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Journey with Enzalutamide

Posted 26 Jan 2019 at 19:25

My husband was diagnosed almost 2 years ago PSA 1303 extensive bone mets and in lymph nodes. Started HT and then early Chemo. That worked until Chemo finished PSA down to 1.1 but started to rise straight afterwards doubling in about 4 weeks. Then went on a trial with Abiraterone (and a trial drug or placebo) Was working well for 4 months and then had severe toxic liver (ALT went up to over a thousand) so had to come off trial.

Started Enzalutamide end of Nov 2018. This was only an option as the Abi had been part of a trial and not paid for by NHS, also my husband was responding well to the drug as shown by PSA and scans and it was a toxic drug reaction that he had to come off it. In the first 3 weeks PSA down from 11 to 3.1. This is lower than with 4 months of Abi. Should find out last PSA soon. Doesn't seem to have any real noticeable side effects. Well when asked about fatigue and tiredness my husband said yes sometimes. I suggested he put it in context when he had walked over 10 miles in a day he felt tired the next day, I didn't think that was fatigue due to the drug, Four or five miles was fine in a day. He has now been given pills for 2 months but to have a blood test in 4 weeks which they will phone him with the results. Also he has a CT scan booked which we understand was asked for by the trials team which we think may tell us a bit more. This will be well over 2 months into the drug. I think 2 months is about the longest we've been between appointments for a long time.

How long this for we don't know but it seems our best hope for now and hopefully a long time.

Posted 27 Jan 2019 at 08:17

Not sure what the question is but i was on Enza for a year and daily tiredness, severe fatigue always kicked in at around 3pm.

Nine years since DX.

I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.

Posted 27 Jan 2019 at 09:37

Best of luck with the Enzalutamide, hope it keeps working for OH.Thanks for the update.

Keep up the walking , i’m sure its good for the mind as well as the body.





Posted 27 Jan 2019 at 09:45

By the way , you dont need a question to post , sometimes its good to write stuff down and share with people who understand.


Posted 27 Jan 2019 at 10:12

I’m interested in how your man is doing too as mine has just started on Enza, so far not great but only less than a week so not sure what to expect. John got liver toxicity with bicalutimide so is being watched closely though I'm told abi is worse for that hence choosing enza. 

Will ne watchign out for updates, good luck

love Devonmaid xx

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