My Cancer Journey So Far

[DaveK1200]

My Cancer journey so far.

This is what happened to me, please make of it what you will.

Currently 64 years old.   General health has been good up to last year.
In 2014 my PSA reading was 3.6
In November 2016 my PSA had risen to 12.  

December 2016 appointment with urologist...
After Digital rectal exam he said,  “I would love to be proved wrong, but you have prostate cancer”.

December 2016,  Ultrasound, CAT scan and MRI.

December 2016,  MRI guided biopsies revealed aggressive prostate cancer Gleeson score 8.

December 2016,  PSMA PET Scan showed cancer in prostate, lymph nodes and metastases near aorta, oesophagus and in groin.

December 2016 (just prior to Xmas), appointment with an oncologist to explain scan results. 
He advised best option Androgen Deprivation Therapy (ADT), not a cure but may give me extra time.

January 2017.  Appointment with urologist who confirmed diagnosis as incurable stage 4 metastatic prostate cancer.

January 2017. Appointment with a leading robotic surgeon who advised me that prostate surgery was no longer an option.

January 2017. Appointment with another oncologist recommended by my urologist who confirmed the diagnosis and agreed that ADT was best way to proceed, so I agreed to take it on a monthly basis rather than 3 monthly, in case of the bad side effects I had read about.

Being told you have an incurable, life threatening disease is tough, so I did lots of my own research and decided to take 3 separate alternatives in parallel with the ADT. 
I advised my urologist and oncologist who both said they probably wouldn’t help, but they wouldn’t do any harm either.
The alternatives were (1) sodium bicarbonate (level teaspoon twice a day mixed in water), (2) Hemp CBD oil (Elixinol, half dropper twice a day) and (3) [substance proven not to work].

I started the monthly ADT (Zolacos) injections together with my alternatives in February 2017.
I only had the ADT injections in February and March because the side effects such as weakness, hot flashes and inability to think clearly made my life unbearable but I continued with my alternatives.

April 2017, continued with my alternatives, each twice daily. No ADT.

May 4^th 2017.  PSA reading down to 1.4
May 4^th 2017  another PSMA PET scan. 
May 9^th 2017. Appointment with my oncologist to discuss PSMA PET scan results. 
The metastases that were in my December scan were gone and my lymph nodes and prostate appeared normal.
He was amazed and told me that there was no cancer showing up in my body in the latest PSMA PET scan. 
I asked if I was in remission and he said yes.
He wants me to have PSA blood tests every 3 months and have another PMSA PET scan if the PSA goes up too much.

June 2017, continued with my alternatives, but cut them back to just once a day. No other treatment.
July 3^rd 2017. PSA reading up to 2.0 but advised that is still very good for my age.
Sept 29^th 2017 PSA reading 2.9 

I will keep watching and waiting to see how far it goes up, but for now I feel fine.

 

DISCLAIMER: The information contained in this website or our forums is not intended to recommend the self management of health problems or wellness. It is not intended to endorse or recommend any particular type of medical treatment. Should any reader have any health care related questions, promptly call or consult your physician or healthcare provider. No information contained in this website should be used by any reader to disregard medical and/or health related advice or provide a basis to delay consultation with a physician or a qualified healthcare provider

[alanbarlee]

Wow, Dave - what a great story!

 

I can't comment on the complementary items (not having researched them).

 

You seem to have had a spectacular response to two rounds of ADT (Zoladex), in spite of the side effects (which seemed to be on the high side of normal - perhaps connected with the remarkable improvement in metastases and PSA.

 

Keep in mind the need to watch the rate of serial increase in PSA  (especially its doubling time): this is more important in tracking things than its absolute value.

 

Gleason 8 disease is fairly aggressive, and in the presence of mets (including micromets not yet visible even to  a gallium-PSMA scan, but indicated by your rising PSA), you might want to discuss with your medonc the possibility of including 6 rounds of docetaxel (Taxotere) if / when you restart ADT (consider the GNRH antagonist Degaralix, and possibly with an anti-androgen like Cosudex included). The latest evidence seems to show that an early broadside (combination)approach works better than creeping treatments up sequentially. 

 

Stay in touch.

 

Alan

 

 

 

   

[DaveK1200]

Thanks Alan

 

The 2 rounds of Zolacos that I had were only the smaller 3.6mg injections, as opposed to the usual 3 monthly 10.8 mg injections.

The total amount was only 7.2mg of Zolacos, which is less than 1 round of the usual 10.8mg injection.

 

So I have great difficulty attributing my improvements to the Zolacos, which I was told would only hold it or shrink it for a while.

 

I believe it was the alternatives that helped me, and if it becomes necessary I will probably do exactly the same thing again.

 

Best wishes,

 

Dave

 

 

[Aussieflicker]

Hi Dave - impressive - what concentration Elixinol did you take?

[DaveK1200]

Hi Aussieflicker,

 

Thank you for your question.

 

The first few months I was taking Elixinol 300, which is one of their lowest strengths.

 

Later on, after my second PSMA PET scan I couldn't get supplies of Elixinol so I switched to Endoca 500 strength.

 

I know what I did was very unscientific.

By taking 3 separate alternatives I'd never know which helped if I improved, but I didn't care because I just wanted to get better.

 

I didn't want alternatives that cost a fortune because if something costs a fortune then it's more likely to be a scam.   

The CBD oil worked out to be around $100 a month, the [substance shown not to work] around $25 a month and bicarb soda is as cheap as chips.

 

Kind regards,

 

Dave 

[Brian Lawrenson]

Dave I'm pleased that you had a successful outcome. I've been on ADT for 6 years until it stopped working (commonly reported). My oncologist  then switched me to Xanti (enzalutamide). I was told in January 2015 after a PSMA PET Scan that I had 18 months to live. This got me focused on finding a solution. In March 2017 I started looking at Lutium 177 It is offered at the Macquarie Imaging in Sydney and in Perth (Dr Lenzo) and at the Peter MacCallum Cancer Centre in Melb. After two treatments all my mets have gone and I'm declared cancer free. Anyone who has cancer outside the prostate should look at this. They are starting a new national trial soon so this might make the treatment free. Otherwise it is $9,600 per treatment, which is pretty steep. Good luck and I hope that you stay cancer free.

