am still on it. Then went on to Zytiga + Prednisone for the next 6 months; found research that said it was just as effective as chemo but without the toxic side effects. Also changed diet by minimizing carbs, sugar and dairy; lost 25 pounds in 3 months. Exercising regularly. PSA went from 20 to 0.12. During this time I also participated in SIMCAP clinical trial which included robotic prostatectomy done in November 2018. Soon after surgery PSA started to rise. Switched to Casodex 50 mg + Olaparib. Had latest blood work yesterday, and PSA down from accelerating from 0.55 to going down to 0.50. Starting on Provenge immunotherapy this coming Tuesday.

Do as much research as possible. There are so many resources available. You are your own best advocate. Knowledge is power. Good luck.

Rmurchu profile image
Rmurchu in reply to HopingForTheBest1

Thanks for your comprehensive reply , appreciate the time you took to share your journey .

in reply to HopingForTheBest1

That’s one perfect ten you never asked for.. you are are dealing with it soundly.. good luck moving forward .

Rmurchu profile image
Rmurchu

Casodex was given to us by the doctor here in Florida to help until we get back to Toronto not sure if they will agree with that there, I guess I should wait till Monday and call the office before we start. We have a place here in florida and here they did a 3TMRI that is not available in Toronto . They wanted to do just a trust biopsy first in Toronto. Not sure they would have found his cancer as it located in the anterior section of the prostate. So now need to go back to start radiation I guess. Thanks for the reply, I don't want to be morbid but what is the survival rate for Gleason 10 do you know ? I keep reading statistics, I guess I just want a straight answer, no sugar coating . I read 5 years is that about right?

RonnyBaby profile image
RonnyBaby in reply to Rmurchu

It is hard to predict. I've seen all kinds of stats - very confusing.

In this case, you don't have enough information to assume any accurate outcomes.

You'd be surprised how men deal with AND survive more aggressive cancers than the one you are describing.

You shouldn't assume how he will react to treatment. I can assure you, that after 2 years with skin in the game, I keep learning something new on a regular basis. When I was first diagnosed, I thought I was toast.

If you ask me today what I think - how long ? - I'm thinking beyond 10 years - there's some new treatments and technologies in the mix - don't think it's over - you have just started to fight back.

You'll also want to look and think outside the box - there's resources out there to look into.

STOP thinking about survival time - there's much more to consider and be positive - it's not time to quit living.

Nothing is guaranteed, of course, but you can control the negative thought - you can make some great choices ....

Crabcrushe profile image
Crabcrushe in reply to Rmurchu

It's until God needs a person in heaven more than here.

Until then, fight with every available resource without neglecting anything else. It's actually enjoyable to my Wife and I, almost as would be an addictive team sport. Sounds perverse -counterintuitive at the least-until you get past the initial realization of just what you're "in for" and start gearing up for combat. Once you start winning skirmishes and stacking up dead crabs, it becomes a hoot to look for other and more efficient ways to obliterated the SOB.

Nous Defions

Crabcrusher

Rmurchu profile image
Rmurchu in reply to Crabcrushe

Positive way to look at it ,thanks for sharing .

Crabcrushe profile image
Crabcrushe in reply to Rmurchu

You're welcome.

Is there a better way to look at it?

Crabcrusher

joekaty profile image
joekaty in reply to Rmurchu

@rmurchu if it hasn’t left the prostate then even if you are a Gleason 10 then I would think you are still in the area of treatment with “curable” intent or if not have many, many, many years to live. The stats can be confusing. I know it’s overwhelming. Take a deep breath. Your story sounds full of hope to me.

