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SRT - update - results 03/07/2019

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hi all

I thought I would start a fresh thread as things have changed dramatically.

My PSA has rised to 0.24 and I have now started HT (casodex with two three monthly injections of Triptorelin).

Back story.

PSA rose to 4.0 early last year.

Biopsy suggested G7 (4+3).

RP surgery (bilateral nerve sparing) confirmed the Gleason with staging marked as T2c, with 3% of organ marked as tumour.

PSA rose to 0.17 at the end of Feb and 0.24 at end of March. Total 7 months

Aww crap.

Saw the onco on Tuesday.

Quite direct, told me straight out I was going on HT (6 months) and RT (months 4 and 5).

Flatly refused to discuss PSADT / nomograms / outcomes / forecasts on the grounds that "every case is different". Basically "we will treat you and respond / react / change treatment according to your blood tests as and when". Told me no scans as it would be too small to detect and could never tell if local of spread. I worry that he is pessimistic but won't let on because my records note my anxiety.

Got given all the info about side effects which I already knew.

Basically I feel on a conveyor belt now.

Unfortunately I am a high functioning pessimist at the moment so I have written myself off given the early (ish) relapse and the (relatively short) PSADT.

I need someone to shout at me and tell me to stop being a worrier and get on with it.

Cushions

VascodaGama's picture
VascodaGama
Posts: 3011
Joined: Nov 2010

Welcome back. The salvage treatment sounds solid. Starting ADT and then follow with RT, 3 to 4 months later is good. I wonder how long they said that you will be on ADT. Some doctors keep the patient nearly two years on ADT which I think it to be too long and unnecessary in a case like yours. Stopping at six months would allow you to check the real RT outcome at one year from the start of the treatment, apart from saving you from the ADT side effects. You can always resume ADT later if the results show RT failure.
I would recommend you to know in advance what to expect (feelings, emotions, etc) from the effects of the ADT. It will change your daily routine and you will counter the effects better if you know what to expect.

Let's hope for a good outcome and the less worse experiences from the side effects.

Your story is in here;

https://csn.cancer.org/node/308573

https://csn.cancer.org/node/310424

 

Best,

VG

contento
Posts: 76
Joined: Jul 2017

Hey Cush, sorry for the results. As you know I also went through salvage radiation w/hormones. It worked so far , that was 2.5 years ago.

I'm surprised the doc doesn't want to do a endo MRI scan of the pelvic area . This was how my cancer was located and my psa at the time of my scan was .2 ng/ml.

Finding it did change the radiation treatment protocol by focusing more on where they saw the cancer.But they also did radiate the pelvic area as well.

obviously if they don't locate the cancer they'll still do radiation covering the pelvic area hoping it has not spread beyond the scope of the treated area.

Hope the radiation works out, I'll be thinking about you..--Good Luck -contento

 

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

FWIW, I agree with your doctor's treatment plan and with Vasco. The only thing that seems odd about your case is your persistent PSA with only 3% involvement. The tumor must have been very close to the capsule wall.  It is obvious that some cancer cells must have escaped the gland and has spread to (hopefully!) adjacent tissues. Believe me, you want to treat this aggressively before it progresses any further!

Be aware that the HT will likely make you slightly depressed and very moody. You may have experienced this to some extent already. I have read that hormone levels drop while cancer cells are gobbling up testosterone and producing PSA. I don't know that for a fact, but I do know that the past 4-5 years have been something of a living hell for me... just now getting my head above water (ADT to end by year's end).

HT, RT, the whole darn thing, is all very annoying and worrisome but is tolerable. Even after it is all over with, you may still be haunted by concerns about recurrence. It happens to everyone who has had any kind of cancer.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

I loved that line, Hewho: "A high functioning pessimist." I would add a man with insight, also.

It is good for you that you got a doctor willing to be a bit dictatorial, since his responses mirror Best Practices for your particulars in the US. I also agree that imagining in cases such as yours is usually a wast of time.

Better getting cured now than hand-wringing for months and months. Be glad you have the doctor whom you have,

max

Josephg
Posts: 158
Joined: Jan 2013

Hi Cush,

I'm sorry to read that your RP failed.  I know what you are going through regarding the emotional roller coaster ride, upon hearing the news and then looking forward to the next phase of treatments.  I've been there, and I'm still around.  :-)

I believe that your medical team is recommending good next steps, with an aggressive approach (simply my layman's opinion, based upon my similar experiences, and not as a medical professional).  In terms of what you may expect to encounter/experience during this next phase of treatments, I offer you to view my experiences located in the link below, and you can add them to your inventory of collected and reviewed information.  Of course, every instance of PCa is somewhat unique to each individual, and one's experiences do not necessarily fully map to another's experiences.

http://csn.cancer.org/comment/1414101#comment-1414101

I wish you the best of outcomes on your journey.

