Pace Nodes Trial

Yes, I am on monthly injections at the moment same HT as you. The tablets will replace it. Still not sure as I am getting used to the effects of the jab and may go on the three month jab. Undecided but as you say we are all different in some way with a slightly different journey. Find it good to talk though. We all seem to have the same side effects to a lesser or greater degree , but they will pass in the fullness of time. 

Have a good weekend David,

Roy

Hi Luca84 

Good morning and a very warm welcome. There are plenty of treatments for stage 4 prostate cancer, but unfortunately at the moment there is no cure. The first line of treatment is usually suppression of the testosterone using a combination of tablets and 1, 3 or 6 monthly injections which should rapidly bring the PSA down and starve the cancer of its food. This should help shrink the masses and puts the cancer into hibernation. Chemotherapy works systemically to disrupt the multiplication of the cancer cells with the aim of killing them off. With a diagnosis of bladder cancer as well then a different set of drugs or treatments is usually added in and I have attached a link to people in a similar situation.

 RE: Diagnosis of both bladder and prostate cancer 

In order to make sure that you don't get lost in the system can I suggest you either start your own thread or you continue with your question on the link I have given you. It is also helpful to put a brief summary of your brothers stats and journey so far on your profile page - just click on your avatar and follow the links to add a profile.

Please be careful when doing your research and only use reputable sites like PCUK. We all want a cure but it is very important not to take any supplements or alternate remedies without consulting a doctor first because they can affect how effective things like the hormone therapy, chemotherapy, radiotherapy etc. work. 

My husband also has stage 4 cancer and was diagnosed almost 4 years ago. I won't deny it is a rollercoaster of a journey but what we have learnt is that, as our oncologist says, 'there are plenty of tools in the toolbox'. Each persons cancer is different and it will respond to different treatments for varying lengths of time. For some, a combination of HT and chemotherapy will control the cancer for years, for others it may only be a few months before another line of treatment is needed. We are gradually working through the options.

The one thing your brother will find is that fatigue can build up so he has to try and keep as fit as possible.

Diet wise it is time to ensure a good healthy eating regime but reduce caffeine and dairy products. Whilst he is having chemotherapy he has to take additional precautions and there are plenty of tips if he is having problems.

Basically if you have any questions please come back, no matter how small or silly you might think them, because we have all done it, and I am sure some of those who have been there, done that and worn the T-shirt will get back to you.

Hi Roy68

Good morning, yes I am now on 3 monthly Hormone Injections now at my GP surgery which is much better than going all the way to the hospital.

I am also taking Hormone Tablets which means my PSA number has come down from 1000+ to 0.2 which is crazy.

The only side effect that I noticed most is Hot Sweets but I have got a number of things that I use to counter act these.

Prostate Worrier.

Hi Roy

Trust you’re still on an upward curve & the side effects of the RT are on the wane.

Touch wood my bladder / bowels seem to be getting back to normal - although still making a few more loo visits ( find myself planning where I might find an emergency loo if needed ).

HT side effects ( fatigue & flushes ) continue but can cope with these & am resigned to living with these for many months yet. Getting back to normal on the exercise front - a knee issue prevented me from my usual 3 or 4 miles walk each day but now clear to continue.

In summary - just 3 weeks after RT I’m feeling much better than I expected ( having read all the literature ahead of the sessions )

Regards

David

I'm also on the Pace-nodes trial, 22 months in having had 3 x one monthly Zoladex implants and just finished the remaining period on 3 monthly Zoladex implants. I completed my radio-therapy in April last year (5 x doses over 10 days). I have had relatively few problems, the worst being hot flushes (particularly at night), erectile non-function, severe fatigue and a continuous ache in the lower abdomen. PSA last month was 0.1 (down from 19.7 prior to treatment). 

The hot flushes started within the first month of Zoladex implants, followed very quickly by fatigue. The ache and erectile non-function followed on from the radiation treatment (12 months ago). I say erectile non- function rather than erectile disfunction as there's no penile reaction to any form of stimulation - VERY disappointing!!!

Hello Roy68 -

Just seen your comments. I am on a steep learning curve, so can I ask - What side effects have you encountered following your treatmant? What was your full treatement and over what timeframe?

Sorry for being "nosey" - I am still trying to gather as much information about prostate cancer having been confirmed I have the disease back in January this year.

Wondering if anyone on HT ( Decapeptyl injections ) has experienced increases in blood pressure and cholesterol ( particularly triglycerides ).

My GP has increased my Ramipril dosage twice in the last 2 months - BP stabilised initially at 130/70 but now up to 155/90. These latest readings taken within a few days of latest injection - may be a coincidence? And my cholesterol levels - after several years of being under control have increased ( triglycerides doubled from 1.15 to 2.4 ). Also suffering back pains - may / may not be linked? All a bit worrying.

I’m speaking to both my oncologist & GP next week but would welcome any thoughts / experiences / advice.

Thank you.

Hi David,

Sorry for the tardy reply. Glad you are feeling a lot better. I am now six weeks post RT and apart from the bad couple of days in the second week all seems to be going well. Bowels appear back to normal> Peeing slightly different. Up a couple of times in the night and a bit of stinging. The same for the first pee when I get up. Rest of the day seems fine. No accidents - Fingers crossed. 

I toyed with stopping the monthly jab and going onto tablets. Changed my mind and decided to go onto the 3 monthly hormone jab and uped the streangth of my anti depresants from 15mg to 30. feeling a lot better. As I mentioned  the hormones gave quite a bought of depression. Seems to be under control now and first 3 month jab next Wed. 

Excersise wise all seems good. Plenty of walking and gym two or three times a week. i dont go mad mind. Not in a competition just keeping as healthy as I can.

All the very best and I hope you are as lucky with your follow on symptoms as i seem to have been with mine. Again fingers crossed. Shouldn't tempt fate really.

Roy

Hello NoahsArk .

Unfortunately hormone therapy can cause the side effects that you are experiencing, including back pain. I have attached an information sheet which describes the side effects. Hopefully it will give you some pointers for discussion with your oncologist and GP. 

www.macmillan.org.uk/.../triptorelin-for-prostate-cancer

Hi Andy,

You are on a different drug regime than me but hot flushes abound. As my hormone treatment kicked in I started to suffer badly with bouts of depression which then started sleeplesness which seemed to generate more depression. Went onto anti depressants. Changed man. They helped me sleep and hot flushed reduced to a few fairly mild ones that I can cope with. As for ED yes me too sadly. Will be discussing with my doctor as my hormone treatment progresses for possible treatment for ED until the hormones end and they work their way out of my sysyem.

All the best.

Roy