Hi I'm new/ treatment advice

Hello Paul

sorry to read about how things have gone for you, a positive mind is a good thing, it’s part of the battle and on some days it will be a battle. Hormone therapy can make you tired and fatigued, but everyone is different so let’s hope you don’t suffer to much with that, same as radiotherapy, in my case I just had one day of the runs out of twenty sessions.

I’am the same as you stage four Gleason 9/10 have it in my bones, gone through tests more tests chemotherapy now more hormone medication. 
It’s good they did your spine that can be a devil, something I take might help with the bones, you get it from the doctors called Alca d3 it’s a calcium tablet helps strengthen the bones, even if it’s a bit everything helps.

take care stay strong and positive, I’ve fought it for nearly five years hopefully you will do just as well if not better.

Joe

Thank you Joe for the reply, I appreciate the information. I will have a look for Alca. Im glad to hear you are doing well and fighting it, hopefully I can do the same. My family have bought me some nigella satvia (black seed oil) as they say it attacks cancer cells. I'm not too sure, have you heard of it ? I have some pure cbd which I take which is helping with the pain

Hi Paul

A good drink to have is pomegranate juice, and tomato juice, for a supplement I take omega 3 and cod liver oil, plus and you need to look this up Pomi-t it has all the ingredients to keep PSA down, of course there not medical, but some people prefer to take these. 
Not heard of black seed oil in use for PC mainly for arthritis. For my back ( and I’am not telling you to do the same ) I bought a surgical belt help me move a bit better, keeps the back straight. 
Paul your family want you around for some time, just listen to your body, it says rest then rest, fish, white meat and whole meal try these a few times a week, everything helps.

Stay safe

Joe

Ahh thank you for the recommendations Joe I will look into them all. Take care mate and good luck 

Sorry to mother again, I am looking at any clinical trials and found one in my area, Stampede. Have you or do you know of anyone who has done any trials? If not in your opinion would it be worth while 

Regards

Paul

Hi Paul

I too received HT followed by RT.

RT whilst you are receiving it is boring - an hour of waiting around ( if the machine doesn't break down!) followed by 5 minutes on the bed. However it is vital you pay attention to what you are told by the team. Ask for a diet sheet and stick to it. I made the mistake of a a couple of glasses of wine and sprouts with Christmas Dinner. Not funny! 

Linked to this I would suggest sussing out where all the toilets are on your route to hospital in case of an emergency. Carrying one of the Macmillan cards freely available in Poole hospital, and most likely nationwide,  may also help. The RT side effects ease off after a couple of weeks when you have finished the course.

The HT is something else. Both therapies make you tired but the RT is over fairly quickly. With the HT the tiredness and lack of stamina and strength carries on until you are months after the end of the HT.  For me this is the worst part.  They will recommend you try and keep yourself fit and, again, I would recommend you do as much exercise as you feel up to.

I hope this helps.

Stuart

Hi Paul

It's worth flagging to your consultant that you'd be interested in clinical trials. We asked about Stampede a couple of years ago and at that point they'd completed the current recruitment for that phase. It also depends whether your hospital is participating.

The Cancer Research UK website provides a good summary of current/ recent trials and findings.

Cheers

Patience P

Hi Paul

There are lots of trials out there, https://prostatecanceruk.org/prostate-information/treatments/clinical-trials have a look here, ask the oncologist they have teams that specialise in trials.

I was on stampede five years ago, there are different arms of it using different methods, mine was chemo, radiotherapy and hormone treatment, but done one after another pretty aggressive.

Ask your team, and look on the net, don’t join anything till you have gone through everything, if you were like me, I trawled the net for everything to do with PC, some good some not so good. Always stay positive, try not to think why me ! It’s a very long road your on, there will be ups and downs this cannot be helped, remember cancer is not the plague your still the same person, who’s doing what he can, friends should know this.

Stay safe

Joe

Thank you all very much for your reply and information I will speak to my consultant regarding the trial, I am back at hospital today for a HT injection. Is evening primrose any good while on HT ? 

Definitely. I take one 1600mg Evening Primrose Oil and two 285mg Sage leaf capsules twice a day and hot flushes are well controlled most of the time. Things were going so well that I did try cutting down to once per day for a month or so but went back up to twice as the hot flushes were getting bad again. EPO & SL are also great for gynaecomastia which HT can cause. I get my supplies from Holland and Barratt and usually buy in bulk when they have a "Buy one get one for a penny" offer.

If the hot flushes do start to build up I have a backup treatment of Sepia Officianalis from a homeopathic pharmacy. 30c concentration and take three tablets in a single day at 11am, 4pm & 7pm (always away from food and drink) just crunch and swallow. Works wonders.

I hope that helps and good luck with your treatment.