6 years on: 2013 dyn advanced... - Advanced Prostate...

Advanced Prostate Cancer

22,371 members28,135 posts

6 years on

Coop49 profile image
39 Replies

2013 dyn advanced inoperable metastatic terminal prostate cancer.Multiple Mets on skeleton. Zoladex injection monthly. Castrate resistant 2016. Psa was 328urg/l at start. Had down to 5 urg/l and then it rose to 56 urg/l put on bicalutimide for 12 months with the castrate resistant zoladex.

Late 2017 right kidney decided to give me grief

Urologist found I had been retaining 500 ml of urine. Wouldn’t listen to me. I’d talk about wanting a TURP procedure. But no from the young urologist

2018 April hospitalised with spinal compression upper spine and lumber. Had palliative radiation treatment.

Talked into having Zytiga June. I’d been putting off taking Zytiga for 3 years because I feel that it is the end off the journey drug.

Anyway for all those years I had severe osteoarthritis in my legs an hips from the hormone treatment and bone pain.

2017 I started researching medicinal Cannabinol oil. Early January 2018 I made my own Cannabiniol oil and put the oil in capsules

Within a month I had no arthritic pain and I was able to walk freely again. I could get up the floor unaided. No bone pain and helped with my kidney problem. Could urinate better but still retained 350 ml.

I had no side affects from the radiation treatment.

I have a Supa catheter inserted in my stomach in August 2018.

My PSA is now down to .04.

My oncologist and urologist are amazed by my well being. Signed me off as self medication.

I was given 24 months when diagnosed in 2013

In December 2017 I was given 12 months.

I know that the Cannabinol oil won’t cure me of cance but hey it’s definetely given me great quality of life.

I should have been on it earlier.

I had an MRI Scan 2 weeks ago and it was compared to a scan in February last year and there has only been slight increase in size of ametastatic cluster that are less then 1 mm

That’s my story and I’m sticking to it.

Looking forward to making some friends going thru the same journey. I live in NZ. TA

Written by
Coop49 profile image
Coop49
To view profiles and participate in discussions please or .
Read more about...
39 Replies
Coop49 profile image
Coop49

Sorry this was supposed to be on my profile. Ta

Longterm101 profile image
Longterm101

How old are you ?

Coop49 profile image
Coop49

70 this coming September

I’m with you in full Coop49. I too make and use the oil everyday since dx 3-15. I’m naive also for 31/2 out of the last four years. Good luck to you..😎

Coop49 profile image
Coop49 in reply to

Right on Lulu. Would have been a lifechanger for me had I started making and self medicating with oil 5 years ago. A lot of unnecessary pain. Also the anxiety and sometimes depression that come with the cancer an treatment

in reply toCoop49

It helps much.

Coop49 profile image
Coop49 in reply to

Lulu. I put the oil in capsules and take every 4 hours waking time

I had been taking the caps every 3 hours 24/7 when I started self medicating and later when I had spinal compaction an radiation.

in reply toCoop49

Use as needed. I do a grain of rice dose twice daily.

Chask profile image
Chask

Hi Coop49, am I right in thinking that when you say you live in NZ, you mean New Zealand?

I am in Oz, and am interested in your use of canabid oil. Is that legally available in NZ? Regrettably that is not yet the case in Oz, though we are working on it. Apart from my own interest, my wife suffers from arthritis and it could be very beneficial to her.

I think I have now reached the state where Zytiga is no longer working for me and while my PSA is still low (1.2) I fear my doubling time will soon take it to levels where I have problems.

Incidentally I too have a Supra Pubic catheter, had it for the last 4 years.

Chas

Coop49 profile image
Coop49 in reply toChask

Hi Chas I do live in NZ. Originally a Manly boy. Been NZ 50 great years.

It is not legal yet but has gone thru the second reading in parliament towards the legalisation of Medicinal Cannabinol for those that are terminal or those on palliative care. It also takes in all those that suffer from brain an nervous disorders.

I turned around the osteoarthritis from being very painful to walk. Not being able to raise my arms above shoulder height and the pain from muscle loss all from a side affect from hormonal treatment

Do you live in the Coolangatta/tweed Heads area.