Regards Brian 

[alanbarlee]

Great outcome, Brian! Not all candidates turn out to be PSMA-positive, but for those who are (I think around 50%?) 177 Lutetium-PSMA therapy can work miracles.

Hopefully the new trial (which will compare Lu-PSMA with cabazitaxel (Jevtana) chemotherapy will, together with overseas trial results,  lead to public funding approval here in Oz.

Best wishes,

Alan

  

[Patrick Turner]

Dave K said

Being told you have an incurable, life threatening disease is tough, so I did lots of my own research and decided to take 3 separate alternatives in parallel with the ADT. 
I advised my urologist and oncologist who both said they probably wouldn’t help, but they wouldn’t do any harm either.
The alternatives were (1) sodium bicarbonate (level teaspoon twice a day mixed in water), (2) Hemp CBD oil (Elixinol, half dropper twice a day) and (3) [.....], 20 drops twice a day.

 

I was also told there was no cure, so only delaying tactics of ADT until it fails, followed by whatever medicines they have in closet. 

I didn't suffer weakness of mind or body with ADT, but found my average speed on bike dropped from 29kph to 24kph and I still managed to stay with ppl 10 years younger, and continue working OK. But we are al different. 

I read a lot about an Italian doctor who tried injecting NaHCO3 (dissolved baking soda ) to arteries up-stream of a cancer site. The cancer halted its growth, but when infusions were stopped, cancer kept right on growing. The authorities in Italy deregistered this doc and banned any baking soda clinics. Trying to alter blood PH with baking soda to make blood more alkaline is impossible, because blood PH is one of The Most tightly regulated property of blood, and ingesting something alkaline may make blood more acidic to counter the effect of baking soda. Our gut produces HCL acid, and it quickly neutralises NaHCO3. NaCl ie, salt, plus CO2 are results, so you burp after a drink of baking soda, but its good for indigestion where the acid is making something ache a bit.

 

late 2014, I grew 9 plants of Sativa cannabis and extracted the oil. I got 22CC. dark brown grease it was, and enough to cover a pin head got me high, but its high CBD stopped all bad psychotic effects. I used it nightly for 8 months, and Psa showed ZERO response. But many ppl online swore it helped them, and NOT ONE offered any proof it did anything, doctors reports, Psa numbers, ZIP.

I was using 3mg average of the pure undiluted oil. The oil you buy, and tinctures have SFA cannabis content, and dilution is often 1,000 : 1 so what they sell looks a lot, maybe a 100cc bottle, but there's very little CBD in it. Some growers and sellers sent me emails to object to what I found with cannabis, and said I needed a gram a day, and much less than 1gram of what I grew may have killed me, or had me just layabout stoned for a week, unable to get to a toilet. So I quit cannabis, no withdrawal symptoms, no paranoia, and it was nice to be so calmed down. I still averaged 30km on my bicycle, no problems, but if I tried writing a web-page at 10pm, it was gibberish.

 

I also ate apricot kernels, 24 a day for 24mg of amygdalin daily for many months. Psa did not show any change of course, just a slow relentless rise while the ADT was working.  

AFAIK, there is NOT one single alternative therapy which beats Pca or has any good effect at all.

 

Your Psa is rising, and I see NO REMISSION at all, and unless someone proves otherwise, you have a big battle ahead.

Psa should be 0.7 at 40, 1.0 at 60, and anything higher is a cause of big worry. I know a bloke who was so glad to have his PG removed when Psa  was 2.8. His On-the-ball GP insisted he have it removed. They found cancer, but he's OK now. 

My cousin of 73 has Psa of 0.7, and isn't worried. He has other metal problems instead, and most blokes by 70 have a number of medical bothers. 

Patrick Turner.

[DaveK1200]

On 10/4/2017 at 8:39 PM, Patrick Turner said:

Dave K said

Being told you have an incurable, life threatening disease is tough, so I did lots of my own research and decided to take 3 separate alternatives in parallel with the ADT. 
I advised my urologist and oncologist who both said they probably wouldn’t help, but they wouldn’t do any harm either.
The alternatives were (1) sodium bicarbonate (level teaspoon twice a day mixed in water), (2) Hemp CBD oil (Elixinol, half dropper twice a day) and (3) [substance shown not to work], 20 drops twice a day.

 

I was also told there was no cure, so only delaying tactics of ADT until it fails, followed by whatever medicines they have in closet. 

I didn't suffer weakness of mind or body with ADT, but found my average speed on bike dropped from 29kph to 24kph and I still managed to stay with ppl 10 years younger, and continue working OK. But we are al different. 

I read a lot about an Italian doctor who tried injecting NaHCO3 (dissolved baking soda ) to arteries up-stream of a cancer site. The cancer halted its growth, but when infusions were stopped, cancer kept right on growing. The authorities in Italy deregistered this doc and banned any baking soda clinics. Trying to alter blood PH with baking soda to make blood more alkaline is impossible, because blood PH is one of The Most tightly regulated property of blood, and ingesting something alkaline may make blood more acidic to counter the effect of baking soda. Our gut produces HCL acid, and it quickly neutralises NaHCO3. NaCl ie, salt, plus CO2 are results, so you burp after a drink of baking soda, but its good for indigestion where the acid is making something ache a bit.

 

late 2014, I grew 9 plants of Sativa cannabis and extracted the oil. I got 22CC. dark brown grease it was, and enough to cover a pin head got me high, but its high CBD stopped all bad psychotic effects. I used it nightly for 8 months, and Psa showed ZERO response. But many ppl online swore it helped them, and NOT ONE offered any proof it did anything, doctors reports, Psa numbers, ZIP.

I was using 3mg average of the pure undiluted oil. The oil you buy, and tinctures have SFA cannabis content, and dilution is often 1,000 : 1 so what they sell looks a lot, maybe a 100cc bottle, but there's very little CBD in it. Some growers and sellers sent me emails to object to what I found with cannabis, and said I needed a gram a day, and much less than 1gram of what I grew may have killed me, or had me just layabout stoned for a week, unable to get to a toilet. So I quit cannabis, no withdrawal symptoms, no paranoia, and it was nice to be so calmed down. I still averaged 30km on my bicycle, no problems, but if I tried writing a web-page at 10pm, it was gibberish.

 

I also ate apricot kernels, 24 a day for 24mg of amygdalin daily for many months. Psa did not show any change of course, just a slow relentless rise while the ADT was working.  