Rmurchu profile image
Rmurchu in reply to joekaty

Thanks for the encouragement .

j-o-h-n profile image
j-o-h-n

Okay Ronald, "Que sera, sera." Stop with the Latin, just because we identify Stage IV Prostate Cancer with Roman numerals, doesn't mean you can use Latin here. I know you can't change a leopard stripes, but you gotta get you ass thinking another way. You're been through a lot of but you have to live a full life so you can bother the shit out of everyone around you. Keep fighting...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/08/2019 8:30 PM EST

RonnyBaby profile image
RonnyBaby in reply to j-o-h-n

Que sera, sera is FRENCH, actually - just ask me - I'm one of 'them'.

j-o-h-n profile image
j-o-h-n

Oui Oui okay I guess whatever will be will be in French. Do you mind an anti French joke? Can you handle it? (I'm into humor)

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 03/08/2019 8:50 PM EST

RonnyBaby profile image
RonnyBaby in reply to j-o-h-n

A sense of humour is always appreciated by me.

I like frog jokes the best .....

j-o-h-n profile image
j-o-h-n in reply to RonnyBaby

You asked for it......

Here goes...... Why did the French plant trees along the Champs-Élysées?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/09/2019 7:26 PM EST

in reply to j-o-h-n

I don’t know , why?

j-o-h-n profile image
j-o-h-n in reply to

Sorry, You'll have to wait until RonnyBaby asks why.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/09/2019 9:16 PM EST

RonnyBaby profile image
RonnyBaby in reply to j-o-h-n

OK - I'll bite (in anticipation of going into hysterics - I've got my lid fastened)

in reply to RonnyBaby

Ooohhhh ?

j-o-h-n profile image
j-o-h-n in reply to RonnyBaby

You asked for it......

Why did the French plant trees along the Champs-Élysées?

Because the Germans like to march in the shade.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/09/2019 11:00 PM EST

RonnyBaby profile image
RonnyBaby in reply to j-o-h-n

Let's just say the punch line is dated - reminds me of my favourite word - verboten.

That's a term of endearment used with a Finnish squeeze about 30 years ago.

Attention Miss Verboten !

j-o-h-n profile image
j-o-h-n in reply to RonnyBaby

This next one may be "forbidden" in France. But since you couldn't contain yourself with laughter before, here's another knee slapper.

There's an Italian, a German and a Frenchman strolling on the beach when they come across a sealed bottle. Well they decided to uncork it and a Genie pops out and declares "For freeing me all of you are entitled to one wish" . So she says to the Italian "what do you wish?" The Italian replies "My neighbor has a boat, I wish I had 5 boats". And "Poof" the Genie gives him 5 boats. She turns to the German and asks "what do you wish? The German replies "My neighbor has a yard I wish I had a bigger yard. And "Poof" the Genie gives him a bigger yard. The Genie turns to the Frenchman and asks "what do you wish?" . The Frenchman replies "My neighbor has a horse". The Genie asks "Well what do you want?' The Frenchman replies "kill the horse".

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/10/2019 3:31 PM DST

RonnyBaby profile image
RonnyBaby in reply to j-o-h-n

Cela produit trop de merde

j-o-h-n profile image
j-o-h-n in reply to RonnyBaby

Oui monsieur mais c'est ce qui fait pousser les fleurs.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/10/2019 6:26 PM DST

tango65 profile image
tango65

I think you could be interested in this article:

ncbi.nlm.nih.gov/pmc/articl...

Bebby1 profile image
Bebby1

I will pray for you

You are certainly the road less travelled

So young

Hang in there

shit don't know where u live but in the us u are regularly checked your psa after 50 years. when my psa went up then a biopsy i took the way out radiation over time then zYtiga lupron,more radiation when was dx as local found mets took PROVENGE then back on zytiga and will go with other meds that my urologist states should bring my psa from 37 to 0. been treated for 11 years now. my oncologist was a shit and remember there are other docs out there if your not happy with your current doc. its your life dude not theres.

charlie

Crabcrushe profile image
Crabcrushe

"Please pray for me..."

Done deal

Nous Defions

Crabcrusher

RonnyBaby profile image
RonnyBaby in reply to Crabcrushe

Thank you sincerely ....

