Starting Bicalutamide and Tamoxifen

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Hi

Ive been hesitant to start these medications I am so worried about the side effect I feel absolutely fine within myself health wise,

I had them now for a week I just keep looking at the packaging everyday knowing i have to take them for 18 months at least.

I appreciate any advise or help from anyone who has been on these medications.

all the best

Nour 

  • 'Hello Incredible, sorry to hear about your worries..

    First, if you follow the course of many of the men who post here, you will only take bicalutamide for 28 days. On day 14 you should have your first hormone injection. The bicalutamide prevents the testosterone flare you would experience if you went straight into the injections.

    Most importantly, I vividly recall the relief I felt when the prostate cancer nurse told my husband that the progress of the cancer would be halted when he took his very first tablet!

    my own experiences as the wife of a man having hormone therapy are not brilliant. I have seen him struggle with the side effects. But, do you know what? I love him more than ever because he has tried so hard to fight these side effects  so that he has a chance of more years to be with me compared with the alternative of dying from prostate cancer and leaving me well before I am ready to be a widow!

    sorry this probably won’t help your own personal dilemma and, obviously, I can’t tell you what to do! But I do hope you can see that we wives find the hormone therapy hard, too, but it is infinitely better than the alternative!

    I you have a wife or partner, I suggest you talk through your fears together. This means you will hopefully get support on your hormone therapy journey and can fight and/ or work through the side effects together.

    good luck!,

  • Hi Incredible1,

    I have been on hormone therapy since mid-May.
    within a month my PSA had dropped from 189 to 5.1! I was so relieved when I heard the news from my urologist that I burst into tears when I was still on the phone, I managed to blurt out my profound gratitude to her, and for all the help I had received so far. When we said goodbye I realised that  she was in tears too! I'm sorry about that but all the medical staff need to know how much we value their work.

    It seems to me that it is almost valueless to compare the PSA level between patients. I have a "chemo-buddy" in the business unit next door to mine, we were diagnosed within weeks of each other, his PSA never went above 2.0!
    So as far as I see it a patient's PSA is very important as a trend indicator, as treatment progresses and it can be seen to fall then that is a direct analogue of the cancer activity within a patient's body.

    With my friend's PSA it dropped from 2.0 to 0.06 (from memory) and he was pleased his had dropped by 97%. I did the calculation for myself and the drop was 98%. So in my mind the value is less important than the trend, as long as it drops and stays dropped, that is a good outcome.

    As for side effects, I got fed up with pulling the quilt up and rolling it back all the time but with me that has largely eased now. I think the steroids I'm on for the chemo are adding to that a bit as well.

    I had my first hormone injection after seven days of bicalutamide, I believe the window is 5-14 days with the recommendation of 7-14 days.

    I'm off for chemo session number four tomorrow!

    Take any options they offer you, you can get through this and remember you are not alone, there are many of us travelling this road, together we can make it!

    Gotta go, need a tissue now.

    All the best Shaun.

  • Hello   A warm welcome to our little club.

    In all honesty I can't say anything more than to echo the comments from  above. The medication is given to stop the Testosterone in your body - the cancer cells feed on this - no testosterone = no cancer growth.

    Yes there are side effects, we don't get them all, they don't start right away and are all able to be controlled. I am 22 months down the HT/RT route, all side effects under control and I feel good knowing the cancer is on it's way!!

    The sooner you start - the sooner it's over. You do need to exercise to keep the fatigue at bay but with common sense you will be fine. You can read my full journey by clicking on the icon of the beach next to my name. You will see I had other issues, the side effects of HT were the least of my worries!!

    Any Questions? Just ask - you will get answers.

    Best wishes - Brian.

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  • Thank you so much it’s incredibly helpful and kind of you to share your experience and your thoughts, my wife is very supportive but nagging me about it all the time. I am 69 recently retired I feel fine never been to hospital or had any health issues. I feel so sorry for what she has to go through with me mentally and physically and that’s what scaring me most. It is a big shock 

    Today I had a PSA blood test with the idea to start the medications but I still can’t face this upheaval I can’t even bring myself to tell my children, I hope I get the courage to start my journey.

    I Wish you all the best.

    Nour

  • Hello Incredible, the first months of this journey are emotionally and physically draining for both partners. I spent the first 6 months in tears! I thought they would never stop! We all approach this differently. Your wife is nagging possibly because she is so frightened - frightened of losing you and frightened of watching you struggle frightened because this brings us wives to question our own mortality and our own capacity to cope.

    It’s ok to be frightened, sad, worried etc They are the most natural of human emotions in times of fear. Fear is what helps us to avoid unpleasant or hurtful things. So taking a tablet that you fear will hurt you doesn’t actually make sense when we only look at that one fear. But what about the fear of pain when the cancer spreads or the fear of death because you have declined the treatment? By not having the treatment now because of fear, are you pushing fear further down the line to when you are told you have left it to late?

    but what is the emotion of fear? Basically when we have any experience we are affected by it and this causes a human emotion. We then react to the emotion with a feeling. So, say you have just been told you’ve Won a million pounds. This news affects you and gives rise to emotion - happiness? Excitement? Relief? You then feel that emotion in your body and, from experience of your body reaction you can describe it as happiness etc. 

    well, it’s just the same with fear, anxiety, sadness etc. reducing fear to this helps to ‘feel the fear and do it anyway’ ( somebody wrote a book called that).

    At the age of 69 you’ve got one hell of a lot of living to do - hobbies, holidays, grandchildren perhaps. I hope you can feel the fear but take those darned tablets and take full advantage of the emotions of joy and happiness yet to come for you x

  • Hi , as millibob says to me when I still haven’t had any symptoms , they will probably arrive soon , but it’s 6 months now I been on the HT , so every day I count myself lucky I’m only nipping to toilet more regular ( so yes that’s a symptom I’m not wanting ) as we all say on here , look this bloody silent C full on and wave two fingered salute to it 

    Cheers , Jonny mac

  • Hello  

    I hope   doesn't mind me saying this be she has been through the mill with her husband who didn't want to "join the club". I have been with her on the journey with her husband for perhaps 15/18 months and I can confirm that although he didn't want to join the club - he's come out the other side - and life is almost back to the old normal. All I can say is listen to us - we have been there - done that.

    but take those darned tablets and take full advantage of the emotions of joy and happiness yet to come for you x

    Why do you think we are both here - it's to share the belief that the treatment works and it's not the end of the world. I am 68 - I had never set foot in hospital until Christmas day 2021 - when I nearly died - believe you me - that was an eye opener.

    take those darned tablets

    Come on pal - one small step towards the rest of your life.

    You can do it - for your family - your children - for us.

    I hope to hear from you tomorrow when you have started your journey.

    Best wishes - Brian.

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  • Good Morning Nour

    The question on everyone's lips is - have you?

    I hope I get the courage to start my journey.

    I hope the answer is YES - I am on my way.

    Best wishes - Brian.

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

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