There is a Symposium over 3 days on Medicinal Cannabinol

unitedincompassion.com.au/2...

Coop49 profile image
Coop49 in reply toCoop49

Chas. What is the next move by your oncologist.

We are together on this one mate.

I will be flying into Coolangatta. From the 22nd to 30th March attending the 3 days of the symposium.

Chask profile image
Chask in reply toCoop49

Coop, I am in Canberra so fair distance from Tweed Heads. Be interested to hear the outcome of that conference. At this stage it is likely to be of more value to my wife than myself, but certainly not available yet. No doubt it will eventually be useful for me.

I see my Onco on Friday and expect my next step will be Chemo, but not sure if that will be now or wait until PSA rises a bit more. I actually feel fantastic, even though I have been on Zoladex for 2 years and Zytiga for 6 months. Walk 3.5 kms every day, lift a few light weights and will play 18 holes golf tomorrow.

Enjoy the Gold Coast.

Chas

Coop49 profile image
Coop49 in reply toChask

I declined to have Zytiga 3 years ago when it was first subsidised in NZ by Pharmac. I’m glad I did as I don’t think that I would be here today.

I started Zytiga 7 months ago from pressure from my wife an daughter.

I have declined chemo.

Out there doing mate. Keep up the exercise.

Ken

Chask profile image
Chask in reply toCoop49

Coop, have sent you a private message...

Mathes72 profile image
Mathes72 in reply toChask

Where is oz?

j-o-h-n profile image
j-o-h-n in reply toMathes72

Where Dorothy went to meet the Wonderful Wizard.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 03/05/2019 10:01 AM EST

Chask profile image
Chask in reply toMathes72

Sorry, Oz is the local abbreviation for Australia. We abbreviate lots of things, hopefully not my life....😉

Mathes72 profile image
Mathes72 in reply toChask

Does that go back to Peter Allen days? He had a show on broadway,my wife dragged me to it

Chask profile image
Chask in reply toMathes72

That would have been “The boy from Oz”. Great show....if you like Peter Allen. To be correct, it is a show based on the life of Peter Allen. He died in 1992. “The Boy from Oz” has been on Broadway for over 20 years.

Coop49 profile image
Coop49 in reply toMathes72

Hahaha punishment? Lol

monte1111 profile image
monte1111 in reply toChask

Very funny. No abbreviated lives allowed on this forum. And, courtesy of google, Oz is abbreviation for Aussie, which is abbreviation for Australian. I would have guessed World War II, but apparently originated in World War I. So Australia became Oz. That is way cool. Enjoy.

Coop49 profile image
Coop49 in reply toMathes72

Somewhere near NZ. Lmao

Mathes72 profile image
Mathes72 in reply toCoop49

I guess if I put I live in nc some may not know

Chask profile image
Chask in reply toCoop49

The West Island of NZ....

Coop49 profile image
Coop49 in reply toChask

Lmao

Gudgelm profile image
Gudgelm

What's the dose and how many times a day? Do you mix it in a drink? Under the tongue?

Coop49 profile image
Coop49 in reply toGudgelm

Hi Gudge I make the oil and then put it in capsules. I cap is just under 1 ml. I now take 1x4hourly during the day. When I started I was having every 3 hours 24/7 for the first month. Later again when I had the Metastatic spinal compression and radiation injested

Coop49 profile image
Coop49 in reply toGudgelm

I injest capsules. I have 1x4hours

When having rad treatment I have every 3 hours.

When I started I was taking 1 every 3 hours day an nite. It took a month for me to loose all pain associated with the osteoarthritis from 5 years of ADT. Hormone treatment.

Coop49 profile image
Coop49

Bill. I will tomoro morning send you a link on making the oil. It’s made using coconut oil as the carrier in the extraction of the Cannabiniol

Read up on Coconut Cannabiniol oil. You will find plenty of information

I make it in a slow cooker simmered over 5 hours. 1 ounce of cannabis heads and 600 ml of coconut oil. Top quality organic coconut oil.

Makes 600 capsules

That lasts me 3 months

youtu.be/E37RxzsRJ-k

spouse21 profile image
spouse21

Am I understanding correctly that you've been on Zytiga (and I assume prednisone with it) since June, 2018--about eight months--which brought your PSA down to .04? And you've been successfully taking a form of cannabinoil for pain control since 2017?