Jbooml profile image
Jbooml

This all points to the likely prospect of a one drug one cancer fit for most....with more meds being rushed to we sufferers in ever expanding numbers....good vibes...special thanks to the fearless drug developers.

gsheltonone profile image
gsheltonone

I had my prostate removed in August 2017. In mid 2018 my PSA went from undetectable to.1 then .2. Its 2019 and this coming Monday 3-11-I9 meet my Urologist to discuss the test results (Testosterone, PSA, Bone Scan and CT). I was told to stop taking Testosterone enhancement (GNC). I had no idea Testosterone had anything to do with PSA increasing.

I read articles I learned about here and it seems two sided some is pro and some is con?

Well we will see.

George

RonnyBaby profile image
RonnyBaby in reply to gsheltonone

Perhaps they are suggesting that something was left behind - not unusual when it comes to surgery. That doesn't mean that it can't be treated - hang in there !

in reply to gsheltonone

Pc feeds on “T” Hope that you remain cancer free..

Break60 profile image
Break60

Castrate level of T is deemed to be 20 so you’re still considered castrate at 1.5.

You’re having very good results in terms of Psa progression which is a good thing considering where you started. If doubling time is low ( like 9-12 months) you may have temporarily dodged a bullet- at least a 50 caliber one.

But intermittent ADT is probably in your future and there are ways to mitigate side effects with diet and strenuous exercise and estradiol patches for hot flashes.

BTW, socialized medicine sucks.

RonnyBaby profile image
RonnyBaby in reply to Break60

There are TWO values associated with T counts - one is FREE and bound / total.

One number (1.5) is compared to 0.7 - a castration level. My other number was 20. I believe the other number (20) should climb into the hundreds,

When you do a blood test, you will be given 2 values / ranges to check.

I was surprised when my Onco told me I was already above the castration range, after 4 months of withdrawal / on the clock time ...

tkalaf profile image
tkalaf

I feel for you, and pray for you. I was diagnosed non-metastatic. The trial I Joined sent me through an 'intensive' 28 week long course of combined ADT and HT medicines, (Apalutamide as the prime research drug). Then after the drug phase, I had my RP.

There were many times I experienced excruciating (out-of-control) emotions, that made me question life. I forced myself to keep 'conscious' of the fact that it were trial drugs that were bringing about these uncontrolled outbursts. I also discovered that if I exercised (cardio on an eliptical) during my outbursts, I could work through them.

I realized each of us has there own way of dealing with ADT and/or HT medicines. My heart goes out to those have to deal with these medicines over longer periods. I wish you best of health, in choices that you make in your journey. God bless!

RonnyBaby profile image
RonnyBaby in reply to tkalaf

I appreciate the exercise regime you mention - I didn't do much of that, so it could have helped me (I suspect).

I was going CRAZY from the ADT. Some men don't react as badly as I did.

They couldn't control my hot flashes and my mind was alien in nature.

I was getting fat and my joints ached - very painful, added to my existing arthritis.

I'll probably need to cycle in the future - but the stats I've seen indicate that part and full time numbers are similar, in terms of final time of survival outcome(s).

Maybe a miracle in the works ?

Hmmmn - probably not, but we can pray 4 it !

Crabcrushe profile image
Crabcrushe in reply to tkalaf

"if I exercised, ...I could work through them."

My heart swells in recognition of a brother Warrior.

GIT SOME!

Crabcrusher

Don_1213 profile image
Don_1213

I'd suggest reading: ncbi.nlm.nih.gov/pmc/articl...

It's pretty much the treatment path I'm on (72, G9 or G10, depends..)

RonnyBaby profile image
RonnyBaby in reply to Don_1213

That is encouraging (the link). It goes to show that there's still so much to learn and compile.

I look good (they are telling me that) and feeling better - slowly but surely.

Hope reigns eternal ....

Rmurchu profile image
Rmurchu in reply to Don_1213

Thanks I will discuss with doctor

Patrick-Turner profile image
Patrick-Turner

Hi RonnyBaby,

Your story seems unusual, but then every man has different story because the nature of his Pca varies so much. Rather than type out my story yet again I have most of it here turneraudio.com.au/Patrick-...