Steve1961
Posts: 242
Joined: Dec 2017

i am seeing mt surgeon Tuesday with many questions before I decide.on surgury   One  question will be if RP fails would I or anyone be kicking themselves in the butt for not just doing radiaction treatments .

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Steve,

Everyone reacts differently to things, successful or unsuccessful. The only person who can say what you would do is you. If you think RT better, do RT.

For non-metastatic PCa, surgical removal is the best thing available toward achieving cure; I read this at the Harvard Medical School oncology site recently (it said that first-line RP has a minor, better chance of 5 year freedom of disease than RT).

No treatment has any guarantees. None of this has a warranty.  But a trace of optimism never hurt anyone, and might do you a world of good, regardless of what decision you make,

max

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Thanks for the input folks.

i am happy with the treatment plan and so far side effects from the pills are limited to a change on body odour and mood swings.

I am very aware of what is to comes side effect wise. Have mixed feelings but better this than the alternative!

The fact that I was t2c n0 m0 3% yet still had a psa rise bothers me but as the Prostate Cancer UK nurse said it could well be just a few escaped cells. It could be worse. Who knows?

I am led to be they do not do diagnostic scans as micro mets are too small. They will do planning scans for the IMRT when ready.

I just have to press on.

cush

 

cf
Posts: 3
Joined: Feb 2015

Hi Cush - definitely sorry to hear that your RT failed.  I think that happened to a lot of us, and it is kind of a drag.  I think that you are taking the right approach, but maybe that is just wishful thinking since I have been in the same boat.  I got diagnosed 6 years ago, Gleason 4+3 and it was a T3bN0M0.  Well I was one of those who said, "at least I got the good kind of cancer." :-).  Did an RP and hoped that it was over.  But hey, 4 years and 10 months later it reared its ugly head again.  I went of for 33 days of RT and 6 months of HT (Lupron).  At the end of the RT,of course my PSA was  about zip, but so was my Testosterone and libido!  Woo hoo! 

Anyhow, the place where I had the radiation done, has a program that is truly wonderful and maybe you can find one where you are.  Basically they call it BfitBwell (google it).  It is an exercise program for cancer patients and it really is great for you physically as well as mentally.  The program had a personal trainer assigned to you twice a week for an hour for three months.  The PTs were all cancer PT specialists.  It really has changed me a lot since I am now in the habit of going to the gym 5 days a week to work out. There is a lot of research being done with respect to cancer and exercise, and all of it says it really can make a difference.  And yes, all of the lupron side effects are a drag, and the radiation was not particularly fun either.  And sometimes I feel a bit down but I am  a lifelong optimist with a great outlook on life.  My understanding is that the residual effects of the drug will wear off within a year so no worries.  Keep the faith bro, and carry on!  Try some exercise if you are not doing it already and it will help!

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hi all

Got sidetracked :)

@cf - yeah - it seems to be about 30%? Problem that stresses me is that I did it in less than a year which doesn't look good for 15 years. It sucks because I am in a horrible grey area with a G7(4+3) T2cN0M0 with no margins but a relapse within a year. I understand that <6 months and you are really stuffed but <1 year with what seems to be a quick PSADT (the onco refused to tell me what he thought it was but to be honest, there were only two data points - 1.7 at 8 months and 2.4 at 9 months-ish) I feel like t is Russian Roulette. As you say thought it was caught quick. Just have to pray it is localised. Got too many thoughts going on in my head at the moment :(

hewhositsoncushions
Posts: 274
Joined: Mar 2017

What I find hard is so many people saying "don't worry - you will be fine" when I have at best a 50/50 chance of RT working - does anyone else find other peoplea optimising hard to take?

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Those who haven't had cancer - and know little about it, want you to know that they care, but don't know what else to say. "Be strong, and you'll be fine" is what's usually said. I suppose it sounds better than "ugh, glad that didn't happen to me!" I know cancer patients get so sick of hearing recommendations like "don't eat sugar or dairy" and "avoid red meat".  And of course there are those who will try to convonce you to drink only alkalized water or go on a ketogenic diet.  And my favorite is "you should see my friend's oncologist, he cured her".

In the end they want to help somehow. Maybe we should just say, "want to help? Remain my friend even when I'm sick".

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Hewho,

Rob's last caption summarizes it all: people are trying to be encouraging.  Most people have no familiarity with cancer, just as they have no familiarity with medicine generally.  Hence, the common statement that they were "shocked" when they learned they had cancer.  Why ?  25% of all people get cancer, so why is it shocking ?  Some cancers kill n a few months, some usually never kill.  A basal cell skin cancer, for instance, is so minor as to be almost irrelevant.  But they are ready to faint.... Studies have shown that about half of all Americans cannot name the Vice President. Over 33% of Americans cannot came the three branches of US federal government (Executive, Legislative, Judicial), and a significant number cannot name ONE.