AFAIK, there is NOT one single alternative therapy which beats Pca or has any good effect at all.

 

Your Psa is rising, and I see NO REMISSION at all, and unless someone proves otherwise, you have a big battle ahead.

Psa should be 0.7 at 40, 1.0 at 60, and anything higher is a cause of big worry. I know a bloke who was so glad to have his PG removed when Psa  was 2.8. His On-the-ball GP insisted he have it removed. They found cancer, but he's OK now. 

My cousin of 73 has Psa of 0.7, and isn't worried. He has other metal problems instead, and most blokes by 70 have a number of medical bothers. 

Patrick Turner.

 

Hi Patrick,

 

Thank you for your comments and kind wishes.

 

I’m only one person, so I already know that whatever happens to me will never prove or disprove anything.
But I suppose that would apply to all of your experiences too.

I feel a heck of a lot better than I did in March when I was tired all the time, no libido, hot flashes, couldn’t concentrate and even had to stop riding my motorcycle for a while.  (Kawasaki ZZR1200 if anyone's interested.)

For me quality of life is the thing that counts the most.

You wrote about Bicarb Soda and CBD oil, do you have any comments about the [out] I took as well?

 

Kind regards

 

Dave

[Patrick Turner]

I said

Your Psa is rising, and I see NO REMISSION at all, and unless someone proves otherwise, you have a big battle ahead.

Psa should be 0.7 at 40, 1.0 at 60, and anything higher is a cause of big worry. I know a bloke who was so glad to have his PG removed when Psa  was 2.8. His On-the-ball GP insisted he have it removed. They found cancer, but he's OK now. 

My cousin of 73 has Psa of 0.7, and isn't worried. He has other metal problems instead, and most blokes by 70 have a number of medical bothers. 

Patrick Turner.

 

then you said

Hi Patrick,

Thank you for your comments and kind wishes.

I’m only one person, so I already know that whatever happens to me will never prove or disprove anything.

But I suppose that would apply to all of your experiences too.
I feel a heck of a lot better than I did in March when I was tired all the time, no libido, hot flashes, couldn’t concentrate and even had to stop riding my motorcycle for a while.  (Kawasaki ZZR1200 if anyone's interested.)

For me quality of life is the thing that counts the most.

You wrote about Bicarb Soda and CBD oil, do you have any comments about the [.....] I took as well?

Kind regards

Dave

 

Forgive me for my prediction that your Pca may be a future threat, but I've been in so many forums and read so many stories, I was merely pointing out what seems obvious to me. If I had taken your approach that quality of life is paramount, and not gone ahead with ADT for the rest of my life, I would be very dead by now. Within a month or two of beginning ADT, I had hot flushes and itch to have sex vanished. But Roger still worked OK for about 3 more years, and if I had any chance to share a sexual experience with a woman I would have remained able to, with enough pleasure to sustain interest. Desire for a partner remains to this day, but I've not had any closeness with women since about 2004, with an F 57, whose menopause had begun at 32, and she turned out to have huge mental problems which she was determined to deny existed, and that attempt to put a woman into my life lasted 2 months. Before that, there was very little of consequence for previous 10 years, but not having a woman has not prevented me having a good life quality. I don't NEED anyone, but like to share and be gregarious, always ready to discuss anything any time, which upsets a lot of ppl. So I didn't need a Roger at all, he was nice to share life with when he worked, but not absolutely necessary. Life taught me that all the women I met and dated for longer than 3 months, with two lasting 3 years, all seemed to want a lot of everything, but could not commit to anything. Nobody ever really valued me . Women love sharing sex for awhile, then they don't, and they progress to a hateful mess, and do nothing for my lifestyle, or quality of life when they seethe with hate after attempting to follow the rule about continued partnership without complaining about 101 things which do not bother many of the women up and down my street who are able to commit, and whose lives transcend whatever it was that make so many women so intolerant of so many men. Anyway. Roger wasn't much use, I had the letter, but nowhere to post it.

I could always say I don't have a good quality of life, but in fact I do have a good life - and I am not tormented daily by a pile of ppl I'd rather not have to deal with. My father died at 60 and left behind my mother at 55 who lived till 98. Not once did mum complain about poor quality of life, and by 80, my sisters and I counted there were more than 80 Christmas cards she'd taped to the banister on a staircase. I'd left home, but the gatherings and social life my mum had were just fine, and not once in 43 years did she complain that she missed her sex life with my dad, and she never let another fellow touch her. People don't need sex. I'm very like my mother, and I'd be really happy with a partner who didn't need sex and we could spend our days being nice to each other and tolerating each other's medical conditions. And porcine flight is more likely to be possible than me find a lady willing to accept me on terms we both agree with.

So I was able to wave goodbye to sex, and to a whole pile of other stuff ppl say they need to have a quality of life. Many would never be able to have this attitude that less is actually more, when you cease being a youth at about 55.

 

I have always tried to stay fit, and as a working builder, that kept me healthy, but when knees went phut in 1992, I quit building, and taught myself a new trade of hand crafting audio gear. Lifestyle? Quality of life? all out the window, just enjoy work, and I did, even with terribly low pay with craftwork. I put on 20Kgs in 12 years and had an arthroscopy in 2005 which had me become so confident again I sought a female partner again and I could do more. In 2006, I got back on my bicycle and have ridden 130,000 km since. The 20Kg went off in 6 months, and by 2009, I was one of the quickest ancient cyclists in ACT. My quality of life was huge, fabulous. But Pca diagnosis was a bummer, I was sorry for a few minutes, but I'd already read a lot on online about its horrible effects on men's lives, and I expected to get it, or something else, because usually something intervenes to prevent being youthful going beyond 55 for most ppl. Not all. Some are still just like they were at 30, a bit slower maybe, but not cancer or other sickness. last feb, I met a 94 yo lady who had a fall at home and it was her first time in hospital and she handled re-hab and exercizes really well. She was the rare exception and most of us have to deal with life handing us a shyte sandwich and life commands us to eat it, at maybe 40 years before 94. Quality of life? be happy to be alive at all.