At the moment I have just had 3 x Lu-177 infusions that reduced Psa from 25 to 17. The last PsMa Ga68 scans showed all my many soft tissue mets have gone to less than detectable and no new bone mets. But not all bone mets are behaving same way and there is a 10mm dia lesion in my right femur and in the bone marrow, not a good place to have a cancer lesion.

I begin a week of EBRT on 20-3-19 to give 20Grey to try to halt the femur lesion and a nearby lesion in pelvis. Pain is beginning to get bad, and I was forced to stop cycling to keep my fitness level high. I was diagnosed with Gleason 9, with 9 out of 9 positive biopsy samples and with "aggressive young men's cancer cells" so I have high risk Pca, and it will probably kill me, no matter what any doctor tries to do for me. I see oncologist again tomorrow and re-starting Zytiga and maybe having PARP inhibitors and DNA analysis to test for Brca2 genes will be done, but docs are getting desperate, but I am pleased, they want to cure with latest and expensive methods but my cancer is resisting all attempts.

I am still on ADT since 2010 and after first 4 years all features of my sexuality were exterminated. I still get hard-ons, but sponge tissue in cock has become full of fibroids so its like a brass garden tap, with half old length, smaller girth, and with bend to ground, and totally useless for normal sex. All feeling of pleasure has vanished. But I have remained mainly free of any women's company for last 35 years so I have no had to deal with upsetting any woman because sex life is over, or because she loses a husband who pays the bills.

Women now may as well be some kind of alien species, were it not for the fabulous female doctors and dentists I have, as well as the angelic nurses.

But all in all, I have had a good life, compared to billions of other humans who have a much worse life. For example, Steven Hawking spent a life in a wheelchair and had trouble moving an eye-lid, but he explored our Universe to find out more about Eternity, Infinity, and in many ways his work disproves that any God could REALLY exist, but then God does exist as the collective and shared imaginary being within most ppl's brains; they need this daddy in the sky to feel better. I have no such need of any God, because there is the Majesty of Nature, and it gives you life, but its not forever. So, before I die, I try to be nice to as many ppl as possible without the slightest involvement with any God ideas. Many wars occurred because of God beliefs, and the Inquisition did not help us, although coffin makers were kept busy. I see religion as a type of defect in human behaviour, but then I understand why religion helps ppl handle adversity. I never call out for God's help, I can only seek treatment for my illness, and hope something might delay death. I like being alive.

From what I have seen and experienced, ADT does not kill many Pca cells, and it puts most of them asleep in a kind of coma, but this does not stop the living cells slowly dividing and re-generating and mutating, and after time these Pca cells learn to make their own testosterone and they wake up and grow and become very difficult to treat in ever more expensive treatments that have increasing side effects. One may well ask me why I did not get Lu177 back in 2009 when diagnosed. But it was not available here, and many docs thought that if Lu177 was available as primary treatment where surgery was impossible ( as in my case) then the cells which survived the Lu-177 would survive to grow well and be quite un-treatable with anything.

So what is needed is targeted chemo and tailored immune therapy that depends on individual DNA analysis. Its the way of the future which is now available to the few now getting good results in trials. IT is proving extremely difficult to get right because out IT system is so complex, and altered white cells can cause terrible side effects where they attack not only the cancer, but other healthy tissues, and research at Marsden Hospital in UK has yielded only a small % of success stories. Some have seemed miraculous, blokes with 3 months left to live have been able to begin a new life, and no Pca, but afaik, there is no available and reliable IT yet. Provenge gives 4 months mean time, but a small % have had 10 years since it was invented.

I think my Pca will kill me before any big new breakthrough treatments become available. But I did live long enough to get PsMa scans and Lu177; these came to Australia in 2015. So already treatments have lengthened my life.

My doc giving me Lu177 said she wanted me back on my bicycle asap, and I hear her, but I cannot help thinking I will need a wheel chair soon.....

Patrick Turner.