I was in a graduate school history class one day (a course toward the M.A. Degree), and a girl next to me asked, after the teacher said someting about St. Francis, "Excuse me -- that 'St., Francis' the professor mentioned: Would he have been a Catholic ?" She was 100% sincere, and 100% clueless.  Gun critics in the US routinely propose legislation, when they overtly know nothing about gun specifics -- NOTHING.  Journalists are similiar; most routinely cannot differentiate between a semi-automatic verses automatic weapon at all. Most don't know a revolver from a semi-automatic, for that matter.  Profound ignorance is the norm.  But they are the "experts," and shape public opinion.

My former boss, retired Army, recently let it slip that he was "sorry I was castrated." I asked what to hell he meant, and he said "You had your prostate removed, right ?"  He thought that meant removing the testicles. I have heard other men say this also.  Most men cannot tell you where the prostate is, or what its function is.

My mother-in-law tells me all the time what to eat to be healthy, and says I should not be taking statin drugs....this from a woman who has never had a medical class in her life, not even a biology course.  But she knows better than my doctors.  And, she is 100 pounds overweight.  She won't use a cell phone, "because they cause brain cancer," but uses a cordless phone all day long, despite the fact that the cordless phone has more wattage than the cellphone. I find it hard to deal with morons.

What I find most difficult is dealing with are people whose first question after hearing that someone has cancer is, "How long does he have?" As if every cancer is fatal.  No wonder these intellectual giants are ready to believe that reefer cures everything, or that someone got leukemia because their neighbor put out some Roundup one day, back in 1997,or because they had a chest X-ray once....  A judge in Los Angeles ruled recently that California must put Black Box warnings on COFFEE, "because it causes cancer." [Superior Court Judge Elihu Berle. AP article from 30 March 2018, later run by CNN and all the other major networks]  The judge's lunacy is being appealled, of course.   Coffee, one of the most ancient foods known to mankind, and evaluated to actually have numerous helath benefits.  My brother bought a pocket knife recently, -- a piece of steel. The label said "This product contains materials known to cause cancer in California." When I go to the hardware store, half the power equipment has tags saying, "Not legal for sale in California."  Areas that make reefer legal, or that give out free needles to heroin addicts, warn us that coffee is fatal. 

In 2010. a US Congressman (Hank Johnson, D-Georgia) was questioning an admiral about the desire to put more military personnel on Guam.  The congressman seriously and repeatedly expressed his concern that too many people on Guam might overload the island and cause it to tip over.  This is readily available on YouTube.  He later tried to backtrack this, when he learned that islands aren't like icecubes floating in the ocean.

Beam me up, Scotty.

max

MK1965
Posts: 177
Joined: Jun 2016

Even if coffe is cancerous, I will still continue to enjoy it, black and strong without sugar, like I always did.

I work for company from CaliforniA. That state has different rules on almost anything.

I am glad, I live in Texas.

Mk

hewhositsoncushions
Posts: 274
Joined: Mar 2017

@ Vasco - On my side of the water we had people that chose to leave the EU and believe the curent incumbents has their best interests at heart :) You ought to alert the Californians to the lethal dangers of dihydrogen monoxide as a public service. Deadly stuff. Everywhere. Can't escape it, yet fatal!

@MK1965 - I too work (contract) for a CA company. It is a different planet out there, even ignoring Hollywood, which is a different planet even within CA.

Thanks for raising a smile to these stressed chops!

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Thanks, I literally LOL'ed. Seriously!

Truth is stranger than fiction... sadly.

Grinder
Posts: 440
Joined: Mar 2017

Ditto to everything you guys just said. :D

The public's general knowledge about cancer, firearms, survival, politics, etc is appalling. Yet with our "everybody gets a trophy" mentality, everyone EXPECTS to be treated as a knowledgable authority on ANY subject, especially celebrities. Just bevause they pretended to be someone else in a movie, they are experts about everything now.

Even though you guys piss me off sometimes... I have learned a LOT from this forum, and reading into the archives. After listening to you guys, I realize how much disinformation is out there... and cancer snake oil and sideshow barkers.

 

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hey guys

Quick update - have an early August date for my second jab. No other medical involvement as yet.

Physical - tiredness comes and goes usually at unexpected times. No other issues.

Mental - all over the shop. I wake up every morning thinking "DUCK, I have cancer" and stressing that having micro-mets is a given. The only times I feel freedom are when I drink (red wine once or twice a week with consequential negative emotional impact several days later) or when I do Qi Gong and meditation. I cannot work out if this is the HT messing with me or just a proportional reaction to how badly I am DUCKED.

Trying really hard on the health regimen but self sabotage sometimes ("what's the point?").

Any suggestions to keep afloat?

