Post Enzalutimide options

Hi David
Sorry to hear of your discomforts with Enzalutamide.
How long have you been on it.
I've been taking Enzalutamide for 12 months and Likewise suffer some fatigue. I also get the hot flushes every hour or so, some worse than others. I do distance running and hiking and my Onco says to carry on as its one of the best ways to minimise the SEs. I'm also pretty tight on my diet

I'm sorry I have no experience as to what comes after but hope someone can advise you
Sorry I can't be of further help.

Paul

Only four months.

I'm pretty good at motivating myself to get out and ride but simply haven't been able to.

I've been reducing the dose so that I now only take two tablets rather than four.

Been able to do half an hour or so on the turbo trainer every so often over the last two weeks, but form is appalling.

Still, it's amazing what you can do even when you feel completely wiped out.

Haven't ridden a bike outside for ages.

Really missing it.

D

Hi David
I too varied my dosages during the year but I did it with advice from my Onco.
When I started I was on abiraterone as well as Enzalutamide. After about 4 months I had major bowel issues which really prevented me going out. With approval of Onco I stopped both and eventually dropped the abbi tabs. This solved my problems and I just take Enzalutamide as well as Prostap.
Good luck with the PARP.

Paul

gosh I read your profile and am quite amazed, being diagnosed presumably with an advanced form of PCa at 37 must have been a monumental shock. It does look as though you have had a really forward thinking medical team, especially in Oncology terms. I am also assuming you have really researched and done everything you are able to in keeping the disease under some control for over 14 years.

I know very little about cycling other than I do a bit at the gym and go on a cycling holiday in the vendee region of France most summers.

From what I have picked up during my own studies, research and from the experiences of some men on this forum having chemo so early on (with what I think was the forerunner to Docetaxel) maybe got you off to a fighting start. I had never even heard of Enstramustaine so I just had a quick look to see what that is, a kind of HT chemo combi drug No? I am not sure if it is even used today.

Was your IMRT targeted at your prostate or was it used for zapping specific lymph node tumours or Mets? I ask because we have other members on here who are looking at this to control small areas of spread.

You also say that you were able to take a break from Zoladex, at your request? and what kind of levels were your blood results coming in at during all this. Again this is information that could really help another member here.

Interestingly enough I have read that once Abbi stops working moving onto Enza may not be that beneficial as they seem to work in a similar way. In some cases if Abbi is still working but producing unacceptable SEs then a move to Enza can be worthwhile and vice versa.

PARP inhibitors are going through all the approval processes, I have seen them approved for use in women with BRCA1 or BRCA2 breast cancer, Opalarib being the most frequently mentioned. Trials are ongoing in some other cancer treatments including PCa such as the TOPARP trial of which I think phase B is stil running and open for applications?. I think I am correct in saying that We do have one member on here who has been going through all the genetic profiling so that he can be accepted onto this trial. The results of phase A (TOPARP I and II) are so encouraging for those who were eligible to participate.

I am really sorry you have this horrid disease but I am also very grateful that you have joined the forum and posted.

My very best wishes

xx

Mo

D.

Also, have you actually been tested positive for BRCA or are you assuming?

Doctors think there is a good chance given response to previous treatments, but that might not prove to be the case.

Not sure I'm that bothered if I'm the youngest or not. It still has the same implications for me and my family.

I've no idea who the Wiz is. I didn't have Abi as part of anyone's trial.

I don't need advice on Abiraterone thanks, just post Enzalutimide options or even on how to cope with the side effects.

If you have some advice on that I'd love to hear it.

David.

Thank you.

David.