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User
Posted 02 Nov 2023 at 23:02

Hi JedSee,

He is, but it’s much more than a diet, he is also using the Care Oncology Clinic in London. 
Are you following the How to Starve Cancer protocol?

Leila 

User
Posted 02 Nov 2023 at 23:20

Great news Leila, really pleased for you both. Enjoy your winter holidays x

User
Posted 03 Nov 2023 at 19:43

Hi Leila,

Thanks for your reply.

I'm not following Jane McLelland's protocol, although I've taken on board a lot of her guidance on diet and supplements and try to follow them.  I did look into the Care Oncology Clinic, but they seemed to want me to provide lots of regular tests which my GP was unwilling to provide.  This would have meant me paying privately for all the tests on a regular basis.  My GP was also unwilling to provide Metformin, but I'm taking Berberine and Resveratol as supplements, so I hope they'll provide some control of blood sugars.  I was already taking Atorvastatin and Aspirin anyway (as Jane recommends).   I also take Pomi-T and  a mix of Turmeric and Black Pepper (Piparine).

It's interesting that Jane has been alerting people to the issues of an unbalanced microbiome for years and this is coming much more to the fore in recent scientific reports.  Also, just the other day, I saw a newspaper article reporting a scientific study which suggested that low dose Vitamin C may actually be harmful to cancer patients, which Jane has highlighted in her book several years ago.

It's great that David is doing so well that you're able to plan winter holidays, as well as your busy lives with your horticultural interests.  Whether it's because of Jane McLellands' protocol, or because the universe is smiling on you, enjoy!!

Best wishes,

JedSee.

 

User
Posted 04 Nov 2023 at 14:45

Hi JedSee,,

What a lovely post, thank you. I’m surprised your GP won’t play ball, you’d think it would  be in their interest to keep the customers healthy. 
David  pays for the Care Oncology Clinic medication, but he gets the blood tests done at the surgery, thankfully. 

We have worked very hard at keeping a good rapport with the clinicians and practice nurses at the surgery, and believe me it has been an uphill struggle. We have spent a lot of time researching and ensuring we are as well informed as we can be. David’s NHS oncologist was unaware of the Jane MacLelland  protocol, and not interested. He was a chemo and pharma man.

Ive been reading about the benefits of vitamin D quite a bit of research has been done about it, and it does seem to have good foundations.

Thankfully I quite like research and reading, and I’ve found some of it really interesting. 
Berbarine is good, metformin isn't an expensive drug, you’d think your surgery would be more obliging. 

Whether it’s the life style, the medication of the organic veggies, who knows.  
 Leila 

 

 

User
Posted 04 Nov 2023 at 20:25

Thanks Leila - you're an inspiration!  😀

Best wishes always,

JedSee,

User
Posted 06 Nov 2023 at 14:05
Fabulous news and post like yours really give me long term hope x
User
Posted 27 Dec 2023 at 17:21

A Merry Christmas and the most Healthy of New Year to all.
David’s  has upped his exercise regime, eating sensibly and taking his meds and supplements. His last PSA was <0.1 

He has constant aches & pains, but he manages them well. Diagnosed over eight years ago, now stage 4 and on lifelong HT. His fatigue levels have increased, but he is 73, so I expect it’s a mixture of age and PCa. 

He is mostly positive, but as the years progress he does wobble. 
Another year awaits us, hoping for the best of times.

Leila 

 

Edited by member 27 Dec 2023 at 17:22  | Reason: Not specified

User
Posted 27 Dec 2023 at 20:25

Hi Leila, merry Christmas, glad things are going OK.

Dave

User
Posted 27 Dec 2023 at 20:43

Thanks Dave, hope things are good with you. 

