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Reduce enzalutamide??

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User
Posted 07 Sep 2022 at 12:55

I spoke to my clinical nurse on the usual telephone call prior to picking up the new enzalutomide prescription tomorrow with a review of my most recent bloods. I mentioned feeling very fatigued and aching legs and she suggested it might be possible to consider reducing enzalutomide after 15 months on the full dosage especially a PSA and testostone have been undetectable for almost a year. She said she will ask my oncologist. What do you kind people think? Also I queried what tamusolin does and whether after radiation on my prostate (6*6gyes) 11 months ago it still had a role in reducing the need to pee as I still have to get up twice a night. She said I should ask the person who prescribed it (18 months ago) - my GP. Thoughts? Thank you.   

User
Posted 07 Sep 2022 at 23:40

Yes, tamsulosin relaxes the bladder neck muscle so you can pee faster. I think the knock on effect of peeing faster with an easier exit is that you will fully empty the bladder, so there is more empty capacity during the night to fill up.

Dave

User
Posted 07 Sep 2022 at 21:09

I don't have any experience of enzalutamide. My general philosophy on life is that everything you do does some good and some bad. Broccoli mainly good, alcohol half and half, smoking nearly all bad. So if your onco says you can cut down on Enzo, but reinstate the dose if needed, I would view that as a good thing to do. I would want to make sure I did not fall in to some bureaucratic trap, whereby Enzo was now classed as failed and I could not resume the previous dose.


Tamsulosin: I did have at the start of the PCa journey. My GP said it is a medication with very few side effects. I think you can safely experiment with cutting down your dose of that and see if it makes any difference. For me the tamsulosin was doing neither harm or good so I ended up stopping it. I still get up once a night for a pee so I might find the old packet (about four years old) and try it for a week to see if it is now more effective.


 

Dave

User
Posted 07 Sep 2022 at 23:20
I thought Tamsulosin just helped improve flow rather than effect the amount of times you pee...I'm also on Solifinacen (5 mg) which is supposed to help with an 'overactive' bladder....I still usually need to get up once per night....but that's better than the 2 or 3 x per night previously, and wanting to go 4 or 5 times in a short period of time after drinking tea in the day etc ..; I also had quite a bit of trouble starting (waiting for 2 or 3 mins for anything to happen despite the urge), which I think the Tamsulosin has definitely helped with.
User
Posted 14 Sep 2022 at 13:02
Like you I was very nervous about PSA rising when the tablets were reduced from 4 to 3, but with the option of reverting back to 4 if PSA increases later it was worth a shot at reducing the tiredness and that bit is working, now I've had the tracer injection followed by bone scan, which I'll get the results on what's happening with the cancer in about 6 weeks next time at the enza clinic, I'll keep you informed
DaveH
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User
Posted 07 Sep 2022 at 21:09

I don't have any experience of enzalutamide. My general philosophy on life is that everything you do does some good and some bad. Broccoli mainly good, alcohol half and half, smoking nearly all bad. So if your onco says you can cut down on Enzo, but reinstate the dose if needed, I would view that as a good thing to do. I would want to make sure I did not fall in to some bureaucratic trap, whereby Enzo was now classed as failed and I could not resume the previous dose.


Tamsulosin: I did have at the start of the PCa journey. My GP said it is a medication with very few side effects. I think you can safely experiment with cutting down your dose of that and see if it makes any difference. For me the tamsulosin was doing neither harm or good so I ended up stopping it. I still get up once a night for a pee so I might find the old packet (about four years old) and try it for a week to see if it is now more effective.


 

Dave

User
Posted 07 Sep 2022 at 23:20
I thought Tamsulosin just helped improve flow rather than effect the amount of times you pee...I'm also on Solifinacen (5 mg) which is supposed to help with an 'overactive' bladder....I still usually need to get up once per night....but that's better than the 2 or 3 x per night previously, and wanting to go 4 or 5 times in a short period of time after drinking tea in the day etc ..; I also had quite a bit of trouble starting (waiting for 2 or 3 mins for anything to happen despite the urge), which I think the Tamsulosin has definitely helped with.
User
Posted 07 Sep 2022 at 23:40

Yes, tamsulosin relaxes the bladder neck muscle so you can pee faster. I think the knock on effect of peeing faster with an easier exit is that you will fully empty the bladder, so there is more empty capacity during the night to fill up.

Dave

User
Posted 10 Sep 2022 at 21:03
hi I've had my enzalutamide reduced from 4 to 3 tabs after a few months now my PSA is staying low, and the feeling of tiredness has reduced and a little bit of the brain fog has cleared a little, so to me the reduction in tabs has been beneficial, hope this helps DaveH
User
Posted 11 Sep 2022 at 12:21
Thanks for that airy. Tell me - was it your decision to reduce enzalutamide. My PSA has been undetectable all year as has testosterone.
User
Posted 11 Sep 2022 at 17:01

I believe it was a joint decision after PSA falling on bi monthly appointments, started by Specialist nurse when I complained of tiredness, at first I wasn't to keen but the option came to try it for a couple months to try out the reduction, with the proviso we could go back to four tablets if it didn't work out, hope this helps, Also I'm having a bone scan tomorrow to check state of play as I have some niggles in the rib area. DaveH

Edited by member 11 Sep 2022 at 17:04  | Reason: added bone scan

User
Posted 12 Sep 2022 at 10:01
Airy - I guess that I am concerned that the PSA will rear its ugly head if I reduce dose and the extent that I have to put up with fatigue. I don't know what causes the fatigue - enzo, zoladox, stress. Have you had a new scan after PSA dropped to see what is happening with the mets? I have a talk to oncology nurse each month and the oncologist every 2 months so lets see what the next talk leads to. Cheers
User
Posted 14 Sep 2022 at 13:02
Like you I was very nervous about PSA rising when the tablets were reduced from 4 to 3, but with the option of reverting back to 4 if PSA increases later it was worth a shot at reducing the tiredness and that bit is working, now I've had the tracer injection followed by bone scan, which I'll get the results on what's happening with the cancer in about 6 weeks next time at the enza clinic, I'll keep you informed
DaveH
User
Posted 16 Nov 2022 at 12:26
Nothing changed with my blood tests but fatigue getting worse. So I may drop from 4 to 3 Xtandi quite soon. The clinical nurse said it should be ok as "all the hard work has been done".
User
Posted 06 Dec 2022 at 18:22
I have stayed on 4 per day and feel better for it. I hate uncertainty
User
Posted 10 Dec 2022 at 12:27

Hi All ,
I am on Enza myself , been on it for about 4 months


I  am suffering extreme fatique and I feel like asking to 


come of the drug 
Afternoon all 
Barry


 

User
Posted 08 Mar 2023 at 15:16
Now 2 weeks since I reduced Enza tablets from 4 to 3 which is the time my onco suggested as a trial. Delighted to report that the severe fatigue has gone and brain not as foggy. In turn, I am much more positive and I am now looking forward to going to Spain 3 times in the next 6 months (work and holidays) and France for long holiday end July to celebrate my 70 th with my youngest daughter. Fewer aches and pains so occasional paracetamol. Long may it last!
 
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