Enzalutamide

Hi Paul I read your bio with interest and sorry you’re having such a terrible time. 
Mine started with peeing problems during Covid but then severe back pain and leg pain from May 2021. I also went to a chiropractor and osteopath to deal with the pain never thinking for a moment it might be cancer. 
In July my PSA was 413 and it is now around 14 prior to starting Enzalutamide. I’m managing the side effects with regular exercise. I’m 65 so hopefully you have youth and a loving family to fight this thing and win.

Hi Steve  I faced the same choice Chemo or Enzalutamide with the still 3 monthly Injection.

I am now 3 months in taking Enzalutamide My PSA at Diagnosis was 168 its is now 0.04 so that's going in the right direction 

As I have Advanced PC I have Bone Mets, Spinal mets in the Lymph node and Left Adrenal mets. I had a dose of Radiotherapy to ease the pain in the hips and spine and I am taking Pain killers 4 times a day with the occasional Morphine if it gets too bad I have only ever used this on a couple of times when I over did it like walking too far like I used to, but while I have been taking Enzalutamide I have the usual Hot flushes I also sweat doing simple tasks like putting my socks on  and at night I sweat like a race horse after the National, the tiredness I have found that if I keep my self busy I do not feel it much I am a keen fisherman so I find making my own rigs very therapeutic and takes my mind of things for a little while. 

On the good side my body is taking to the treatment well and it is keeping the PC in check so I think I made the right choice 

But remember we are all different and the side effects may be different for you

I wish you all the best and hope it works for you as it has with me 

Regards  Chris

Thank you sussex20, it's been a very difficult time for my family and me but got to stay positive. I am glad to hear you are responding well on the enzulatimide like me, long may it continue. Take care and best of luck to you

Hi Steve,

I’m on Enzalutamide (since August) and also Decapeptyl. Side effects have been limited to hot sweats and tiredness. The oncology recommended an early start on Enzal to clobber the cancer before it spread too far ( I’m Gleason 9, Metastisised to bones) I recently developed very sore shoulders but unsure if that is the cancer. Next MDT review is in a couple of weeks so we’ll see how it is working….then I will post results.

Best of luck

I was diagnosed early September, Gleason 9, PSA was 179 now 41. So improved.

I’m taking Zytiga limited side effects noticeable tired plus hot sweats very lethargic. Has gone to my bones quite extensively so it’s treatment not cure, fingers crossed. Don’t want to leave my lovely family to soon.

Ray

I hope everybody is still doing well on Enzalutamide. For me, it has made a huge difference. After nearly 3 months my last PSA check was 0.28. Also little dark brown skin moles seem to be drying up and most importantly my bone pain has gone. I also slept for a full 6 hours last night without getting up, which is unprecedented.

Yes I'm lethargic in the morning but after a couple of coffees I can get going. Hot flushes are a necessary evil I guess but another thing to watch as we approach the holidays is cheese. Best avoided in my experience, in fact diet is really important now.

I'm also hoping the government doesn't shut down gyms. Regular exercise and some light weights help to combat the side effects of this drug.   

Wishing everyone a happy Christmas.    

Hi Sussex20

Glad to hear its working for you, my last blood test last week was a great result 0.01 can't grumble at that

However my bone pain has returned so I have had a nuclear bone scan and MRI they want to see what is going on I am still hopeful but must wait till xmas and new year break is over before I know anything

I wish you all the very best have a good Christmas and New Year

Stay safe 

Chris

Hi 

I have just been reading your posts on enzaltumide and it has been most reassuring.  My husband starts taking enzaltumide next week, after bicaltumide has stopped working.  He has extensive bone mets ins his spine, ribs and shoulder.  He has been suffering from pain in his groin and making walking quite painful.  Zomorph, oromorph and pain killers sometimes don't touch the pain.  Hoping enzaltumide gives him a better quality of life.

Hi pippiloo

I have been on enzalutamide for well over a year now, the one thing I found when I first took it was, taking four tablets a day zonked me out, now everyone is different and I’m on other meds as well, But rather than come off them after a talk with the chief oncologist he dropped me to two tablets and build up took about seven eight weeks but got there, still have the odd moment but that’s the nature of the beast.

Pain killers can sometimes cause problems with the lower regions, when I was on morphine I couldn’t go, then co codormol for pain simuler to your husbands it blocks me. Now I can get horrific bowel pain if I don’t get to the toilet quick enough.

Quality of life for us is taking the good days and fighting the bad ones, so hope your husband does well on the new meds take care be positive.

Stay safe

Joe

Hi  Jo thank you so much for your reply.  I find your comments really helpful and have passed them on to my husband.  Its like being on a roller coaster but I always try and make my husband look on the positive side and make the most of each day.  Time together is so precious.