RonnyBaby profile image
RonnyBaby in reply to Patrick-Turner

I see a gutsy individual who still has some fight in him. I admire your courage. I can only imagine getting news about where your treatment has 'landed'. We, as patients, were led to believe that help was available and that this disease was not a big deal. Life isn't that simple or predictable.

Your take on God is understandable. It is hard to imagine a loving God putting us poor creatures thru the ringer. Why do we need to suffer this way ?

I have come to the conclusion that we are ALL here on a journey. We will all die - there are no exceptions. We have free choice with many lessons to learn.

Our North American culture is often void (if we allow it) of generational guidance, nurturing, blessing and accommodation of others. It's no wonder we think we are looking at a train wreck n progress.

I see the results of living in a Godless world - it just degrades and rots from within. We can point to the unfairness of it all. The alternatives are being born into world that resembles a rigid dictators romper room - like North Korea - there is no joy in Mudville.

Our lives offered and delivered a lot of good with tough spots.

Some are born, trapped in a shell of ourselves - with debilitating disease or immobility.

Yet many of them are beacons of unconditional love with lessons to bring us to a higher level of awareness.

Thank you for sharing - what you've been thru is remarkable.

Don't give up - you still have lots to offer.

FYI - the link you posted above is 'infected' - my anti-virus flagged it when I landed there ...

Patrick-Turner profile image
Patrick-Turner in reply to RonnyBaby

Hi RonnyBaby,

I see your point about a godless world, which is feared by so many, but then my point is that God is a collectively agreed upon belief that suits many people when gathered together and my trouble with this is that belief in God and the Creationist theories and that world is only 7,000 years old is not based on any evidence. Pity help anyone who stands up to disagree with beliefs, they are like a nail that sticks up out of a floor, so it must be hammered flat, and in many muslim countries any sign of disbelief in Allah could lead you to being jailed, stoned, and freedom of belief does not exist. In the Christian past the Inquisition went on for 700 years and pity help anyone who said God did not exist - you may well have been led to a post, tied up, and burned to death. Then your property was seized by the Church, and ppl spat at your wife etc, etc, and this uber godfull world of the past was a terrible place to try to reach 50 years old.

What would Christ have said if he was among us in those past times?

I'd rather the trainwreck of America ( and Australia ) today, as you mention, where most say they are Christians but never go to church and never behave as if God was their own personal daddy who they needed to guide them reward them, punish them as well arrange for cancer to Go Away, and for giving lottery tickets and to make it rain during a drought. How many believers in God ask him to stop them sinning?

I am old enough to not have any dependence on anyone who has a very weird Godly composition because its a he, male, up in the sky somewhere, and is God the father, and the son, and somehow a holy ghost as well. God the father was the father of Christ, by way of immaculate conception, where Godly sperm somehow made it from the sky to Mary's sex organs. To me, believing all this Roman Catholic Church theology is impossible. All the stories in old testament might give some wisdom where there is none already, but most ppl have to learn from the slings and arrows bullets and IEDs that occur in real life, and maybe some are good, some are bad, and I learned fast to dodge all those things more than most by means of treating ppl nicely and providing enough work for a boss to happily pay me a wage.

We sure are on a journey, and for me, God is not the slightest comfort and when believers hear me say that I do not believe, they often turn away, thinking I am some sort of evil alien. I do not know if its safe to fervently believe there is no God, but many ppl are extreme atheists, but we just cannot know the reality of all of what exists or not. I for one like the fact that the Bible and most religious texts exist, because buried in the fairy tales and bullshit are wisdoms worth quoting where evil is to be encountered. I also like the fact that thousands of times more information has been written about living life since the Bible was written. I refuse to let myself wallow in ignorance. Christ offered good principles to live by, and the New Testament was written 70 years after he died, and there are huge portions of The Story that include miracles, ( eg, loaves and the fishes, turning water into wine ) added by someone without a video recorder to sex up the story to hook people in to believe. The Internet is soaked in fake news and information on all sorts of topics; its human nature to speak and type bullshit, and it always was this way, and if you went back to every previous generation of humans you will find ppl who resemble well known people today, and everyone's existence was a perilous journey, with a shorter and more brutal and pain riddled life. The train wreck of modern godless living really ain't that bad compared to the past. There are more well meaning ppl equipped with noble motives than there are evil ppl intent on murdering us all.