C

Grinder
Posts: 440
Joined: Mar 2017

I can only tell you how I handle crises in my life, HWSOC...

I do not drink anymore, I dont do drugs, I dont need anti-depressants... not because those things are unnecessary, I just do not need them.

I deal with mental stability from both the Inside the head and Inside the brain and the Outside of myself.

From the Inside, I have learned through meditation from various disciplines how to focus off problems that cannot be solved, and "blank out" thoughts that drive negative emotions. You may have heard the expression that your emotions are like baby ducks. They follow whatever train of thought or experienve is before them. If you watch a scary movie you get scared. If you watch porn you get horny. If you even think avout porn you can get horny... so if you think depressing thoughts, you will get depressed. 

The trick if inside tge head is to control your thought. Simple meditation teaches you to focus on nothing. You start by dismisding a thought as soon as you think it. Just stop. Make your mind blank again. Some people use a mantra to focus away from thought, but you can effectively blank your mind just by stop thinking. Then when another  thought comes into your head, blank it out again. If you find you need to focus on something else to keep from thinking depressing tgoughts, that's ok. Some people read books. I know Catholics that pray the Rosary as a successful mantra, though I would never do that. But you get the idea? Dont let  thoughts that create depressed emotions into your head and get them out as soon they do by FOCUSING on something else.

Then there's the inside the brain. Next comment

Grinder
Posts: 440
Joined: Mar 2017

There are neurotransmitters in our brain we call happiness chemicals. The most commonly recognized one is dopamine. Dopamine levels can affect mood and general feelings of pleasure and happiness. Here is s description of low dopamine levels...

"Low dopamine levels can lead to a lack of motivation, fatigue, low libido, sleep problems, and memory loss.  Low dopamine plays a role in depression, ADHD, and addictive behavior."

 Well, that doesn't sound good!  Notice it said "addictive behavior". Meth users are especially vulnerable to addictive behavior. The body functions best when dopamine levels are consistently moderate. But certain drugs trigger an inordinate amount of dopamine and other "happiness chemicals" like serotonin and "pleasure centers". Eating a chocolate bar can trigger a couple. Sex can trigger more. Cocaine can trigger more. But Heroine and Meth can trigger an avalanche. The danger though, Meth eventually disables the body's own ability and the addict cannot stimulate these pleasure centers without meth... then you have the classic and sad case where the meth addict is a paranoid delusional nut case hiding inside his house with lights off and curtains drawn, waiting for his next fix of meth so he can feel happy again.

BUT this just illustrates my point about dopamine, etc. I have to wonder how ADT chemicals affect dopamine production or its action. 

My first thought is to increase dopamine levels. EXERCISE is a big one... It increases dopamine, serotonin, endorphins... which is why exercise is always encouraged. Of course we dont feel like exercising... but when we do we are glad we did.

Then there is diet, of course...

"Of the chemicals that make up dopamine, none are more important than tyrosine. In fact, tyrosine is considered the building block of dopamine. Therefore, it is important that you get enough of this protein. There’s a large list of foods that increase Tyrosine, including: Almonds, Avocados, Bananas, Beef, Chicken, Chocolate, Coffee, Eggs, Green Tea, Watermelon, Yogurt." 

 But all this may not help if the chemical used to suppress testosterone production in ADT is also supressing dopamine and serotonin production. Therd are probably naturopathic remedies that can increase  these levels. There is also a lot of snake oil remedies out there that claim to increase them. If you find one that works please let me know.

Maybe one of the other guys knows how Hormone Therapy interacts with dopamine et al production and processing? It is worth a discussion since mood seems to be an issue in ADT.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I don't know if they interact or even if ADT affects dopamine, but when I first read the beginning of your post, "Low dopamine levels can lead to a lack of motivation, fatigue, low libido, sleep problems, and memory loss.  Low dopamine plays a role in depression..." the first thing I thought was "wow, that sounds just like ADT".

Grinder
Posts: 440
Joined: Mar 2017

We all know where this is going... Relationships

That includes relationships with other people of course. But as a Christian the focal point is in my relationship with God.

I should probavly speak to that since most people have a distorted view of Christianity.

Quite simply, it is a relationship with God in Christ. Its not about sin, or hell, or especially the Ten Commandments...

Jesus said this...

Come unto me, all ye that labour and are heavy laden, and I will give you rest.

Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.

For my yoke is easy, and my burden is light.... Matthew 11

This is no illusion on my part. I have discovered this to be true... It is the third wheel on my tricycle, and when I have reached the point where I am at a complete loss to meditate my way out of something, or fail to raise my dopamine levels, I can sense the "Comforter", as Jesus called the Spirit, lift me up and buoy my own spirit through. It doesn't happen all the time, just when it's necessary.

I have a lot more to say about this subject, but the last time we discussed spirituality, the administrators moved the conversation to another forum. So I will just leave at at this...

