PACE NODES Clinical Trial

Hello Brian (BitOrange) 

A warm welcome to the online Prostate community - although I am sure you would rather be elsewhere.

As I often say, we all embark on this "journey" and via a different rout ewe all aim for the same destination - I am 28 months into a hormone therapy journey and my quality of life is good - but you do have to work at it.

We have quite a few Community members on the Pace nodes Trial and here's the links to the earlier threads -

 Pace Nodes Trial 

 Pace nodes trial 

I do hope this helps - Please keep us posted  as  to your progress and el free to join as much as  you wish.

Kind Regards - Brian.

Hi BitOrange.

See my profile for details. 
I am also in Pace Nodes and I am due to start my SBRT in a week or so. I went to have my pre-scan consultation yesterday (Monday) where I was given loads of info and my instructions for the dreaded enemas and hydration. My scan is on Friday and SBRT will follow soon after. I am having the prostate and the pelvic lymph nodes treatment. This is 5 sessions over 10 days, instead of the original plan of 6 weeks, every day except weekends. The benefits of this (according to the consultant) are that I am now on a curative pathway, which wasn’t ’on the cards’ with the 6 week treatment. The other benefit is that there are fewer side effects with SBRT too!  I am on hormone treatment and it is a pain! Hot flushes, mood swings and poor sleep, along with still having to get up for a loo visit 3-4 times a night. However, inconvenient they are and they really are!  They haven’t stopped me from going out camping and walking and, when I look at the big picture, they are worth putting up with, considering the end result being ‘curative’ so, I will be able to go to my youngest son’s wedding ‘cancer-free’ in August  

cheers

AxelH

Thanks, Champ, for the warm welcome. As you say, I could do without being here but needs must. 

I'm expecting to pick up my HT drugs tomorrow. Do we all take the same ones or are they tailored to individuals or for other reasons?

Best

Brian 

Good Morning Axel H 

As you may have read elsewhere on the forum a few weeks ago I had a dose of the "Hormone Therapy Blues" but those two words:

Axel H said:

curative pathway,

kept me going and apart from the usual fatigue and nocturnal visits to the toilet all is well.

Thanks you for your continued support.

Best wishes - Brian.

Hi Brian

Welcome to the forum. There are some great guys on here - most of which much more knowledgeable than me - but I can offer some personal experience.

I am Gleason 8 - locally confined but aggressive. I began my journey in July last year & have been on HT since then ( almost halfway through a 2 year course of 8 injections ). I too opted for Pace Nodes & randomly received the prostate RT ( ie not lymph nodes ). I completed the RT a month ago & experienced some bowel problems although nothing too severe - just visits to the loo 3 or 4 times a day. Other than that - touch wood - I have not really had any other issues. The HT continues to give me hot flushes - though these are now confined to when I’m in bed - & fatigue. 

Speak to the trials nurse regularly & am due to receive a call from my oncologist later this week. Next face to face not until September when I will have my PSA checked.

All in all my journey has been much more straightforward than I imagined - my only real frustration being the 9 months wait before the RT began ( most commence their RT much sooner I believe ).

Good luck!

David

Hi Brian (BitOrange) 

The normal protocol is 28 days on Bicalutamide tablets (to prevent hormone flare - a temporary increase in your hormones)..

Half way through these it's time for your first injection of the Anti-androgen drug. This can be one of many and depends on your team - Prostrap, Zoladex, Decapeptyl there are others.

The injections can cover 4, 12 or 24 week periods dependant on your team - we are all different.

My drug of choice is Decapeptyl (well my Consultant's choice) and as I am on HT for 3 years I went right onto 6 monthly jabs which are given in my gluteus maximus.

Attaches is a link you may find of use:

https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/hormonal-therapy-for-prostate-cancer

I hope the above helps.

Just remember the one side effect we all get is fatigue - and the answer to that one is keep as fit as possible.

Best wishes - Brian.

• Hi Brian. It’s difficult to spin ball the plates and keep on top of the hormone mood swings. I don’t think I’m any different to most people and the occasional blip is expected. As for keeping spirits up, my wife actually accused me of being in denial about my cancer because of the way I wanted to carry on as normal. Haha!  

Many thanks, Brian. That's brilliant. 

I'll be in touch. 

Best

BitO

Hi BitOrange.

A very warm welcome from me it's great to meet you today sorry it's under these circumstances but you have come to the right place for help/support.

Unfortunately my prostate cancer is terminal so I haven't had any experience with the pace nodes trial but you should be getting some help/ advice with this topic.

Please please let me know if there is anything that I can offer you.

Prostate Worrier.