Anyway, by the time I began ADT, I was ragingly fit, so most of the horrid effects that so many men write about at forums just didn't happen to me. Sure I had 3 hot flushes daily, but these were not a bother, and sure my cycling speed sagged without testosterone. I didn't need anyone to tell me I had a poor quality of life, I knew, but so damn what? There were many weeks I cycled 300km+

I spent 13 years from 19 to 32 spend on motorcycles, I had a few pomme bikes, the last bike was BMWR75 which lasted 100,000 miles without needing any repairs, and I courted  wife on it. She loved it too, but as I said above, love all ends, she became severely morose, and imploded, and vanished, to work herself out, which never seemed to actually happen.

 

The BM sure was exhilarating but it didn't keep me fit. I bought a Holden ute for work, and sold the bike in 81, and have been tempted to return to a motorcycle and I have this closit desire to own a 350cc single but I know it could so easily kill me because wanting thrills and speed at 70 could a silly thing to want because KE = M x Vsquared, and one fall at 120kph might turn me into a bag of crushed bones. But when I ride down hill at 50kph on a bicycle, I get all the adrenaline I need, and a fall is less likely to smash me to bits, so the  chance of a bad end on two wheels does not haunt me. I have no idea how long I can continue to cycle, and who knows, I might keel over with heart failure, but docs tell me its highly unlikely, and that I ought to keep cycling. No testosterone means heart function can become dodgy, and sure, I had a fibrillation 2 years ago when I quit cycling for 3 months when my bad knees went a bit sore. Docs fixed that, and so far so good, but my mum had irregular heart rate, and she made it to 98, something I sure won't achieve. All these things that seem to upset other folks don't make me upset.

So to conclude, the fitter you are, the better you'll handle prostate cancer and its treatment side effects. Fitness tends to bring mental clarity of mind. I hate all gyms. I need freedom. The bicycle makes me think fast and accurate to remain alive despite the attempts by motorists to kill me.  

But I must stop typing, and get out on bike to get a 2 hour ride in before vego sandwich lunch.  

BTW, I don't know what [.....] is, I'll try Google later.

Keep well, but I know just how darn difficult it is,

Patrick Turner. 

[Barree]

Hi Devan,

I have removed your Posting to Dave - there may be legal implications for nominating the the name of a supplier of CBD on this forum

 

[Guest Devan G]

Thanks Barree, I understand.

 

Regards

Devan

[DaveK1200]

Hi Patrick,

 

Thank you for sharing your experiences, you’ve had a tough time and I wish you well.

 

Hope you find [.....] interesting, it's what I pinned most of my hopes on.

 

With regards to my oncologist answering “yes” to my question about if I was in remission...
That was in May 2017 and he based it on the results of my May 2017 Ga68 PSMA PETCT scan which showed everything , including prostate, as normal.

We asked him where the cancer that had shown up in my December 2016 Ga68 PSMA PETCT scan had gone, and he replied that it appeared to have just “melted away”.

He said there might still be some cancer cells that were too small for the scan to pick up, which is why I wanted to keep going with my alternatives at a reduced rate.

He said it was great news and that I should get on with living my life.

He wants me to have PSA checks every 3 months and if he feels it necessary I’ll have another Ga68 PSMA PETCT scan.
I’ll be seeing him again in November so we’ll see what happens then.

 

Good luck for the future and enjoy that bike.

 

Kind regards

 

Dave

[timbaker]

Congratulations Dave, that is great news and food for thought. I don't share the pessimism of some others here or the view that no alternative treatments work. I guess I've tried to take a middle road, conventional treatment - chemo and ADT - along with a pretty vigorous diet, exercise, herb, supplement, lifestyle program with generally encouraging results. PSA of 120 at diagnosis dropped to 0.3 after chemo and ADT, rose again to 3 a year after chemo finished, dropped to 1.2 after adding Cosadex to Zoladex, then oncologist agreed to  a (very welcome) break from Zoladex. Have had 10 months off Zoladex, initially PSA continued dropping to 0.8 and stayed there for a bit but has risen again as my testosterone has, back up to 3, so next blood test will influence whether I go back on Zoladex (shudder) or continue with my lifestyle program. Have tried cannabis oil (home made) but didn't seem to help PSA. Daily meditation is probably the foundation of my approach. I'd take bi-carb daily for the rest of my life rather than Zoladex. well done, I love hearing inspiring stories like yours. 

[Patrick Turner]

Dave said

He wants me to have PSA checks every 3 months and if he feels it necessary I’ll have another Ga68 PSMA PETCT scan.
I’ll be seeing him again in November so we’ll see what happens then.

Good luck for the future and enjoy that bike.

Your story so far does indicate ADT worked very well for while, you had only 2 injects of Zolacos, which I guess is like Eligard or Lucrin.

Google di not yield one bit of evidence that any chemicals in cannabis, or [.....] or any other herbal concoction or alternative thing stops cancer. You might be lucky though. It seems you are hyper sensitive to ADT which I found to be very tolerable, once I came to terms with the fact I wasn't ever to have sex again. Thousands of blokes go down the same ADT path as I have with no major worries.

I was told about PsMa scans in early 2016, but psa should be over 2.5 for reliable indication of Pca presence in PG and elsewhere.

I had first scan in May 2016, and sure, PG was a big blue blob, while viewing the scan with doc I asked "what are these 2 pale blue spots up here away from PG?" He said they were "upper lymph nodes" and were barely detected.

I was given additional IMRT on PG and to these lymph nodes in July 2017, when Psa had reached about 5.6 after ADT failure.

I was also given Cosadex, a hormone blocker drug. Psa went to 0.72 in August, and bottomed at 0.4 before Xmas, then began rising[

and by July, Psa was back where it was a month before, but higher for the next PsMa scan which then showed upper lymph nodes were not affected by 45Grey but I had numerous other mets in lymph nodes and a few in bones. The PG primary tumor had become slightly smaller after the total of 101Grey so far. I bet there may be hundreds of tiny mets in my body right now. With the higher Psa at this year's PsMa scan, and with their increase in size, the biggest all showed up, and it is most likely that many of these mets have been there for many years. The PsMa scan has been like cat among pigeons, alarming so many blokes when they saw all their mets when they had thought could never have been there.