Also my relationships with family and friends is very important... my wife is an incredible woman, so that helps a lot... BUT it is hard to maintain healthy relationships in this messed up world, so I treat them as a bonus when I am lucky enough to know godly, contented people. 

Hanging out with miserable angry people wont make us feel better, that's for sure.

I don't know if any of this helped, but I do think it's worth a discussion how Hormone Therapy affects dopamine, sertonin, and endorphin production.

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

I enjoy reading your comments.  The human side and indeed our spiritual side are every bit a part of our journeys with prostate cancer.  I have never been alone in this journey.  I have my family, this site, and the specialists.  I have never let this cancer get me down from PSA; DRE; biopsy (22 samples); blood in your semen; RP; recovery; pathology; incontinence; no more semen.  I think I have said this before; a giant is standing in front of me today, but he is not bigger than the God inside me.  I may lose this battle, but I have to remember I have to live this life, to get to the next one.  Thanks for your comments Grinder.

VascodaGama's picture
VascodaGama
Posts: 3011
Joined: Nov 2010

Grinder,

Your above posts are GREAT. I think you have helped many reading it, even those that do not participate in the forum. And, yes, ADT disturbs many of the regulators at our brain, which enter into a vicious havoc cycle trying to balance what is lacking in its natural behavior. Brain uses hormones to trigger signals/commands that will travel throughout the body, and ADT disrupts these. The one most noticed by the majority of patients on ADT are the hot flashes due to disruption of our body temperature clock. Now you have it ... now you don't, now you have it .... now you don't. This is the brain trying to fix the problem.

I like the way you explain the meaning of "Meditation". After my surgery in 2000, I sort out my emotions by blanking out the thoughts that were driving me negative ideas. It was my wife that at the hospital told me to think of the cancer as balloons that I would seek out bursting them one by one with needles. I follow the tactic and it worked. I never thought it to be part of meditation but I learn it now from your above post.

Thanks,

VG

 

hewhositsoncushions
Posts: 274
Joined: Mar 2017

I appreciate the insight, guys. It's been quite insiduous, this sneaking up of the dark moods. This pragmatic view lessens my tendency to blame myself for being weak.

I've found that I am better when I am active on something constructive, which is why I am worn out now having relaid half my patio.

Interesting that several people have mentioned faith as a means of experiencing their situation. I think I need to reflect on that because I've kind of lost faith all round at the moment.

One thing I can say having got back into Qi Gong is that it has had an impact on my physical tension even after just a few days. Definitely something to consider. There are "no faith" forms of Qi Gong which put aside the mystic elements for the practical so it is open to everyone these days.

C

Grinder
Posts: 440
Joined: Mar 2017

Yes... I practiced yoga in the past devoid of its religious elements, because it is useful stretching exercise. Similarly, meditation, martial arts, acupuncture, and other Eastern arts are useful when seperated from their traditional "mystic" content 

Eastern meditation includes mantras and mandalas to focus attention and expunge thoughts from the mind that create negative emotions. The most familiar mantra repeated over and over is "Om mani padme hum" simply means  "The Jewel in the Lotus" . But other mantras are actually prayers to Hindu deities Shiva, Ganesh, Krishna, Rama etc. I was startled to learn long ago that a common mantra is actually a prayer asking familiar spirits to enter you. 

That was when I practiced the art of blanking the mind instead of focusing on mantras. de Gama's wife makes an excellent metaphor to describe it. When a thought enters the mind, pop it like a balloon before it creates a negative emotion. Then after a few "balloons" are popped, a homeostasis is achieved of calmness. Its like a reset button. If more trepidation creeps up, hit the reset button again.

After all, once we have decided and arranged for best treatment available, stress brought on by negative thinking is COUNTER PRODUCTIVE. We can do even more damage by giving in to stress, and  not popping the balloons.

 

Grinder
Posts: 440
Joined: Mar 2017

I am not sure of the exact mechanism, but if ADT is indeed interfering with "regulators" as described by de Gama, then I figure the same agent that inhibits the production of testosterone by the testicles and adrenals, also inhibits production of dopamine in the brain and release by the hypothalamus, and production of serotonin in the brain and GI tract.

Still curious though the exact machanism of the ADT. I get the mechanism behind androgen itself, but where does the interference take place? Is it the pituitary gland that is chemically influenced NOT to send neurotransmission to the testicles to begin testosterone production?... or does it interfere with the transmission AFTER it is sent? 

I would like to check this out further out of curiosity and see how it relates to the interfefence with dopamine production. Does it inhibit the brain's perception that "dopamine is needed, begin production" the same way it inhibits the pituitary gland when it says "testosterone is needed, begin production in the testicles". Curious.

hewhositsoncushions
Posts: 274
Joined: Mar 2017

I dig the mystical element but I can separate the two as I am a kinesthetic learner / doer, learn best by doing and keep the deep thinking to the feet up with a glass of red.

