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User
Posted 18 Nov 2024 at 23:11
Sorts out parasites on my sheep, not sure it's good for anything else.
User
Posted 19 Nov 2024 at 08:06

Leila , everything has to start somewhere, lots of research papers about it. 

Thanks Chris 

User
Posted 19 Nov 2024 at 09:19

Yes Chris, I agree, I’ve read a number of good peer research papers, and listened to a number of people who’ve used it with positive outcomes. It’s cheap, seems to have some efficacy and by all accounts a very safe drug. A number of cheap off label drugs are being tested and from what I’ve read have promising futures. Metformin, Ivermectin, and others. 
Let’s hope it’s taken seriously soon. 

Leila.

 

 

 

User
Posted 19 Nov 2024 at 11:23
Metformin modifies the cellular response to sugar and insulin, the same effect can be obtained by not consuming carbohydrates..

Ivermectin is cheap as chips and already proven to be safe in humans, I have no idea why it is not being trialled more widely for cancer treatment. Maybe they are concerned about parasite resistance and loss of efficacy for parasitic diseases where it has saved millions of lives already?

User
Posted 19 Dec 2024 at 14:36

Another PSA results at <0.1.  I persuaded David to have the test before Christmas. We didn’t have much worry time before as we had five days without power due to the recent storms. We were getting in logs, carrying heavy containers of water ( we have a bore hole no power no water) our generator needed daily love care and tweaking. PSA came round the day after the electricity came on, good timing. 
Whether it’s the red wine, HT, my research into supplements, ivermectin or metformin, and the other supplements he has , who knows, but he’s doing ok, we never get complacent. I try and read about what’s going on, both mainstream & alternative.

My view is it’s my  careful nagging, loving support and our rebellious nature and way of life. It’s over nine years since diagnosis Gleason 9 Tb3, a day I’ll never forget. 

David gets tired and drops off to sleep easily, but we are still managing our acre of land growing food, he’s still writing music, and playing every day. He’s getting one piece recorded by a well known artist. 

A dear GP friend has suggested David’s alternative meds are clearly part of his undetectable situation. 
We celebrated his <0.1 with friends last night, and we are planning our Christmas at home, house decorated logs in, generators at the ready, just in case.We are thinking about what to grow next year, our planned holiday in January and enjoying every day. So you lovely G9 lads, stay strong, and I hope you and your families have a good Christmas & NY. 

Leila. 

 

 

 

Edited by member 19 Dec 2024 at 14:39  | Reason: Not specified

User
Posted 19 Dec 2024 at 15:26
Thanks for your lovely update Leila. So pleased for you both. I’m guessing it’s the red wine. Certainly works for me. Just want to get to my 58th Birthday June 7th. Will be the 10 year point since surgery. Yes I’m doomed , but no mean feat I guess. Enjoy Xmas x
User
Posted 19 Dec 2024 at 17:45

Great update Leila, long may it continue

Cheers
Bill

Edited by member 19 Dec 2024 at 17:46  | Reason: Not specified

User
Posted 19 Dec 2024 at 17:45
Great update Leila, long may it continue

Cheers

Bill

User
Posted 19 Dec 2024 at 17:56

Leila, great news,long may it continue. Really pleased for you both.

Thanks Chris.

 

User
Posted 20 Dec 2024 at 02:09
Great to see your post Leila. My OH is at the beginning of this journey - also G9 T3b, PSA 24.7, thankfully N0M0. He’s on a 3 year course of HT (3 monthly Prostap injections, as well as Abiraterone & steroids) and will have 20 fractions of RT early in the new year.

Can I ask, did David find that the Prostap side effects built up, getting steadily worse over the 3 years, or do things get easier as the body becomes accustomed to them?? Kenny is struggling with very little sleep, fatigue, joint pain and some hot flushes. He and David seem to have had a very similar diagnosis so it’s really encouraging to hear that David is doing so well.

User
Posted 20 Dec 2024 at 04:04

Brilliant update Leila. Keep living the 'Good Life' Have a great Xmas and fab New Year. 👍

User
Posted 20 Dec 2024 at 12:25

Hi Kazzy, 

David does get side effects from the Prostap injections, muscle ache, fatigue and general pains. He tries to combat the side effects with exercise, we have a rowing machine. The gardening and our lifestyle tends to keep him active in summer, and rowing in winter.
He doesn’t take any steroids or abiraterone, he was offered apalutamide but declined after reading the side effects. 
David also had a heart attack four years ago, and had one stent fitted, the apalutamide increases his chances of further heart damage. 
He is also on a lot of supplements and follows a metabolic regime which the NHS doesn’t  support currently, although there is a lot of peer research papers to support it. 
We have read extensively about mainstream and alternative treatments for PCa and so far he’s doing well. 
David is 74, stubborn and has an iron will to keep going. He does rest when he needs to and his sleep pattern is late nights and late mornings, this comes from a lifelong job as a musician. Some of the treatments he has had privately and the metabolic regime is managed was managed by a private oncology clinic. We also have a friend who is a GP who supports  metabolic regime, and advises him on supplements. Our outlook and lifestyle is quite alternative. I hope this helps you both . Leila. 

User
Posted 20 Dec 2024 at 12:30

Thank you for all your lovely messages, I’ve just read all of them to David. This forum has been a lifeline for me over the years and I want men to know that even with a Gleason 9 diagnosis life can be good. 
I hope you all have a good Christmas and NY.

Leila x

User
Posted 23 Dec 2024 at 12:13

Great news and lovely update Leila. Really pleased for you both. You are doing so well and keeping so busy. Don’t know how you do it 😎

 

Hope you have a wonderful Christmas and New Year with no power cuts….

 

I suspect you have an open fire so you can sit in front with a nice glass of wine and a crappy film on …. 

 

Take care 

Phil

User
Posted 24 Dec 2024 at 01:37

Thanks Phil, 

We have a log burner and Rayburn, this evening we had friends here, glass of wine and the fire going.
David takes a load of well researched supplements and some prescribed off label drugs. Some quite powerful research on Fembezadol and ivermectin. He’s the three monthly Prostap as well.
Who knows whether it’s the alternative approach, but he’s doing ok so far. We have looked into the Fenbezadole and Ivermectin and it has some good reports, 
I hope you and your family have a lovely Christmas together, and enjoy a glass of something good.

Take care and Happy Christmas. 

User
Posted 09 Feb 2025 at 13:17

Do any of you lovely lads feel the cold? David is consistently cold, he wears thermal tops in the house and thermal trousers when he goes out. 
Our house is very warm, to the point where I’m wandering about in the house in me smalls (thankfully we live rurally, as it ain’t a pretty sight)  is this a common symptom, or a quirk he has developed. 
I’m considering sleeping in the garden 😂

 

User
Posted 09 Feb 2025 at 13:37
Hey Leila I’m feeling the cold much more after 4 yrs of Decapeptyl. Not as bad as your hubby but yes it’s me that’s always clicking the heating up 😂
User
Posted 09 Feb 2025 at 14:04

Thanks Chris, it might be the Prostap, I’ll do a bit of reading up on it. 

User
Posted 09 Feb 2025 at 15:00

Liela, I am due to start zoladex in a few days time and there was a post on another forum saying the same thing. Is feeling the cold just a getting old thing, I often pull a fleecy blanket over myself when sat on the sofa , I also put a hat and scarf on when I go out walking.  Things I didn't used to up until a couple of years ago.

Thanks Chris

User
Posted 09 Feb 2025 at 16:33

Thanks Chris, looks like a combination of getting older and the HT. Think I’ll be putting up my tent in the garden. 

 
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