User
Posted 27 Dec 2023 at 21:49
Best wishes friend. Onwards and upwards. Keep on making the most of it all. I’m 3 yrs into lifelong HT now and have been very lucky tbh. Next result will be very telling after a cease in falling but I’m still going strong. Best wishes moving on and a HNY when it arrives
User
Posted 27 Dec 2023 at 22:23

I have just read this through from the beginning with interest, as your dh has a similar diagnosis to my dh. Dh had brachy 9 years ago. Psa was 0.01 for almost 5 years before increasing. We found out in October after psma scan that the psa is coming from lymph nodes. The prostate is clear though, as are the nodes near his prostate. He is now on zoladex and enzalutamide for life, or until they stop working. I have been trying to research too. I have ready some of the Jane McClelland stuff. Dh is already on statins. He is on the verge of being put on metaformin as he’s been prediabetic for several years, he’s been trying to not get put on it, but it sounds like it might not be a bad thing according to her works. Dh wouldn’t look into it further though. Being a retired farmer, he wouldn’t give up meat. I have been trying to research prostate cancer in lymph nodes with no cancer in the prostate without success. I can’t find anything much about it. DH is young for mid 60’s. I am 15 years younger so keep him on his toes. He doesn’t do anything for fitness apart from dog walks. I have always struggled to keep up as he walks fast, but since the extra drugs he can’t go far.  He was fine on zoladex alone with no side effects apart from being tired by early eve. but the enza added has made a big difference. He’s wondering whether he should have delayed enza. I shall be following your thread with interest now to see how your dh is doing. 

User
Posted 27 Dec 2023 at 23:45

Hi Leila,

I’m pleased that your dH’s PSA is <0.1, long May it continue! Thats my goal too as I’m currently 0.1 after RT 8 months ago.

Im interested in how he manages his aches and pains as that is by far the worst side effects of HT for me, especially my knees which seem to be getting worse no matter what I do. Any hints or tips would be most appreciated.

All the best for the future.

Derek

User
Posted 28 Dec 2023 at 00:36

Chris, Thankyou for your lovely message, and I hope the oncoming year is kind to you and your family. David’s been quite lucky too, he has down days sometimes, but bounces back the following day, his mantra is I have a lot of living to do. 


Decho, David manages his aches and pains in a number of ways, excercise, post doctoral studies in moaning 😉and on rare occasions he takes a natural herbal remedy that really relaxes him and relives any pain, it also relives some of the stresses he feels cos of the stage four cancer. He also goes into his studio in winter and writes music, he finds singing and playing a relaxant too. Summer he’s outside in the garden. We live  rurally  with log burners and a Rayburn so it’s bringing in logs and cleaning fires  every day in winter. Our lives can be quite active.

Wiosal, Yep, He follows the Jane McLelland protocol along with other supplements, David also has a consultant at the Care Oncology Clinic in London, they follow a similar regime to Jane, we aren’t veggies, we eat both chicken and fish mostly chicken, lots of fresh home grown veggies,  little diary, no red meat and no sugar, thou he’s had a few chocs over Christmas. The COC regime is statins, metformin, antibiotics and an anti parasitic like ivermectin or fenvezadole. These off label drugs really seem to make a difference. The daily regime takes a bit of time and some commitment, but it’s become part of his routine. We eat no processed foods and I make all our food from scratch including bread. I hope your husband can see the logic in following the protocol as it seems to be positive for David so far, thou we don’t be complacent. 

Thank you all for your messages. May 2024 bring us health and peace of mind. 

Leila 

 

 

 

User
Posted 28 Dec 2023 at 13:32

Hi Leila.

Best wishes to you and David for 2024.  I always follow your story with interest.

JedSee.

User
Posted 28 Dec 2023 at 13:40

Thanks Jedsee, we have both done quite a bit or reading and research both mainstream & alternative….. we don’t get complacent, and remain positive. 