 

Your idea that cancer has somehow melted away due to alternatives holds no truth for me until proven otherwise, and sure, your future may prove alternatives work. But you still have your PG intact, and you would have some healthy PG tissue which makes Psa but with Psa at 1.4 at your last PsMa scan, not even the healthy tissue showed up, and the amount of Psa produced your mets has gone so low they did not show up in scan. The PsMa scan relies on Psa producing cells, and I cannot help conclude your mets plus the Pca in your PG went nearly to sleep, became less detectable, but they are all still there, and next time you have a PsMa scan with a high Psa, they may all show up again. The Gallium68 becomes attached to cells which make Psa because of ligand molecule. And if your Psa goes low, the amount of Psa at the mets may be so low that not enough Ga68 gathers at each met so there is no scan image.

 

I am well aware of a number of blokes around the world who have had their Psa go from 5.0 at diagnosis to several thousand, then back to less than 0.01, then back up again and down again and each time the new drug seemed to work, but no, the Pca stayed alive, mutated, and continued to thrive until the next drug was tried. Each time the bloke thinks he's beaten it this time, but no, he hasn't, and after a 10-15 year battle, and using every expensive chemical on the shelf, Pca finally wins. I read hundreds of stories at Pca forums mainly based in US way back in 2009,10,11. Some forums have gone dead because those who managed the forums died, leaving it to subside to viruses and malware. The Internet gets cancer too.

Your Psa has risen from 1.4 in May 2017 to 2.9 at September, so a doubling in 4 months, and although these Psa levels are within a "normal range", the CHANGE of Psa levels seems not normal. The rate of Psa increase can change, and can quicken to become even more alarming. When you quit ADT, its affects linger on much longer than the 1 month time given for guaranteed hormone control. So each 1 month to the next, there is an overlap time of effectiveness. I had 3 monthly ADT inject at first, and when I first had a pause of ADT, it took a couple of months for the previous inject to fully stop its action then more time before my balls began generating testosterone again. Once they got going again to make a high amount of testosterone, Psa went from nadir of 0.08 to 8.0 in six months, and doubling time was quite alarming, so don't be surprized if your Psa doubles in the next 2 months. 

 

If you are crediting lower Psa to alt-therapy, well fine, but instead of reducing alts as you say you are doing, maybe you need to double them. But nobody knows just what might be in any bottle of herbs anyone buys online, of all places, where rogues are plentiful and scammers scam constantly. Where is the quality control? Who checks just what is in a bottle of herbs? Can you trust a bunch of money hungry snake oil sales men? 

 

I have a highly analytical mind which allows the worst case possibility to be a possibility, as well as all other possibilities. This made me accept there are more ways than one to solve a problem and that medical issues were often so complex that not one single idea about anything could be fully true; there may be a number of things true, and some false, and so some things I suspected about my Pca status were bullshit, and unfortunately the PsMa scans showed things were usually worse than I suspected. Usually, my fears, anxiety and doubts have greatly helped myself towards the truth and survival, ie, it has been most positive to explore doubt, and assume I am incorrect until I prove otherwise. How did I manage 61km on a bike this am? because I'd be forecasting where the cars, trucks and busses might be in the next second, and assume I was invisible to them. Its Defensive Consciousness, and it will not have the slightest effect on my Pca progress which is determined by my DNA which behaves completely independently to my emotions, wishes, deep thoughts, meditations or whatever, and only stuff like abiraterone is having any slowing effect on my Pca.

 

I did enjoy the 61km on bike, but I stopped 5 minutes to watch 2 crows trying to kill a white cockatoo on the floor of a concrete drain about 10M wide. For some reason, it could not fly away. 6 other cockatoos watched from a nearby tree. The 2 crows managed to pull out a few white feathers, and avoiding the deadly bone crusher beak of the parrot. The 6 onlookers got bored, and flew off. One crow left, leaving his mate to continue the taunt, and then I lost interest so I went off. It reminded me again that nature is cruel, but the attack and defence skills of the birds were a wonder, and of course we have very similar attack-defend skills within us which may help us, or not help us. The parrot was slow, as the crows danced around it, and in nature, you rarely ever see a dead bird because its eaten right after it dies. Nature depends on things fighting each other, and there are winners and losers. I am just a man, and I know very little, and I cannot stop all shit from happening and I am lucky that my culture allows me to avoid the fights to a death with pain, and I have been told the morphine at the end is a blessing. 

Patrick Turner.

 

 

 

[alanbarlee]

Hi Patrick,

I like your positivity!

It might be an idea to check out the 177Lutetium-PSMA trial that is starting up around now. This has had spectacular success in the 50%+ patients who test out as PSMA positive.

Cheers,

Alan  

 

[DaveK1200]

Hello again Patrick,

 

We've got to stop meeting like this.
Perhaps we should just agree to disagree.

 

I was advised that a Ga68 PSMA PET CT scan was the "Gold Standard" in scans and could detect cancer even with extremely low PSA levels.

I was also advised that PSA levels are indicators, and that it's possible for someone with a low PSA to still have cancer, and that it's possible for someone with a high PSA to have no cancer.

 

Perhaps my low PSA level in early May might be due the withdrawal of testosterone caused by my 2 months of ADT?

Perhaps some of the rise in my PSA from May to late September might be attributed to my testosterone returning?

Who knows?   I'll ask my oncologist at my next appointment.

 

You are absolutely correct about [.....].

You won't find any real evidence that it works on Google.

There will never be any scientific proof without full clinical trials.
Who would fund such a trial?

Would any doctors recommend such a trial to their patients?

However, lack of scientific evidence is a double-edged sword, there's no proof that it doesn't work either.

Nurse Rene Caisse never charged her patients for their [.....] treatment.

In 1978 busloads of people travelled across the country to attend her 90th birthday and thank her for [.....].

She died December 1978 and in 2000 a statue of her was erected near her former clinic in Bracebridge, Ontario.

She doesn't sound like a scammer, rogue or snake oil salesman to me.

 

Perhaps you are right and I am just hyper sensitive to ADT, and it alone caused the improvements shown in my scans.

It was my oncologist who used the term "melted away", in fact he actually said "appears to have melted away like chocolate".

 

I know it might come back, I worry about that every single day, so you don't need to remind me.

But if it does, I'll do the same things again.

They might not help anyone else, but they seemed to have helped me, without extended ADT, surgery, chemo or radiotherapy.

I'll probably include the 2 x 3.6mg injections of Zolacos too, just to make sure that I do exactly the same as before.

 

Wishing you all the best for the future.

 

Kind regards

 

Dave.

