Abirsterone - questions

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My husband has been on Abiraterone, with 6 monthly Decapeptyl injections, since last October. Stage 4 PCa, Gleason 4 + 3, mets to lymph nodes, bone and lung.

PSA undetectable since November. Highest recorded level 7.5 last April.

His team will not give us any idea how long this regime is likely to be effective, although they were quick enough to take him off his previous drug regime, which they said was only short-term. Does anyone have a feel for this?

For the first 5 months, the side effects were horrendous and adversely affected his quality of life. In the last four weeks, they have stopped almost completely. Does anyone know what this means? Is it working really well or has it stopped working at all?

Thank you

  • Hello  

    I was leaving your post to see if someone with more experience of Abiraterone would answer, anyway here's my twopenneth for what it's worth:

    * I would think your husband being stage 4 will be on this (or alternative medication0 lifelong.

    * He should be on regular PSA and full blood tests to keep the side effects of the two medications in check.

    * I assume he's also on a steroid to reduce the risks of high blood pressure and fluid build up.

    * It's very possible that after 5 months his body has got used to the medication and the side effects too - but you need to make his team aware of this fact.

    I hope the above helps.

    Best wishes - Brian.

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  • Hi  My husband had Abiraterone for approximately 3 years. He was due to have it for life as it’s such a good drug and many people have it for years and have no problems, apart from the usual HT - fatigue etc. His consultant said he has many men on it and he knows of someone that has been taking it from trials for at least 15 years. 
    BW ‘s first few months were a bit up and down as it was quite a lot of drugs to accept. Hot sweats were constant, he had another drug added to the mix that stopped them. (Please read my profile for his journey and drugs) Abiraterone messes with your potassium levels, so a banana a day should sort that out.  As his body settled down to the drugs he began to be able to live normally. A nap when he was tired gave him a boost and helping with the fatigue, which was a constant side effect. Coming into year three he started to accumulate more side effect from his drug load a few pointed towards the prednisone steroid as well. But his PSA hit the floor and stayed there, Inching lower and lower, even his Consultant was amazed at how low it had gone from his starting point. This is an incredible drug and we were hoping for longer in it, but BW is now on a break because of the side effects of the drug combination. I’m not sure what will happen next, but at no time did Abiraterone fail to keep his PSA low, so I’m guessing it will still be an option in the future if needed.
    I hope this information helps 

    best wishes Lorraine 

    * it’s very important to have vitamin D and Calcium added to his daily diet, so as to protect his bones. Osteoporosis is a possible side effect that you need to address. If he’s not taking it discuss at your next meeting. 

  • As a rule the PSA will tell you if Abiraterone is still working effectively, you also need a liver function test with the normal PSA and bloods. BW had one every month for the first year. Ask for one if your husband is three monthly testing if you are concerned.

    LSlight smile