I think you are describing a more Vipissana mode of meditation than transcendental. I'm only a beginner but I lean to the former but use simple phrases to keep focus.

I am working on the visualisation thing - I've read several stories of people using visualisation to effect change. My problem is patience. "All his life has he looked away... to the future, to the horizon. Never his mind on where he was... what he was doing."

I think the hormone thing is really complex - Estrogen, Progesterone, Testosterone, Norepinephrine and Epinephrine, Serotonin, GABA, Dopamine, Acetylcholine, and Oxytocin and more. Its a merry go round of interacting mechanisms. Some we can work around by diet, behaviour amd emotional regulation. The rest? I guess willpower....

Grinder
Posts: 440
Joined: Mar 2017

Yes there is a difference in the way I approached meditation in the 70s and now. Back then it was all about altered states of consciousness. I don't regret what I learned about reality and other planes of existence... but looking back it was a dangerous game to play. I never cut completely loose and astral traveled, but I did sense the difference between my being as a spirit, and my existence inside a human body that I used to interface with the physical plane of existence. I was afraid to completely let go for fear I couldn't come back.

Keep in mind this was happening at the same time I was an undergrad intern in Experimental Psychology, which dismissed any idea of other planes of existence in favor of an empirical approach to the mind and brain. Quite the conflict between education and experience.

But nowadays, I use meditation technique as described to control emotions. I would never advise anyone to seek altered states anymore, too many lose their grip on reality. Its like treading water, you constantly have to reassure yourself, or you could sink into despair. Like treading water, if you stop you start sinking. There is no "rest". Now I understand what "rest" is when Jesus says:

"Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls."

 I dont have to tread water anymore... I can rest in Christ.

Anybody reading this that doubts other planes of existence... well, ok, no problem... we can still be friends.

So yeah, I stay away from transcendental meditation now, and use meditation technique of "popping balloons" for mind control.

Grinder
Posts: 440
Joined: Mar 2017

If I was confused before, now I am really confused... because another hormone is playing a part in this circus... Prolactin.

"Dopamine and testosterone are intimately linked hormones. When one is high, the other will be high. From everything we have learned so far, high dopamine also correlates to lower levels of prolactin.

This is a clear reason why so many bodybuilders consider it their divine duty to keep prolactin levels low, as this implies that dopamine levels will be high and hence testosterone levels as well.

Prolactin Image 4

Prolactin inhibits gonadotropin-releasing hormone (GnRH) secretion. This hormone directly stimulates the Leydig cells in the testes to produce testosterone. Higher levels then directly slow formation of new testosterone steroidal hormones.

Testosterone’s relationship with dopamine lies in its ability to stimulate certain areas of the brain that release dopamine. As dopamine directly controls the release of prolactin, we see that high prolactin is almost always connected with low testosterone and low dopamine and vice versa.

This is the bidirectional relationship of regulation that to a great degree, controls levels in men (and to a much lesser extent in women).[11]

Grinder
Posts: 440
Joined: Mar 2017

Transcendental Meditation was a safer alternative to LSD and other mind expanding drugs... By the time we were dropping, the days of Owsley and pure LSD were long gone and it was being cut with speed and other drugs... the LSD sent you into altered states, but the speed kept you hyperactive for hours... I lost 15 pounds in one instance of particularly bad mix. No lie. So TM did give us a safer alternative, but I wouldn't do either today.

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Well I have to confess that I am looking into psylocybin as a therapeutic aid. There have been studies that show it has benefits for anxiety in general and for cancer patients in specific. I'm punting for a trial later in the year and if that fails, there is always lots of research and a "trip" to Amsterdam :)

 

Grinder
Posts: 440
Joined: Mar 2017

I am wondering if you are better off with your "qi gong" exercises than psylocybin... the problem with the latter... if it works, your system will become dependent on the external trigger to get the same results in the future. Even though psilocybin occurs naturally, doesnt mean its a naturopathic remedy... Exercise, however, is naturopathic.

This is from WebMD describing benefits of exercise...

 

"Improved self-esteem is a key psychological benefit of regular physical activity. When you exercise, your body releases chemicals called endorphins. These endorphins interact with the receptors in your brain that reduce your perception of pain.

Endorphins also trigger a positive feeling in the body, similar to that of morphine. For example, the feeling that follows a run or workout is often described as "euphoric." That feeling, known as a "runner's high," can be accompanied by a positive and energizing outlook on life.