[Patrick Turner]

Dave said

We've got to stop meeting like this.
Perhaps we should just agree to disagree.

I was advised that a Ga68 PSMA PET CT scan was the "Gold Standard" in scans and could detect cancer even with extremely low PSA levels.

I know very well that some of my observations of what I read can be a challenge for others, so I'll minimize further comments on your story. 

I do agree with much you say, and to understand [.....] potential for myself, I would have to try it, even though there is not any science which describes how it works. But I do fear that buying a supply of [.....]is likely to involve being ripped off, ie, what is in the bottle isn't [.....], or it is is, the amount is so small it may do no good, although there is the placebo effect, which never works for me because I have become so skeptical.

When my oncologist told me about the Ga68 scan, it was obvious it was the "gold standard". If it had not been developed, other forms of scans like CT etc may not have shown anything except perhaps my PG, so the Ga68 gives us a view at least 2 years earlier than with CT etc. The Ga68 is disturbing many men and their doctors, and scans may be made more sensitive, and with likely result that fellows with a Gleason 6 low risk and Psa only 4.0 may be found riddled with Pca in tiny amounts. 

I was also told Psa had to be above a level of 2.0, or else they could not see much, but much depends on where Psa is being made, and I could have assumed most was being made by primary site in PG, so in 2016 they only spotted 2 small lymph node mets with estimated dia 2mm. The doc said these would not kill me, which was a bullshit statement because from little things, big things grow. He said my main worry in 2016 was the Pca in PG and the fear of local spread, but a year later there's no local spread but many mets have grown big enough to now be seen by Ga68 scan. The IMRT at Epworth seems to have worked, so spending $15,000 wasn't wasted. But it did not work for a friend who had RP at Epworth, and then rise of Psa, then IMRT, and followed by more rise of Psa. He's now on permanent ADT,

he's under 60, and its seems he is the luckiest of men because he has a supportive family. What happens for one man is different for another.

My abiraterone seems to be working, but I it will not work forever, and then its chemo. I suspect the predisolone is beginning to cause hypotension bothers and I do not know yet if I get serious side effects from abiraterone and prednisolone.

 

I had a guy try to convince me that dandelion tea worked against cancer. It was The Most Terrible tasting tea I ever had, just like drinking piss. 

He also said I MUST use red light shone at PG, using multiple LED all connected closely together on a wooden dowel to make what looked like a Glowing Red Cock 🙂   There was this picture online of this gadget. And when this is inserted up rectum, enough red light shines through thin tissues then into PG to stop the cancer in its tracks.  Like so many things online, I thought someone might buy it, but I would not, as I have to draw a line somewhere.

Your next scan isn't far away, and I hope your cancer is indeed in remission. Only time will tell. 

 

I had a couple of emails with Dr Micheal Hocking earlier this year. He did the Lu177 trials at Peter Mac in 2016. I asked how the patient in his video was now doing, months later, and he was diplomatically coy about the man's situation. He said the trouble is that there are things which can get the Psa to go very low, but not cure the underlying disease. Like most things medical, outcomes are very different for many men getting the same treatment. I'd dearly love to be more optimistic than I am.

Now can we un-meet? I'll always agree to disagree. Cheer up, there's a weekend comin.

Patrick Turner. 

[DaveK1200]

Dear Patrick,

 

Yes, it's weekend.

 

There are push bikes and motorbikes for us both to ride !!!!!!!

 

Dave

P.S.  I see that you wrote about the dandelion tea ...

"It was The Most Terrible tasting tea I ever had, just like drinking piss."   

How do you know what piss tastes like?     LOL

 

Cheers,

   Dave 

[Patrick Turner]

Alan mentioned

"I like your positivity!" 

I sometimes wonder if I am at all positive after so many ppl told me I was negative, starting at about age 19, and realising how imperfect the world was, including myself. I never ever begged a woman to marry me, even after marrying one, nor was I ever fully at ease with the prospect of breeding, or staying under the thumb of a boss, and I never yearned for a Lamborgini, or waterfront house. It didn't stop me working hard and by 37, I'd paid off my house fully without a partner; and just because everyone was so picky about partnering in 1973, and so unreliable about it, I wasn't going to let myself fall to bits when something went wrong. Many hated their jobs, but I didn't, especially after I become self employed by 33. Life is still good, and could easily have been so much worse, so I am so lucky. But I think the future looks grim for "Homo Rectus" ; he is that species that gallivants about the Planet, wrecking every part he finds, putting himself, ( and herself ) before all other things, oh, this woeful instinct we doth possess! Our Ardani dreams are but a nightmare. 

Our Dear Planet is beginning to kick back and I think it will soon boil us slowly, and we will do too little, too late, because that's what we are real good at doing. Oh how negative!  I don't mind not having kids, and you all should be so glad because when your kids turn up at a house auction, they don't have to bid against my kids, nor compete with mine for ever dwindling more expensive world resources. I've done my bit. The i-gen kids are now very wary about doing anything. Negative, and not admitting it, lest someone yell at them "Try to be positive!!!!" Nope, they'd like to evade it, and who would blame them? So maybe negativity reduces the world birthrate and reduces the disease of consumeritis, but it isn't universal yet, with more thinking they'll put on more agony and more style and live kingly well by 30.  

The weekend is here,

Patrick Turner.

[timbaker]

Hi Dave,

i was curious about how you arrived at this combination of treatments. I've recently enjoyed nearly 10 months off Zoladex, because I really struggled with the side effects, and my PSA stayed reasonably low for most of this time (I believe through a combination of exercise, diet, meditation, supplements) but is back on the rise and I face the prospect of going back on Zoladex. I imagine the bicarb soda is to alkalize and I've read up on [.....] and am familiar with cannabis oil but wondered if there was any particular theory about their use in combination. I like to think I am trying to walk a sensible middle path using both conventional and natural therapies but the Zoladex really impacts quality of life and at just 52 the prospect of being on it for the reset of my life is pretty daunting. Would welcome your thoughts. 

[DaveK1200]

Hi Tim.

I wasn't scientific about it.

 

Those 3 things all looked promising and relatively inexpensive so I decided to try a 3 pronged attack.

 

If something was going to be really expensive then I felt there's more possibility of it being a scam.

 

I knew that if I improved then I wouldn't know what had worked but I didn't care about that, I just wanted to get better.