Coop49 profile image
Coop49 in reply tospouse21

Yes correct. The oil had started to help lower the PSA SLOWLY

I’m taking the oil alongside the drug treatment and that in itself has stopped all side affects

It’s not going to a cure me but it has given me great quality of life

My husband is also on CBD/THC oil, T3b N1 M1, Gleason 9. Not sure about results yet, but at beginning PSA dropped a lot. Do you know your ratio CBD:THC and eventually mgs of such components per day? Which strains do you use?

Did the cannabis help to drop PSA or it dropped only after Zytiga?

Coop49 profile image
Coop49 in reply to

Hi Myriam. As I make the Cannabiniol oil my self I have no way to test the CBD:THC. I use OO capsules that hold 4ml. I have been using Indica strain since I started making it

I grow one plant a year.

The method I use doesn’t infuse the THC into the oil

larry_dammit profile image
larry_dammit

Wow that sounds great. You give the rest of us hope for a longer stay here on top of the grass. Was thinking about the cannibus oil now I am going to try it. Keep up the fight.

Coop49 profile image
Coop49 in reply tolarry_dammit

Larry here is the YouTube vid that I first followed but I have refined it to suit my self as to using a muslin pouch in the process so that there is no straining the oil after simmering

Otherwise it’s messy.

Keep up the fight Larry.

Cheers Ken

youtu.be/E37RxzsRJ-k

Stegosaurus37 profile image
Stegosaurus37

Why did that young snot urologist not want to do a TURP? You're still retaining 350ml and that ain't good. My TURP was the best decision I've made on this trip.

Always remember in dealing with the medical profession, it's your life not theirs. Question everything and if the answers aren't satisfactory, find a sawbones who will give you straight answers.

Coop49 profile image
Coop49 in reply toStegosaurus37

Stego it was always a fight with him. Thru the public health system in NZ

He would ok a penal catheter but not the turp

He would say ok to the turp and put me in the system then 3 months later at the clinic would tell me that they wouldn’t do it. I waited one arvo an saw a senior urologist and he suggest the SUPRA Catheter. Why didn’t the young snot suggest that in the first place

I’ve always taken my own direction and sourced all information given to me by the specialists

RonnyBaby profile image
RonnyBaby

It is good 2 C that there are tangible benefits to medical cannabis. Note that CBD extracted from hemp oil is NOT the same (chemically superior / entourage effect) as the more commonly (selected) medical strains of cannabis.

It is not a cure all, but it can make a dramatic difference. I've claimed in other posts that medical cannabis has a lot of untapped potential.

You are addressing inflammation issues with CBD, but there is also MORE benefit if you have access to tinctures (or other quality extracts). A bit of THC, added to CBD makes it more effective. I'm talking about 5:1 or greater ratios.

Full spectrum extract, including some THCa, which is non psycho-active packs a stronger punch.

You can learn to extract your own (without blowing yourself up - LOL). There's lot of source material to check out.

We wish you well on your journey - you've come a long way !

Coop49 profile image
Coop49 in reply toRonnyBaby

Hi Ronny. Thanks mate. Your more advanced then me in in the use of

The oil has given me freedom of pain. For 5 painful years walking was agony.

This last year I’m out there doing it

Cheers ken

Not what you're looking for?

You may also like...

Advice on Darolutamide - PSA Rising

Need help. My friend has had chemo and Zytiga. DX Oct 2018 with bone mets. Had radiation and...
Longterm101 profile image

Starting Abiraterone and predniSONE

Tomorrow morning I take my first dose of Abiraterone (Zytiga) and predniSONE for metastatic...
dac500 profile image

Should/Can I take zytiga/xtandi et al without metastasis diagnosis

Background... Diagnosed in 2016: Gleason 9, PSA 10.5 Prostatectemy 2016: positive margins, no other...
Velohomme profile image

Still castrate sensitive after 6 1/2 years

So, I am a G9, I had an RP, radiation, and am on Lupron(6+ years). After surgery, the only thing...
alephnull profile image

radiation whack-a-mole?

My stage IV prostate cancer has gone castrate resistant ... I've been taking androgen blockers...

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.