Endorphins act as analgesics, which means they diminish the perception of pain. They also act as sedatives. They are manufactured in your brain, spinal cord, and many other parts of your body and are released in response to brain chemicals called neurotransmitters. The neuron receptors endorphins bind to are the same ones that bind some pain medicines. However, unlike with morphine, the activation of these receptors by the body's endorphins does not lead to addiction or dependence. "

If I remember correctly, psilocybin is an hallucinogen, not a narcotic. So it will not be as addictive physically as narcotics, but can still be addictive psychologically. In other words, like the meth illustration before, narcotics like meth dependence can actually disable your body's mechanisms for producing endorphins, so that a meth fix becomes the only way to experience "happiness" . But you can still become addicted in the sense you will not bother to exercise, diet, and naturally raise your endorphin levels because its way easier to pop a pill, smoke weed, eat a mushroom, or whatever.

I have never heard of "qi gong"b efore, so I binged (googled) it...

"Yin qigong exercises are expressed through relaxed stretching, visualization, and breathing. Yang qigong exercises are expressed in a more aerobic or dynamic way. They are particularly effective for supporting the immune system. In China, Qigong is used extensively for people with cancer."

 If you can find a school that emphasizes the breathing techniques and exercises instead of the metaphysical mumbo jumbo, you will be way better off than using psilocybin.

Im just saying this as a friend, and by no means an expert on any of this.

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hey

I appreciate the advice. I'm plugging away at the meditation etc. Need it right now as a struggling to face going to work even though I know that even in the worst case I probably have five years. I'm going to have to give myself a kick up the arse I think.

P

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hey folks

Quick update - going well with the meditation and Qi Gong. Finding the meditation a really good immediate help but the Qi Gong is a learning experience.

I'm also expanding my supplement based to include capsaicin, ginger and green tea.

When I keep off the booze, my mindset is improving really well.

Interesting to read another post Vasco made where he believes stress is what started and progresses his disease. My recurrence started after an awful Xmas where my Mum was really ill with illness triggered dementia whilst staying with us.

I've determined that getting rid of the mindset that generates the stress is my number one goal at the moment, even it it means saying "no" to other people, even those I care about.

I've realised that looking after your mind, body and soul takes a lot of time, so it wil be interesting to see how I progress.

C

Grinder
Posts: 440
Joined: Mar 2017

"even it it means saying "no" to other people, even those I care about"

Something I dont recall seeing in this forum... stress brought on by the "needy" people in our lives.

We all have them, right? People who just don't have the drive to sustain themselves, emotionally or physically... and have been leaching off family and friends. Sometimes they really are helpless to help themselves... but some times...

If it were me, I would put my condition ahead of needy folks, because if you don't take care of yourself, both emotionally and physically... you won't be any good to them in a pine box.

The ones that love us will understand. The ones that don't, well...

 

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Quick update:

Still plodding on. Weight stable but finding it hard to get to the gym as mentally tired. Meditation and Qi Gong going well. Going part time at work next week.

Only down side is still waking up every morning thinking I'm f*cked. I still hang on to negative information and dwell on it. An example was Vasco's comment in an adjacent thread about PSADT < 6m. Me hitting BCR after 8 months (1.7 at month7 and 2.4 at month 8 post RP) is a real mental drag.

I have a long wait until September for the atual RT.

I have to use all my willpower to just hack away at life some days.

Still, some days and things are good. My family loves me, The weather is good. I have a job and I have time to make sure they are going to be cared for when I am gone.

C

VascodaGama's picture
VascodaGama
Posts: 3011
Joined: Nov 2010

Cushions,

You should realize that you are under the effects of ADT and these may not be noticeable but are there and pinching your feelings constantly. Some are more pronounced on occasions and one needs to be mentally prepared to recognize it as not our own natural, adopting a counter posture. The PSADT index facilitates in grouping cases that should have earlier or later interventions. You are in the "earlier" group so that you did already start the combination salvage therapy. RT will later give the final blow to the bandit.

Just continue plodding.

VG

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hi Vasco

The voice of wisdom and reason already.

I am slowly starting to realise that my hormones are kicking in more. I am starting to struggle with weight loss (comfort eating as well) and moods are all over.

I had a bottle of red last night and your comment in another thread about intervention over 2.0 often fails bothered me a bit.

I know it is a numbers game and I am a bit OCD about such things.

Thaks again for your support.

C

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hi all

Had planning appointment letter. Due to go in first week of August.

Need to confirm availabiltity and AM/PM preferences for RT and also mention i have stress related IBS.

Given lots of information about low-fibre diet and micro-enemas .

Summer holiday abroad won't be as food and drink related as I hoped but hey ho.

The letter did make me wobble as it is finally "real" whereas up to now I was in a happy vacuum.

Still, as I posted earlier, today is today and I am still breathing.

Have told work which was a worry as I am a contractor but I made it clear I can still work around it and am covered by disability law even as a contractor. They were fine for the moment. Time will tell.

The other good news is that I have almost broken the bad habit of researching life expectancy but I still backslide now and then.

