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User
Posted 13 Aug 2024 at 20:03

Thanks Leila.

I wish you both the very best of health.

JedSee.

User
Posted 13 Aug 2024 at 20:50

Hi Leila, sorry can help with the hot flushes, I am dodging HT for the moment. Take care of each other.

Thanks Chris 

User
Posted 14 Aug 2024 at 10:29

Great to hear your update Leila. And that things are going pretty good. Hopefully you can sort the hot flushes out - for both of you. It’s one of the side effects I’ve managed to dodge .. 

Ive had a couple of falls lately whilst out and ended up with cuts and bruises. It’s a bit embarrassing especially in front of a whole stand at Brands Hatch 🤦‍♀️ I probably need to get out and push myself a bit which will help with tired legs and breathlessness as well. 

As I just said to ChrisJ keep up the resistance and don’t let it grind you down. 👍

Take care 

Phil

User
Posted 01 Oct 2024 at 11:52

It’s that time again, just got David’s PSA results a happy <0.1 and all his bloods seem to be good. Just waiting for the vitamin D results to come in. 

David was diagnosed nine years ago this month,he takes a boat load of supplements and some ‘ off label’ prescribed meds along with his three monthly Prostap injection, lots of fresh veggies, no red meat, no processed food, and very limited sugar. Now whether it’s the regime, the diet, or whatever he’s happy. 
I tell him it’s my love  and a bit of nagging thrown in to keep him on his toes. 

Keep strong you G9 lovely lads.

Leila.

 

Edited by member 01 Oct 2024 at 13:18  | Reason: Not specified

User
Posted 01 Oct 2024 at 11:58

Hi Leila. What great result, so pleased for you both. I imagine it’s a bit of everything keeping it all on track. Keep it up 👍

Take care,

Phil

User
Posted 01 Oct 2024 at 12:09

Wonderful news. Best wishes to you both.

User
Posted 01 Oct 2024 at 12:29

Leila, great news, long may it continue. 

Thanks Chris 

User
Posted 01 Oct 2024 at 18:42
Nice news Leila. Good to hear some better news. Keep well both x
User
Posted 01 Oct 2024 at 19:22

Great new Leila, I’ve just had the results of my latest PSA test 6 months since a had my last ever(hopefully!) Prostap Jab. Testosterone and PSA both undetectable. I can’t believe how much better I have felt since this stuff was out my system. My energy levels are high, my joints get better by the day, flushes better. All this even though I have zero testosterone.

All this has made me think that if ever I was in the position where it was HT for life I would seriously consider having an orchidectomy.

Onwards and downwards(PSA!)

Derek

User
Posted 18 Nov 2024 at 12:52

Has anyone done any research into ivermectin, I’ve done a bit of reading and it does seem to have some interesting results.  

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

 
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