The first people reached Australia about 60,000 years ago, and the drawings on cave walls in north Oz indicated they knew about so many things and lived co-operatively, caring for their young, their old, their women, and occasionally having tribal wars, and all of this went on without any God we might define. It went on for the 60,000 years until it was all seriously wrecked by white men coming in sailing ships, with diseases that decimated the tribes, and then remainders were heathens to be shot or poisoned or rounded up and placed onto reservations so the white men could take it all and divide it with property laws and all sanctioned by God.

So, I invite you to see how a Godless world could be, but when you do, please remember the 10 commandments, and about another 20 that should have been included, and remember the seven virtues and seven vices, and do so all of this without any mention of God, the guy in the sky.

In other words, just leave out the superstitious beliefs.

I guess most would refuse my invitation to think, they are addicted to beliefs without evidence. But I feel free to say this; nobody is going to send a B52 with bombs punish me for being heretical. I am glad not to live in Nth Korea where I guess the treatment for Pca is probably quite lousy, with doctors having no access to anything useful and if I spoke up against how I was treated there, I'd be "disappeared" . There was 99.7% participation rate in the "elections" on NK these last few days, and its not a Godless society,

because it seems as though Kim is God, and he's the nasty old testament type of God who smotes all those sinners with fire and brimstone and Secret Police, who ain't so secret, because they could be any one of us living around us.

Today, in what is the Australian medical paradise compared to NK, my onco doc explained how well Lu177 seems to be going to shoot up the cancer guests who were having big parties in my bones. He gave me a scrip for enzalutamide which will maybe make my Pca express more PsMa receptors so that the next and 4th Lu177 shot will have more effect on the remaining Pca in my bones, which he thinks is getting less. He has OK'd the IMRT to my hip joint for next week, because that has been slow to react to Lu177, and the doc giving me Lu177 says IMRT all helps, and so I conclude I am being cared for by 3 excellent doctors who are completely driven by the urge to heal me. They just never speak of God. There is no need, there is so much science involved in extending my life and there is no letting of blood,

prayers with a priest, and no witch doctors. If my life is Godless, then it seems full of merit, and there is unconditional love from humanists, and few have any fear of mayhem that could come if there was no religion. In 1950s, communists were seem as evil, and the Communist Party of Australia just never flourished here. Stalin and Mao were found to be evil tyrants, and capitalism put food in supermarkets, not socialism.

In Russia and China Christianity is trying to make a comeback but state controlled, so its re-adoption is like the way Capitalism has been allowed to flourish in both these giant countries. Despite the cronyism and nepotism and corruption and power grabbing, Capitalism has raised ppl to a better standard of living, given the poor some hope. But the birthrate is falling, because enjoying consumerism is a better experience than breeding yet more poverty stricken ppl. Roads are clogged with cars, and there is a lot to dislike, but it matters not whether any worship God or not, providing you don't insist on building a theocracy.

So, I have hope that my life will get better despite me getting older and more prone to aging effects, and if anything has given me the time for wonderment then its an abstract thing that is Nature, that which is greater than any of us, but not human in any way whatsoever. Now I think it is highly likely our observable Universe is teeming with life that is able to contemplate its own existence and place within the Universe. The number of stars and planets around them is just so huge, and you only have to have 0.00001% of them able to evolve life, and it would evolve, but be very different to us. So if there was only one true God, and us arrogant humans dare to define God as like us, then where do we include alien life? How would they define their God? Or how would any life define their Devils?

Why bother studying theology? Why not study to be a doctor?

