Alputamide

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Hi

just looking for a bit of advise

my brother starts Alputamide tomorrow and I was just wondering if anyone is on this . My brother is doing really good on his HT coping really well with his hot flushes brain fog etc he is keeping himself really fit doing his gym work every day and even went to buy a classic car yesterday he loves his cars and bikes . He is just a bit anxious about what to expect once he’s started on This I know everyone is different and react differently to the medication but any advise would be so appreciated and to hear of anyone who is on Alputamide .

thank you

BG

  • Hi 

    I started Apalutamide 3 weeks ago, it came with loads of information and warnings of side effects. I am 70 and recent had spinal surgery that got infected so I am on pretty heavy antibiotics as well. Before I started taking them I had a long phone call with the Cancer Pharmacy and again many warnings of remote side effects along with a 24 hour hotline.

    To be honest by now I was pretty worried about taking them. I am glad to say so far no major issues, I think I might have hot flushes occasionally, generally feel a bit tired and my bones feel a bit achy. Having said I am on so many other medications it is hard to tell what’s what.

    I try to take them at the same time each day and not too near to other tablets.

    As you said we are all different but for me Apalutamide has not caused any major issues.

     I wish your brother well and hope the meds work well for him.

    Chappy123

  • Hi Chappy

    Thank you so much for your reply it’s helped so much and I do appreciate it so much I will pass on to my brother everything you have said . I’m so sorry that after you had surgery jt got infected you have been through it . I think it’s all the stuff they have said to him etc about emergency line etc terrible side effects possibly , but I have tried to reassure him that everyone is different and not everyone gets all the side effects and your message has just confirmed that and I do thank you so much . 
    take care 

    BG

  • Good morning  . My husband wasn't on Apalutamide but he had Enzalutamide which is similar. He found that his level of fatigue was greater while on it but generally he coped with it well. The gym work will really help him to deal with the side effects but if he struggles with any of them then there is usually something which can help. By replying this brings your post to the top and maybe someone else will respond who is on Apalutamide.

  • Alwayshope

    thank you so much for replying to me it really does help and I do appreciate it

    thank you

    BG

  • Good afternoon Bg65, My Oh started Alaputamide last July.  He is doing really well apart from some hot flushes which he copes well with. Aches and pains are minimal in his joints but he does take plenty of excercise to combat the stiffness.  I would recommend investing in a blood pressure machine as I take his 3 times a week. Never any problems so far. It has brought his PSA down to below 1.  He takes the tablets the same time each day. He was on 4 tablets 60mg each day but they have condensed it into 1 tablet 240mg which is much better. Hope this helps. Best Wishes,

    Majestic

  • Thank you majestic 

    really appreciate you replying it has helped so much he has got blood pressure machine ready bit of a funny day as he has come away after delaying taking it till next week as he’s now asking the question as to why he hasn’t been put on triple therapy . He feels like he’s been not informed properly of treatment options so the nurse has said to him delay till next week and talk to the cancer nurse on Friday before you decide to start the Alputamide . He’s getting really stressed as to why triple therapy wasn’t discussed with him I don’t know the answer so hopefully the nurse will explain his treatment plan better to him . 
    Once  again thank you and I’m so pleased your OH is doing great on the Alputamide 

    thank you

    BG

  • Hello  

    Just following the thread (I do read all posts) and I wonder if your bother should be speaking to the oncologist, or is this a case of his cancer nurse specialist (CNS) just relaying messages? 

    Just a thought.

    Best wishes - Brian.

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  • Wow, I really like the idea of one tablet, guess I will continue a little longer to be really sure I am happy with them and then request that option.

     Thanks for the info.

    Chappy

  • Hi Chappy, hope you are coping well with the tablets. The first month was a bit hit and miss with the side effects, feeling tired and achey but after that hubby was fine, he is also on 3 monthly Zoladex.  We never requested the 1 tablet but just had a call to say they were changing.  This was only last week. I have to say hubby is pleased with it and less Faff. Best Wishes

    Majestic

  • Hi Brian thank you for the message 

    my brother hasn’t even been a signed a cancer nurse specialist yet they said that they would assign him one he’s still waiting . The letter he got of the oncologist him and his partner have noticed that she said she discussed options either him and when they have read it the first option is definately describing triple therapy she goes on to say or Alputamide with chemo once that stops working but his partner said triple therapy was not discussed at all that was only option she gave my brother Alputamide with chemo . Someone is going to ring him Friday to discuss this with him and if he then decides to go on Alputamide that will start next Monday he just wants to know why a triple therapy wasn’t offered to him it’s all so confusing and it’s stressing him out and he’s doing so well in himself keeping fit eating well and trying to remain possitive . As I’ve said before his oncologist was not nice at all so he’s going to see about changing his oncologist which I think he should do I thought maybe he’s got it wrong but his partner even said she was very vague when he asked her anything and couldn’t wait to get him out just yes no answers .

    once again thank you

    BG