Possible Enzalutamide treatment

Hi Lynne

Thanks, I know that's why I'm a bit concerned about it. I'll wait until the scans are done before I decide to finish up work. 

Cheers

I’m so sorry to hear of the predicament you are in in just this timescale. You’ve basically had everything but the kitchen sink. I simply don’t understand this cancer and wish I knew more so that my choices were well informed. During the same time scale I’ve simply had RP and fully recovered from it and yet refused all other treatment. Yes my psa is mental but each and every six month scan ( PET , CT , Bone ) has shown nothing. I’ve just had repeat scans last week and get results on 15 th Nov. I’m not a fool but sometimes feel like it’s all been a huge mistake.

Of course it hasn’t been I’m sure , and I’m in for awful news sometime soon , but I’m glad I’ve stuck to my guns.

I hope you get your trial and very best wishes

Just a wee update, really disappointed today as just been told that enzalutamide has now stopped working after just 10 months. PSA has risen to 2.5 and going up by 1 every 8 weeks. CT scan is being arranged to determine what the next course of action will be.

Been told that I may not be here next year, and if I am then unlikely to be here in 3 years. Totally down, I knew this was coming but hoped for a few more years before it came to this. Oncologist is talking about more chemo or Radium 223, but as she says this is to ease the pain and not a cure.

I've been so upbeat but now t my head is in a dark place. Anyway stay safe all and good luck. 

Sandy

Hi Dave,

All the best for the future. Hopefully you too will get something that can kick this s***, albeit for another few years. 

Onwards and upwards. 

Sandy

Thanks Chris, 

Long time since we exchanged anything, hope your keeping safe. 

It is a VERY unpredictable disease as my Onco said.

On the flip side , I too have just passed 5yrs post op. I refused RT outright as they said not curative and then went on a journey to find any spread. I’ve always had huge psa but they never used to find anything , so I’ve refused all treatment. So I’ve had 5 yrs of top QOL ( except the mental stress ) and ZERO interventions. Fair enough my psa is over 500 now and I’ve been getting back pain. Scans in 2 weeks and then the truth. Maybe time to behave myself.

Best wishes

Hi Sanders, devastating news - I am so sorry. Looking back, the enza has only actually worked for 8 months which is lower than average for that drug but better than the 50% of men that it doesn't work for at all. If you coped well with the chemo last time, it may be well worth trying again - either docetaxel for a second time or cabazitaxel. You can always stop if you feel it is impacting on your quality of life too much. You could also ask whether it is worth trying Stilboestrol; it is an old fashioned oestrogen drug but works well for some men where more modern treatments have failed. Your cancer has not behaved in the way that prostate cancer normally does (spread to the face is very rare) so perhaps a 'not normal' treatment is needed.

Hi Sunny-Jane, 

Your right that everyone is completely different with regards treatment. I was on Zoladex for almost 3 years with no problems and PSA undetectable. It then suddenly started to rise hence the addition of enzalutamide.

Hope your OH gets the treatment that suits him best. Fingers crossed for him. Take care. 

Sandy

Hi Lyn

Thanks for the info Re treatment, I will keep it in mind for my next visit. The last bone scan identified hot spots in my spine, pelvic area, rib cage and cheek bone. When I met my consultant yesterday she had her doubts about the cheek bone. Funny that I don't have any real pain apart from some wee niggles in my joints or after a round of golf. 

She did tell me not to worry too much about the PSA as the hot spots on the last scan were not large clusters, think she is more concerned about soft tissue being infected. Just devastated that with Zoladex and enzalutamide combined the cancer seems to be sticking 2 fingers up to them. 

Hope your are keeping well and safe. 

Thanks.

Sandy

Hi all, 

Latest scan showing a load of activity in pelvic area. Had a dose of radiotherapy and it floored me for a week, felt crap all week. 

Met with oncologist last Friday and he took me off Enzalutamide as it ain't working anymore, only lasted about 8 months. 

PSA now 4.8, was 0.8 at turn of the year. Anyway been put forward for Radium 223 treatment, 6 sessions. Just feel that treatments are now coming to an end but oncologist is confident that I will benefit from it. He also said that there was more treatments left but it doesn't feel like it.

I've read up on Radium 223 and it seems a good treatment with little side effects, so here goes. I will have a wee read of others experiences tomorrow. 

Stay safe all. 

Hi all, 

Off Enzalutamide now as it ain't working anymore. Started Radium 223 last week, 6 sessions over 6 months. So far side effects have been bearable with slight increase of pain, what is to be expected.

PSA now at 5.4, but told PSA is no longer important as the Radium seems to cause your PSA to rise. 

Let's see where this journey takes me now. Still hoping to get away for new year, insurance company are willing to insure which was a surprise. Hopefully side effects will still be slight. Cannot go away for 7 days after injection but OK for after that as long as I feel OK.

Onwards and upwards. 

Sandy.