Well, when young, I was never encouraged much to ask these questions and I just didn't mature fast enough and was not intelligent enough to be a doctor because such huge amounts of knowledge must be remembered, and proven to be so in exams at a university. Instead of going to uni, I became a builder, by starting with a carpentry apprenticeship where I felt just like Christ must have when he built something; he was a carpenter, and I followed him into his trade. I don't really know what Christ's work life was like before he became the First Christian, but methinks he and Father Joseph went about building houses and furniture and the company of Joseph & Son probably got a good reputation and they didn't need to place an add in the Galilee Times newspaper "Carpenter wants work, no job too big or small".

Maybe Christ was just bright enough to see how ppl were when he worked for them; that is an education in itself.

At 20, I had given up faith in the catholic church, but never given up on basic goodness, which, if you look, is everywhere you go, no matter what belief the believers have or who is ruling over them, or how corrupt some folks are.

With luck, I might be able to ride my bicycle again soon, if or when my hip improves to allow it. But meanwhile I work on my house to prepare it for myself to live in while getting older, and in a manner where I won't have to repair much in future. I hope you do not mind my shared contemplations about life, and I hope you cope well with your troubles, and find time to be happy.

BTW, you mentioned the link I gave to my website triggered your anti-virus app. You are the first to say so, so I'll watch for anyone else.

Sometimes I try to go to HealthUnlocked and a message pops up saying it suspects this address is a scam, and asks do I really want to go here? I click yes, and nothing bad has happened yet.

Patrick Turner.

RonnyBaby profile image
RonnyBaby in reply to Patrick-Turner

Your mini essay on theology is based on a lot of historical fact. Indeed, the MAN-made religions have always led to conflict.

I was born a Catholic and gave it up a long time ago.

I spent a long time researching the Historical Jesus and found that there is so much that is missing - so much that doesn't make sense.

I know how and when and why the Bible was written.

There's a few things that have made me reconsider my past rejection of God.

First, there are a lot more outstanding people out there that truly believe. That is humbling to me because I've always been right.

Then there's the supernatural. There is abundant evidence about ghosts, demonic stuff, psychic mediums, mystics, clerics and physical/spiritual entities to simply say we are just consumers born to die, for nothing at all.

Like Mulder said (and Project Blue Book), there's something out there.

There is powerful evidence that spooky is out there.

What does that make us?

I am still searching for answers and will never know 4 sure - until I crossover.

Patrick-Turner profile image
Patrick-Turner in reply to RonnyBaby

Hi RonnyBaby

Thanks for the reply.

You mention ""There is abundant evidence about ghosts, demonic stuff, psychic mediums, mystics, clerics and physical/spiritual entities to simply say we are just consumers born to die, for nothing at all.""

Well, here is probably the wrong forum for me to say why I fully disagree.

We cannot avoid being a consumer no matter what we believe, or what epoch of history we live in, all life consumes other life, or the products of life. I have ZERO idea why the Universe exists. But it just does, and I don't need a reason.

I worked to live, so there's the reason why I worked. I did many things because I felt good, and made others feel good, but just why existence exists with me in it is a total Miss Terry, and so what if none of us have a valid reason? Do we need to have a reason? I don't. We find ourselves alive, and I for one just cannot sit around all day and twiddle me thumbs. Many like to think we are a very smart species, but I don't think so, judging by the number of problems we still need to solve, like finding a cure for Pca, living sustainably, being happy with less, not more, not wrecking the environment, and 10,000 other things.

RonnyBaby profile image
RonnyBaby in reply to Patrick-Turner

Amen 2 that ....

You may also like...

Advanced and aggressive Pca

you who have advanced pca with high psa. I’ve posted a few times in here about my father but I’ll do

Should my advanced micrometastatic treatment be more aggressive

to intermittent adt with firmagon only . my question is this aggressive enough treatment?

My history Pca

both were negative. I’ve got an ND oncologist on board and urologist. After reading these posts, it...

An Update On My Father's PCa - Test Results/Treatment Plan

Adenocarcinoma PCa. His recommended course of treatment is 8 weeks of IMRT (after 8 weeks of ADT)...

My Oligometastatic PCa Journey Continues...coming up on year 9!

or fewer mets) prostate cancer treatment was the same as advanced metastatic prostate cancer. There...