Leila 

User
Posted 28 Dec 2023 at 15:10
Happy Christmas to you both Leila - and wishing you a happy, healthy and uneventful 2024! xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Dec 2023 at 15:52

Hi Leila. Great to hear all is going well in your household 👍. 
Hope you’ve had a wonderful Christmas and wishing you and David a brilliant New Year. 
Phil

User
Posted 28 Dec 2023 at 17:47

Thankyou, yes, all is well in our household. Looking forward to a happy healthy 2024. 
Leila xx

User
Posted 23 Jan 2024 at 11:56

David had his PSA on Monday just got the results, he’s a happy <0.1 once again. Though his red blood cell count is  low, so I’m gonna have to look into that. The week before his PSA he get more aches n’ pains, extra fatigue, and generally feels low. This morning we get the email, and he feel much better. Happy days, over eight years since disgnosis .

Leila 

 

 

 

User
Posted 23 Jan 2024 at 12:00

That is really great news Leila. Long may it continue. I’m sure you’ll get the blood count sorted. 
Funny how the anxiety gets to you. I have my blood test later today and see my consultant next week. Results of my scans then and I’m a bundle of nerves and so tearful. 
I know how David feels…. Hope you’ve got a while till the next one. 

Phil

User
Posted 23 Jan 2024 at 12:25

Great news

Dave

User
Posted 23 Jan 2024 at 12:39
Nice news Leila. We all understand the test anxiety. It’s awful. I too am now an 8 year survivor with T4 diagnosis. I get my jab in a fortnight which is exactly 3 yrs on HT , and my blood test also which is showing signs of turning 😢. I think a low blood count is not too serious and can be helped with diet and medications hopefully. Sending love to both x
User
Posted 23 Jan 2024 at 13:54

Leila, great news on the PSA . Take care.

Thanks Chris 

User
Posted 23 Jan 2024 at 17:49

Thank you so much for the lovely messages and comments. This group has become an important part of our PCa world. David is planning to celebrate watching the footies on his computer and having a bottle of beer. I am looking  at planning a long awaited holiday now he’s in the right frame of mind. 

Love and heartfelt thanks to you lovely lads.

Leila xx

User
Posted 23 Jan 2024 at 18:46

You’re right Leila - happy days indeed

 

Edited by member 23 Jan 2024 at 18:48  | Reason: Not specified

User
Posted 23 Jan 2024 at 19:17

👍Always good to see that less than sign, can't get better than that.
Get that holiday sorted and enjoy it.

Cheers
Bill

Edited by member 24 Jan 2024 at 18:46  | Reason: Not specified

User
Posted 24 Jan 2024 at 01:14
Yay! 🎉🍷☕

(Obvs the glass of wine is for you & the cup of tea is for me) xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Jan 2024 at 08:32

Great news about the PSA, so pleased for you both. I just hope one day soon I will be able t9 join the ’undetectable’ club🤞

All the best for the future,

Derek

User
Posted 02 Mar 2024 at 14:52

Have any of you lovely lads had really sore skin outbreaks, David’s groin area is red raw, he’s really suffering ( so am I 🙁) with the side effects. He’s had steroid cream, it helps but not much. He’s wondering if it might be a side effects of the Prostap ? Any ideas suggestions. It’s so bad he can’t even do his workout in our home gym.
Otherwise he’s doing well, energy levels low, but weather doesn’t help, roll on spring, we have lots of gardening plans. 

Thanks

Leila 

User
Posted 02 Mar 2024 at 15:19

This thread is relevant.

https://community.prostatecanceruk.org/posts/t28059-Hormone-Treatment-Skin-Rash

I don't know if they found a solution.

Dave

User
Posted 02 Mar 2024 at 16:39

I get heat spots in my groin when I sweat a lot, usually after walking or cycling. This only started after my RT so put it down to that. I use a zero base cream which I was given during RT for my bum and that seems to help.

User
Posted 04 Mar 2024 at 11:58

Originally Posted by: Online Community Member

Have any of you lovely lads had really sore skin outbreaks, David’s groin area is red raw, he’s really suffering ( so am I 🙁) with the side effects. He’s had steroid cream, it helps but not much. He’s wondering if it might be a side effects of the Prostap ? Any ideas suggestions. It’s so bad he can’t even do his workout in our home gym.
Otherwise he’s doing well, energy levels low, but weather doesn’t help, roll on spring, we have lots of gardening plans. 

