Pace nodes trial

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Hi All, I have been diagnosed with prostrate cancer at the end of March 24. PSA 6.26, MRI scan revealed prostrate of 35cc with PI RADS 3 intermediate findings. Prostrate biopsy revealed Gleason 4+5 4/5 cores on the left hand side, no positive cores on the right hand side. Bone scan 18 April, results awaited. I have been offered a part in the Pace Nodes clinical trial. 

Has anyone experience of this? Do I have hormone treatment with this if so what side effects? Thanks in advance for any comments 

  • Hello   A warm welcome to the online Prostate Community, although I am so sorry to find you here.

    You asked about the "Pace Nodes Clinical Trial! I can tell you we have a thread on this on the forum and here's the link to take you there-

     Pace Nodes Trial 

    If you do have Hormone therapy there are a number of side effects although we don't all get them all. I think I have had most of them including Hot Flushes, Itchy Skin, Hair Loss, Erectile Dysfunction, Loss of Muscle Mass, Fatigue oh and I have grown a nice pair of Moobs, along with some extra weight - there are others too but these are the main ones.

    I hope this helps. feel free to ask any questions however trivial - you will get honest answers.

    Best wishes - Brian.

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  • Hi alfa51 and welcome to the forum though sorry you have to be here and you have prostate cancer. No personal experience of the pace nodes clinical trials, though i know some on the forum have had SBRT, which is the treatment part of the trial and the results are very promising, I'm sure some of the guys and ladies with personal experience of SBRT will be along to share their experiences, best wishes.

    Eddie

  • Hi Alfa

    There are many on here with much more knowledge than me but - for what it’s worth - my experience is that hormone therapy is the first port of call followed closely ( after 3 or 4 months - although I waited 8 months ) by 5 sessions of radiotherapy over a 10 day period. HT does produce side effects - the main ones being fatigue & hot flushes. Most cope well with these - I am now ( after 9 months of HT ) still experiencing both but I have grown used to them ( they’re not too disabling ).

    I’m sure that someone will be on here shortly to give you a much more tutored view than mine.

    Good luck!


    David

  • Thanks, l am trying to decide what my belt treatment option, major surgery is a concern. Am  I better to go with the clinical trial as a first option?

  • Surgery or HT & Radiotherapy is the $64,000 question.

    The only answer to that is to list the pros and cons of each treatment as they would affect you. The thing about surgery is that Radiotherapy is still available after surgery, where surgery isn't available after HT/RT.

    Personal opinion - I wasn't offered surgery as they thought mine had spread (it hasn't thank God) but I am a wimp and would still have gone HT/RT.

    Read the different threads on here, look at the information from trusted sources, Macmillan and Prostate Cancer UK - NOT Dr Google!!  Ask questions to Community members who have been there done that - as I say it's a personal choice.

    Good luck and best wishes - Brian.

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  • One of the early candidates for the Pace Nodes trial was  back in 2012. If you click on his name he has given a summary of his journey, but has indicated that he will give more information if you need it. He refers to himself as Mr 5% because he has needed follow up treatment. My husband has recently had SBRT to distant prostate cancer mets and were told that there is a 95% success rate with this technique and very few grade 3 or 4 side effects long term.

  • Hi alfa51. 
    I was diagnosed with very similar condition to you just before Christmas. I was put on hormones on the day I was told I had cancer. I took tablet form hormones first and then implants. I’ve just had my second implant. I have hot flushes and a little bit of erectile disfunction. However, I’m being treated for the ED. My scans came back clear so, as far as they show, it hasn’t spread, despite it being very aggressive. I’m on Pace Nodes too and I’m going for my pre RT consultation next Friday. I’m planned for SBRT with a 10 day treatment of 5 sessions on alternate days. I’m getting RT to my prostate and my lymph nodes. I researched SBRT and, although it’s new to NHS, it’s in common use around the world. Research shows that is more effective, plus, despite having a much higher dose than the 6 week ‘standard’ RT, it has shown that it has fewer side effects and my prognosis has now been changed to ‘curative pathway’. So, I hope that all the above has helped reassure you. Please keep us all updated on progress 

    best regards 

    Axel

  • Good Morning  

    and my prognosis has now been changed to ‘curative pathway’.

    Wow - you can't get any better news than that - that's brilliant.

    Best wishes - Brian.

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    Strength, Courage, Faith, Hope, Defiance, VICTORY.

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  • Hi All, After my bone scan results came back as not spread outside of my prostrate and reading the comments re hormone treatments and radiotherapy. With some mental turmoil I choose to have a radical procectomey. I had this by robotic keyhole surgery on the 28 May. I am home now, with a catheter until 4 June, which I will remove at home. The support nurses will ring me to ensure this has gone well. A follow up video call is set for 8 weeks later to review my procedure and the analysis of the removed prostrate. Hopefully this will show that the cancer cells have been removed. Further PSA tests will follow to monitor my PSA level which hopefully be minimal. I am hoping that as is the basis of my decision that this will avoid me taking a variety of drugs for a long time. I have to thank the Royal Surrey for thier support and care thus far. I will update further in due course.

  • Hi Alfa51 and thank you for your very informative update, they are always appreciated, and I can understand your decision for surgery and getting rid of the cancer quickly, and good to see you have a very good post Op care plan which we hope brings you further good news, best wishes.

    Eddie