Hello everyone.

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Hi, Just found this forum and looking forward to meeting you all.

Brief summary, I am 70 and at stage 4 in my journey. I cannot fault the NHS here, they have been wonderful. For past couple of years been on Prostrap 3 and PSA currently undetectable. I have the PSA test every 3 months so always a nightmare waiting for the results.

Downside, as I am sure you all know, are the sweats, hot flushes etc. I have them all, but the longer I am on it  (Prostrap 3) it has not gotten easier, with multiple sweats during the night making me quite tired all the time. Also getting more fatigued. Currently trying Sage, no use so far but Oncology nurse suggested Cider vinegar. Anyone tried this?

On the plus side I am still working (I run my own business) and have excellent support from my wife.

There is a lot more to this story and happy to share if interested. 

Looking forward to chatting with you.

John

  • Good afternoon John ,   Welcome to a very supportive group of people  who will give you support and assert your questions or give you links to check out .

    my husband was diagnosed March and is on Prostap, Abetaterone and Prednisone . Limited flushes/ sweats but pretty fatigued.  He’s due to start radiotherapy shortly . 
    Best wishes to you and your wife 

    Liz & OH  x

  • Hello John ( 

    A very warm welcome too from me to our little Community - we are a decent bunch!!

    If you would like to share the story of your journey with us - go to your home page - click on the chair - top right - then profile and then edit. Once you have written something just click on "Save".

    You can read my story by clicking on my avatar or user name.

    Like you I am still working at 69 - although slowing down and am only a T3 so with the help of my wife everything is good. Your post is vey positive - apart from the hot flushes - sage tablets did it for me - but they don't work for everybody. Let us know how you get on with the cider vinegar - I like the sound of the cider but---- vinegar!!

    Best wishes - Brian.

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  • Hello

    Welcome,

    Please share more

  • Hello John  and welcome from a wife whose husband is also T4, diagnosed in July 2020 and also still going strong. PCUK have some suggestions on other things which might help with the hot sweats so I have put the link here.

    https://prostatecanceruk.org/prostate-information-and-support/living-with-prostate-cancer/how-hormone-therapy-affects-you#:~:text=There%20are%20medicines%20that%20may,include%20gabapentin%2C%20venlafaxine%20and%20paroxetine.

    We live in Greece so have to deal with the heat which certainly exacerbates the hot flushes. Natural bed linen is a must for us along with a fan by the bed in the summer and windows wide open. In the winter it is layers on the bed which can be thrown off. He has sage tea rather than tablets and has found that 2 cups a day helped. I have heard that apple cider vinegar can help with hot flushes and hubby did try it but had unwelcome side effects on his bowels.

    Ask away with any questions and feel free to join in any of the conversations. We have our lighter side as well with the No Specific Topic which is currently discussing the Edinburgh tattoo, pork scratchings and battered Mars bars amongst other things.

  • Hi Johnam,

    Such wonderful reassurance to have replies so quickly. 

    I hope the radiotherapy goes well. I was offered this but opted for complete removal instead. 

    I will follow Millibob's suggestion and post my profile asap. 

    Thinking of you both.

    John 

  • Hi Millibob,

    Good to hear from you and did read your profile, I will put mine up soon. Need to get it to some sort of order, I am not the most organised of people!

    I retired from my full time job as an IT technician to work from home. Planning to fully retire next December but have been getting busier and finding it hard to slow down.

    May I ask what brand of sage tablets you are taking? Currently on H&B ones as an initial try out but not having any effect.

    John 

  • Hi, It is me, 

    Will do. Will take me a while to get it sorted out but will post when up.

    John 

  • Hi Always hope,

    Many thanks for the link which I will try later.

    Not long back from a week in Rhodes and at a moderate 25 degrees was very pleasant. Back home in sunny Scotland!!!

    Interesting about the natural linen bedsheets, I have a towel beneath bottom sheet to prevent sweat getting on mattress.

    I managed rig up a fan with a flexible ducting so I can get cool air into my side of the bed without disturbing my wife. Also the fan is fairly quiet. Not perfect but helps.

    John 

  • Hello John ( 

    Mine are H & B "Menoforce" A tad expensive and you can get them cheaper on a very well known web site named after a South American river.

    They took a couple of weeks to work but boy - did they stop it!!

    Good luck with giving up self employment - I love the money - but I am now realising life and family are more important.

    Best wishes - Brian.

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi !

    Have read all the messages and you say you’re a T4 which, correct me if I’m wrong, the cancer has penetrated to nearby tissues like rectum, bladder neck, pelvic wall or those areas and you’re only doing surgery.

    How do you treat the nearby tissues if not with radiation?

    Anyway, fantastic respons with systemic therapy Slight smile

    Best wishes - Ulf