 

I know exactly what you mean about zoladex.

 

Best wishes 

Dave 

[Patrick Turner]

Tim said 

"I've recently enjoyed nearly 10 months off Zoladex......"

In every man I have ever known with Pca and needing ADT, if they quit ADT for awhile, Psa always rises, and when ADT is re-commenced the Psa does not go down to the same minimum which was achieved during previous ADT time. I've had ADT now since 2010, and it continues with monthly injects and now with added abiraterone, which is a more powerful testosterone suppressant because it shuts down testo from adrenal gland. maybe the abi plus Lucrin will stop my Pca growing fast for a year or two, but of course its just as likely it will stop working in 6 months.

Some clinicians recommended having ADT with planned gaps, but few now make the same recommendation. 

I had two pauses in ADT, one in 2012, for 6 months, and average bike speed went back up to about 28kph, and Roger came alive, and I could enjoy a jolly good Jerque Orffe, and as Groucho Marx once said, "ah, well ain't nothing wrong with playin with yaself, you meet the best class of ppl", and I guess he meant, like I do, that if he wanted sex, he'd have to buy it, and I don't know about Groucho, but paying a girl was never ever to make me feel like a man. Besides, if I do live with "she who occasionally Duzzitt" then I need to know I'm the only one riding her, rather like the fact I'm the only one riding my bicycle. The bonus would be that Ms Duzzitt also quite likes me, but is that always real? no amount of reading books will answer this question.

 

After I came off ADT, the effects of previous inject takes some time before it wears off, then balls take time to switch back on, and when mine did, whoosh, up went testo to 20 in normal range of 8 to 38 units. And the Psa followed it, rising from 0.08 to 8.0 in 6 months, and I had myself transferred from urologist who'd failed me to an oncologist "to see me out" I re-stated ADT, and Psa nosed dived, but went down to only 0.22, not 0.08 like before, so during the rise of Psa, my cancer grew bigger, and made more Psa even with ADT.

In 2015, I has another pause for 4 months and Ps shot up to 5.6, so I went back on ADT and Psa did not return to same lower level,.

The testo barely increased during that second pause, and by balls are probably damaged so if I stopped Lucrin now they may never turn back on. I don't know anyone who has not had a similar experience with long term chemical castration. Before ADT drugs, normal thing for all men with pissing troubles which may / may not have been because of Pca, was to have balls cut out. Its not a big job. When I was a kid I helped my dad in his vet surgery desex tomcats and dogs, and it was done in 10 minutes. Men don't like having balls cut out, but thousands did, and life went on for longer than otherwise. They sucked it up like real men.

 

The trouble is that blokes with cut balls would be tempted to shoot up with testo, like body builders. ( before testosterone in a bottle was available, blokes might sit down to plate full of bulls testicles, lightly fried, with garlic, olive oil and herbs. Wealthier and more ruthless blokes would dine on their ememies' balls. )  :-) Methinks the body builders who live to be old enough to get Pca have encouraged Pca to begin, and afaic, the whole business of body building is yet another form of absurd male behaviour that endangers the vainest of men.

 

But then there is BAT. If you have been castrated chemically for a few years, and Psa is inevitably creeping up slowly like it always does, then Pca cells grow more receptors to catch more of the testosterone molecules passing by in blood stream, maybe 100 times more receptors, so cancer grows with the unavoidable small supply from adrenal gland. BAT causes flood of testo in blood after a 400mg testo inject and this overloads Pca cells with large number of receptors, so many just die from testo overload. But many survive. Psa goes high, then usually falls lower in 4 weeks, just before you have another 4mg inject. There is an official trial of BAT going on as I type at John Hopkins Hospital and run by Dr Sam Denmeade, and funded by US Army. Lots of old soldiers are getting Pca. The claimed benefit of BAT is that it lowers Psa, lowers tumor mass, and re-sensitises existing survivor cells to keep sleeping while on continuing normal ADT injects.

So maybe a man gets 8 years of Pca suppression instead of only 4 years. ADT DOES NOT CURE. 

 

I really do hope Dave gets a result from his alternatives, and perhaps we may read about it here if he does.

 

My present cycling habit continues with regular 230km despite ADT. But the Zytiga ( abiraterone ) is causing side effects now with heart rate becoming too slow, down to 30 some evenings, or irregular, and these two side effects are listed in book provided by makers of Zytiga, and there are about 10 side effects with the worst one being "heart attack". Well If I die while I out on me bike, I do hope they have good hose to hose me down a drain, or put the mess onto a rubbish truck, I just don't care a hoot after I'm dead. But while on the bike there's little irregularity, and I am getting better bike speed now than 4 years ago. I have the records to prove it; my small digital cyclometer gadget on handle bars records every km, max speed, av speed and time. Some 3 years ago while riding in Brindabellas, a range of mountains west of Canberra, there was a large bunch of riders doing a sponsored ride for research into heart problems which kill the most ppl. Most of the cyclists were men and a few women of all ages to 70, all said they had a bad heart, but nobody died that day, and they all believed exercise was good. The worst hill as Fit'z Hill, it rises at 10% average, but it is 3km long, and everyone riding up that feels like they are dying. So what, just DO IT, OK.

I do not relish riding in Brindies any more like I used to, because enough good health can be gained from my rides without such gut-busting hills. But I don't mind the hills.

 

I have had a lot of blood tests taken today to see what effects Zytiga is having. Its suspected that low potassium level could be the problem, so I immediately began having a bowl of cooked spinach with high potassium with my other vego intake, and now I am spacing out the time when I take Zytiga pills and when I take the "necessary" prednisolone tablets, 2 x 5mg daily, so compensate effect on normal cortisol levels from abi. I am beginning to suspect that taking pred with abi is not good, and abi should be between morning and evening times for pred. I don't like these side effects, but they are unlikely to kill me.

If I find a routine which works to stop heart rate side effects I will let you all know, because all men on Zoladex, Lucrin, Eligard et all may need to add Zytiga when Psa rises with ADT. The Z, L and E cost Unkle Gov about $5,000 a year, but Zytiga costs unkle $43,200.

One hopes something better is developed, but after abi, its the chemo with docataxel, and that does not work forever, and then its Lu177, and the latest info I read showed it increased average lifetime of those who used it by 12.7 months. LU177 is not recommended for guys who want it when diagnosed because they would then live on with horrible side effects of Lu177.