H

PS any good tips on low-fibre diet and how much alchohol I can consume?

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hi all

Quick update.

Day 13 of SRT. Staff are great and I have a routine now with most sessions just after lunch.

No bladder or bowel side effects as yet pain wise but getting looser by the day.

Main issue this week is extreme fatigue. I went back to the gym after a three week break at the end of last week, had a stinking cold over the weekend and since then my batteries are at about 4%. Dopey, hard to get moving, thick head and so on. Not sure if it is just the cold playing out slowy or actual RT fatigue but it sucks.

I want to go back to the gym but I am scared it will put me on my back.

Didn't hep the additional stress over the weekend that my son left to go to university on Sunday. Onlly an hour away but it still feels like I lost a limb.

Cushions

VascodaGama's picture
VascodaGama
Posts: 3011
Joined: Nov 2010

I am glad for knowing you have started the RT. Surely you will be experiencing some side effects but all will resolve within a couple of months once you have finished the treatment.

Best wishes for a good outcome, meaning the knockdown of the bandit.

VG

 

lighterwood67's picture
lighterwood67
Posts: 207
Joined: Feb 2018

Well, you maybe a high functioning pessimist, but to me you appear to be a person with their head screwed on correctly and doing everything you can to thwart this cancer that pivots from time to time on us.  On the lighter side, high functioning pessimists, when things go right, are never disappointed and in most cases expectations are far exceeded.  I do not know you, but we have a common enemy.  I have read a lot of your posts.  All give me food for thought.  Thanks for taking the time to do those things.  Thoughts and prayers on your journey.

Georges Calvez
Posts: 272
Joined: Sep 2018

I went through 66 Grays of radiotherapy and it was unpleasant rather than painful, I think I was one of the luckier ones as others I know had it far worse.
Right at the end it felt hot when I peed and passed a log, my pull ups went a bit pink as well.
That went away after a few weeks, I had some funny pains from time to time after that but everything except this weird tingling in my legs when I wake up at night is gone and this is fading fast.
There is the possibility of long term side effects, some of which are quite nasty but they are thankfully rare.
With this bandit you have to live day to day at the beginning but as the weeks turn into months and years, the hope waxes that you have left him behind you.

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hi all

Thanks for the kind words above.

Slight wobble this morning.

I woke up this morning to a small bloodstain surrounded by a pale stain where my penis would have lied when sleeping face down.

I did not wake for a pee overnight.

We could not find any skin damage to explain this.

I suspect this is an early side effect.

Have not noticed any blood in urine flow to date.

I will notify the Radiologist and wear pads overnight.

Three weeks in.

is this usual?

Cheers

C

Georges Calvez
Posts: 272
Joined: Sep 2018

It is a possible side effect.
When I had the RT I was told to use Dove soap and put almond oil on the skin to stop the burning. I continued with my normal baby show gel, I have sensitive skin, and the Dove and almond oil stayed on the shelf unopened as I had no burning at all, the prostatectomy scars became a very angry red.
Some people have terrible side effects, there is no telling if a patient will go through the treament with few effects or lots.
I have several pages, unfortunately in French, listing all the possible effects, I looked them over and thought, Oh f**k, and then nothing much happened.
There is a link here to a page about bleeding, I hope yours clears up quickly.
https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/late-effects-pelvic-radiotherapy/blood-in-urine.html

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Hi George

Thanks. I am very lucky so far if all I have had is one bleed. Things feel a bit twingy down below and I need to pee a lot but that is it.

Main issue is mental - after an exhausing week I am felling vulnerable and so fed up at the moment reading about recurrence rates post SRT being quite high and mean survival time being a bit rubbish after SRT relapse. My brain is not my friend at the moment.

C

Josephg
Posts: 158
Joined: Jan 2013

Bleeding is not unusual during and/or after radiation therapy.  I did not bleed during radiation, but I did so on more than one occassion after radiation.  Certainly, advise your Radiation Oncologist, to keep them informed, and to receive any feedback that they have pertaining to your own case.

You have chosen a course of treatment, so look only ahead, and don't waste mental and emotional energy on looking backward, or second-guessing any of your previous decisions (I know, much easier said than done).

I wish you the best of outcomes on your journey.

hewhositsoncushions
Posts: 274
Joined: Mar 2017

Joseph

I'm more stuck worrying about looking forward to the unknowns.

Stupid, I know but I think the beginning of the side effects just hits home how out of my control all this is.

C

Josephg
Posts: 158
Joined: Jan 2013

You are proactively working on what you can control, and that is all that can be expected from you.  If and/or when future situations occur, you will work at that time on what you can control.

Again, easier said than done, but that is the life of a cancer survivor (really, everybody).

Live each and every day working on what you can control, and make the best of each and every day for you, your family, and your friends.

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