Thanks

Leila 

 

Hi Leila, I’ve not had any specific area of skin problems but my skin is definitely much thinner and drier than before HT. I’ve only got to knock myself and it cuts then the missus moans as i get blood on the bed covers…. Ive been busy DiYing and I’m now covered in plasters so i dont get blood on anything….

Might have to try something in the bath to hydrate the skin a little.

Cheers

Phil

User
Posted 17 Apr 2024 at 12:44

Just received David’s PSA results, < 0.1 so we are delighted. We have just been discussing the strain of waiting for the results, it really doesn’t get any easier. 
We are now  planning an evening out with friends ,to celebrate, and then a season of celebrations for our anniversary and  my birthday.

Looking forward to a lovely summer, less rain and more sunshine. 

This bl#%dy disease takes its toll, but we ain’t giving in, we are both staying strong and positive, well most of the time.

Leila. 

 

 

User
Posted 17 Apr 2024 at 13:38
Really happy for you Leila xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Apr 2024 at 14:26

👍

Dave

User
Posted 17 Apr 2024 at 16:35

That’s great Leila. It’s not fun waiting for results … I’m still on 4 weekly checks/consultations and it drives me mad. Soo looking forward to getting a bigger break… 

Hope you have a great time celebrating this result, your anniversary and birthday as well. Enjoy every day 👍

Summers coming ☀️, won’t be long and we’ll be enjoying those long evenings in the garden with a little tipple 😁… 

Phil

User
Posted 17 Apr 2024 at 17:45

Thanks Phil, By the time our surgery had mucked us about, and we had to call them three times, we were both on edge, then we got the results,phew, stress release.
I hope you get a break from all the checks and consultations, that sounds quite stressful, just what you don’t need, but I suppose you are being cared for and monitored, and that's good. 
We count every day as a good one, and enjoy, yes, a good summer, gardening followed by the odd glass of vino in the garden. 

Take care.

Leila

 

User
Posted 17 Apr 2024 at 19:03

Lelia, great result,long may it continue. 

Thanks Chris 

User
Posted 17 Apr 2024 at 19:20

Hi Leila,

That's great news!  Hope you have a great Summer.

Best wishes,

JedSee.

User
Posted 17 Apr 2024 at 23:18

Great news Leila I’ve just joined the <0.1 club and it’s a great feeling.

Long May it continue for us all🤞🤞🤞

all the best,

Derek

User
Posted 18 Apr 2024 at 11:13

That’s brilliant news Leila, keep enjoying life together.

Ange x

User
Posted 18 Apr 2024 at 20:06
Love this Leila. Very pleased for you. Stay strong as ever 💪💪
User
Posted 19 Apr 2024 at 09:34

Thankyou for all the lovely messages, we are both so chuffed to receive them. Staying positive and strong can sometimes be a challenge, but giving in or giving up just isn’t an option. 
The week before his PSA our drains were blocked ,we live rurally and have a cesspit, without too many details it was because we had so much rain, we dealt with that, then the rain caused another few challenges for us. At least it kept our minds of the PSA. Celebrating the <0.1  PSA, less rain, birthdays and anniversary, with friends a meal out, and trip to the theatre. This evening I’m planning an evening in the garden lighting our chiminea, sitting there star gazing with a glass of wine. The skies here on a clear night are quite spectacular. So thanks once again, we will care for each other and David will enjoy watching Charlton on Saturday and he’ll be there in front ofhis  computer shouting if they score. I’ll be at the other end of the house keeping out of the way, and maybe learning a few new words, haha, I doubt it. 
Leila 

User
Posted 19 Apr 2024 at 12:10

My post tend not to be about the ‘technical’ aspects of PCa, but just how we manage it, David was diagnosed over eight years ago, nearly nine, he’s also had a heart attack. His diagnosis was Gleason 9 Tb3, he’s had HDR Brachytherapy, Radiotherapy & he’s now on lifetime HT. 