While reading a copy of New Yorker in my GP's rooms yesterday, Sloan Kettering Hospital is spending big on trying to develop effective immune therapy by altering T cells so our immune system recognises cancer. I have a neighbour who said last week he had a perfect immune system so he would not get cancer. He's 53, and no doubt he scored this stupid idea from the Internet. I agreed to disagree. My immune system is doing little to attack my Pca because it doesn't recognise my own cancer as "The Enemy". It is a HUGE imperfection found in maybe most ppl's immune system. Ppl don't like to think they are imperfect, but prefer arrogance and narcism. But at the same time they endorse the wackiest of alternative medical practices, so they are inconstant, and self contradict. Einstein joked once when he said "There are two types of Infinity, one is ordinary Infinity, the other is the infinite stupidity of so many people" What a horrid thing to say to ordinary ppl!

Anyway, dear old Einy spend a life working out stuff, propelled by a healthy diet of Doubt, and strangely enough, what he said was true was able to be proved to be true in many observations since his first brightness in 2005. Phones and satellites, and spacecraft flying to Pluto all depend on what Einy postulated. But so very much remains an infinite Miss Terry, including cures for many cancers it seems.

I only have one small finite brain, and a description of Infinity cannot fit into it, so I will die very dumb, but happy, because knowing all things isn't necessary for happiness.

Try to keep well, and sane, and I know both are difficult....

Patrick Turner.

 

[DaveK1200]

Hi everyone,

 

Thought I’d give an update on how I’m going.

 

In December 2017 my oncologist wrote to me about my November 2017 PSA result which was 4.

He advised that because of my past history and positive response to the 2 month course of ADT I had in early 2017 that I should consider doing another 2 months ADT when my PSA gets up to around 10, and he expected that to be in early 2018.

 

When I was first diagnosed my PSA was 12 and I’ve had no surgery, no radiation and no chemo.

The only ADT that I had was 2 x 3.6mg (1 month) injections of Zoladex in February and March 2017, so I’ve been off ADT for about a year now.

 

A few weeks ago (early March 2018)  I had another PSA test and a visit to my oncologist.
He was pleased that my PSA was still relatively low at 5, as he was expecting it to be higher, so he is happy to “watch and wait” for now.

 

So whatever I’ve been doing seems to working ok for me so far.
My PSA is still under what it was 16 months ago, even though I have had no treatment for a year.

I’m feeling fine and everything works ok.
Fingers crossed that it stays that way.

 

Cheers,

 

Dave.

 

 

[Patrick Turner]

3 hours ago, DaveK1200 said:

he is happy to “watch and wait”

Hi Dave,

While your doctor is "happy", I sure would not be happy myself, and I am riddled with Pca, but Psa is only 3, and abiraterone is wearing off, and maybe I'll  give enzalutamide a go, and then its hello chemo. I can't quite understand why you could not tolerate ADT for only two months. My first lot of ADT was for 2 years, and I had hot flushes which faded down because I kept cycling 220km a week, every week.

I had no partner to disappoint, and didn't mind if could not jerk off. My sanity has never depended on having sex of some form or other at any time.

But after 2 years of ADT, 2010 to 2012, I paused, and Psa went from first nadir of 0.08 to 8.8 within 6 months, and my urologist didn't like facing the fact that his recommended treatment had failed, as did his attempt at open RP. But the whole Medical System that took yearly Psa tests for previous 10 years failed to see I had a bad case of Pca when my Psa had just gone over 5.0 in 2009.

 

During the 6 month pause from ADT, I regained my former self some 6 months after last Eligard injection. Its effects took time to wear off, and Psa then started going up, and up, relentlessly. My testosterone came back to 20 units out of normal range of 8 to 38 units. My average cycling speed went back up 4kph and all sexuality fully returned.

 

All through that "re-birth experience" I never ever thought I had beaten the disease, and I felt I'd only have to fight the darn thing to the end of me. 

With Psa over 8 with high doubling rate there was no alternative but go back to ADT in mid 2013. In mid 2015, I had another pause , but Psa went from 0.4 to 5.0, and I realised I'd need ADT for rest of my life. I'm presently cycling faster than nearly all men my age despite the chemical castration and sexual mutilation that is part and parcel of serious Pca treatments. It has not hurt me, and my cycle speed is about what cycle clubmen of 71 can expect, even if they have a full bottle of testo.

I have no dependence on any partner. For the last 20 years, finding suitable partner was impossible because so many women become totally negative about men, and their menopause heightens their disdain, such is the power of hormone changes in women.

Life without a partner is lonely, but so darn what, with a partner, life could be worse. Oh but I lie, because I really do have a partner, my bicycle, and the fitness it gives me is more than any woman could give, and I can go for a ride any old time I like, without argument or expense.  I get to mow the lawn, clip the hedge and do housework to my schedule, not hers.

 

From what you say, I can only think that if you continued with ADT now for say a year, you'd reduce Psa to far lower levels than 5, which to me would be very much of a worry bearing in mind that my last scan in mid 2017 showed 20 mets, lymph node and bones, and there are probably THOUSANDS of mets, many would be too small to show up in PsMa scan. And I were you, I'd have another PsMa asap but then you still cannot know just how many mets you have. I too feel real well, and I cycled 70km this am, and prefer life without sex than an early death. 

We are all different, Charles Mack is still around 25 years after diagnosis but another friend under 60 has moved from diagnosis to RP to full EBRT to ADT which failed, then to chemo, all within 2.5 years. I know you favour alternative treatments, but all the ones I tried failed and even if they did work at all, they won't work for all men. ADT sometimes does not work, nor does RT, and chemo sometimes does not work, and because so many things just don't cure Pca, 30% of those diagnosed die because of its progress, and the % could be higher because cause of death of death certificates is put down as lung cancer, or heart failure but was caused by Pca affecting vital organ functions. 

I'm waiting for Pca to push me off the bicycle. Watchful waiting indeed.  

One big thing about getting any life threatening cancer is that a man can feel quite unwilling to plan for a future or get his affairs in order. I'd reckon many men just think stuff it all, die without another care about anything. The state of mind goes on for years.

But Oscar Wilde say "Life is too short to be serious all the time" The great Australian philosopher, Ozzy Battlur, said "The older I get, the better I woz". 

Patrick Turner.