He gets tired, he has some pain most days, he can get emotional. He takes  supplements and alternative off label medications  privately prescribed by an oncologist.
Life is not what we had planned, but it’s fulfilling, mostly happy, he has no sexual feelings, which is hard for us both, he is loving, and we enjoy intimacy, sometimes sexual if I’m lucky.

I suppose what I trying to put across, is, yes life changes, yes it’s hard and we have to remind ourselves he’s nearly 74 still fit exercises daily, gardening, good social life, he writes music, plays, sings, keeps abreast of world events, and that’s enough to put a damper on life these days. 
David is always game to try new things and has also ventured into the world of painting, we now have a room decorated in his art. 
If he didnt have PCa we would have continued  travelled extensively, we love backpacking around. I suppose what we have done is reevaluated our lives to manage, and still enjoy. I hope this shows, life changes, and has challenges, but we’ve done our best to rise to meet the challenge, not too much rising  these days 😉 I hope this gives some positive outlooks for some of you lovely lads and your families. His last PSA was <0.1 .

Edited by member 19 Apr 2024 at 12:13  | Reason: Not specified

User
Posted 07 Aug 2024 at 13:31
David is on lifelong HT and he is experiencing hot flushes and what he describes as a cold tingling feeling. He’s been on HT for over 2 years, since he was diagnosed with stage four PCa. He gets tired, his energy levels are sometimes quite low, though as I remind him he is 74, still managing the garden with me, and still writing music and singing.

He finds the sweats and cold tingling feeling quite debilitating, has anyone who has these symptoms got any suggestions.

He is planning to take black cohosh from today, I take it for my ongoing hot sweats, so we hope it might help him.

If any of you lovely lads has any helpful suggestions I’d really appreciate your help.

Thank you

Leila

User
Posted 07 Aug 2024 at 14:17

The standard complimentary therapies are:

Sage (not with Enzalutamide);
Evening primrose oil;
Acupuncture.

If these don't work well enough, there are prescription medications which his oncologist can prescribe:

Cyproterone;
Medroxyprogesterone;
Megestrol.

Using any of these requires occasional liver function tests, to check his liver is handling them. If Cyproterone works, you can usually stop taking it and the effect persists quite a while, and when it wears off, you can restart it again.

User
Posted 07 Aug 2024 at 18:46

Thanks Andy, David is on apalutamide so I dont think he can take sage. He has tries oil of evening primrose and it didn’t really touch the symptoms. 
Acupuncture sounds like a possible way forward or maybe see if he can have the  Medroxyprogesterone, he wants to give the cohosh a go first. 

User
Posted 07 Aug 2024 at 21:56

Wild Yam  is a potent phytoestrogen rather than tablet form cream would be better bc it would bypass the liver trouble is wild yam is made into both estrogen and progesterone products - you would need the seller's assurance it is estrogenic 

 

User
Posted 07 Aug 2024 at 23:07

Hi Leila,

I had acupuncture and it helped with my hot flushes for a while. If you know of a good one, it’s worth a try.

Derek

User
Posted 13 Aug 2024 at 18:36
David has started sharing my black cohosh, it does seem to be helping him with the hot flushes, and he’s sleeping better too. So, now we are both taking it, as we both get hot flushes. I can see on many levels why it is sometimes referred to as ‘ the couples disease’ I’ve had to buy a double dose of the stuff. We were talking earlier and David reminded me it will be nine years in September since his diagnosis. He’s on life long HT and a myriad of supplements and stuff. His last PSA was <0.1, he had a heart attack four years ago and now has one stent. He fell over last week, and now has a misaligned sacrum, which seems to be easing off with the help of manipulation, excercise, physio and a lot of moaning. He also has Dupuytren’s contracture which he hopes to get a. Injection to help relieve the tightness Thankfully he can still play his guitar. Other than that he’s doing great, he enjoys life, I’ve advised him I’m not looking for a toy boy yet. 😂

Leila

 
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