Post Enzalutimide options

User

Posted 14 Jan 2016 at 09:38

I've been on this journey a long time now.
Chemo, radiotherapy, Abiraterone have all helped me keep going for almost 14 years.
Large amounts of cycling have also helped.
Recently switched to Enzalutimide.
It's working - in the sense that it's holding my PSA level steady - but the side effects are horrible.
I've gone from cycling 100 miles a week to nothing.
I'm hobbling around like an old man, have pains in most joints/muscles and breathing issues.
Fatigue is incredible.
So I'm thinking of taking a break from Enzalutimide and trying something else.
Does anyone have any suggestions?
Thanks.
D.

User

Posted 14 Jan 2016 at 11:12

Hello HighCadence and welcome to the site.

I can't help with the answer to your question but I am sure that somebody with the experience will be along to advise you.

There are specialist nurses on hand on the site if you have any queries while you wait for help and advice.

We can't control the winds - but we can adjust our sails

User

Posted 14 Jan 2016 at 12:35

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

User

Posted 14 Jan 2016 at 14:16

Originally Posted by: Online Community Member

There are specialist nurses on hand on the site if you have any queries while you wait for help and advice.

Just a note to say that our Specialist Nurses don't monitor the site on a regular basis but you can reach them during hotline hours at 0800 074 8383! They're happy to help answer your questions.

Best,

Sadie

User

Posted 14 Jan 2016 at 17:30

Thanks 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

User

Posted 14 Jan 2016 at 17:51

I'm thinking a PARP inhibitor is the obvious next step.

User

Posted 14 Jan 2016 at 18:10

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

User

Posted 14 Jan 2016 at 22:32

This disease and it's treatments are so weird. I haven't had anything like the problems you are having with Enzo, just higher BP now controlled by medication, constipation eased by laxatives, very mild flushes and I'm a bit creakier (see below). I'm able to exercise just as effectively as I did prior to Enzo. For me, Enzo has been a walk in the park.

For details of how I'm reducing my creakiness see my post in this thread:

http://community.prostatecanceruk.org/posts/t10422p7-Ever-Decreasing-Circles-part-three#post139951

For what I think comes after Enzo, see my third post in this thread:

http://community.prostatecanceruk.org/posts/t11258-Recent-update-at-oncology-clinic#post138440

User

Posted 15 Jan 2016 at 15:30

Hi David

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

User

Posted 16 Jan 2016 at 08:04

I've been very lucky - good oncologists in both the US and UK.
The chemo regimen was very experimental at the time. I think it's now been stopped because it was so hard to take (you had to be on it for 6 months) and only really worked with a small cohort ... Younger patients apparently.
Estramustaine was horrible. The first time I took it my body almost turned itself inside out trying to get rid of it.
The IMRT was at Sloan Kettering under Michael Zalefsky. Aimed st the Prostate only.
I've since had RT to one of my ribs where there is a large met. The rib is essentially constantly fractured but surprisingly only gives me problems sporadically. This will probably be the site from which they get material to profile the cancer if I move onto. PARP. The rib is painful at the moment - sharp pain when I cough - so the met is probably active/hot.
I stopped hormone treatment for about a year as my PSA had been at zero for a long time. The idea was that this would increase the period over which Zolodex would remain effective. It was a joint decision.
Thanks for the best wishes.
David.

User

Posted 16 Jan 2016 at 08:10

Thanks. Will check out the links.
D.

User

Posted 17 Jan 2016 at 14:14

My worry would be whether the NHS would ever allow you to have it in the future if you stop now. CCGs can be very precious with their funding agreements.

It would be interesting to see more detail in your profile of when and where you had some of the treatments as it reads as if you had a couple before they even existed! Which country, not which hospital, as one of the rules of this forum is not to identify individual medical professionals or hospitals unless we are quoting research/published data etc.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Jan 2016 at 14:22

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Jan 2016 at 14:28

Hi,
Chemo devised in the US (Memorial Sloan Kettering) delivered in the UK (UCH).
RT in the US (MSKCC).
Everything else in the UK.
Lucky to have had really good private cover through various employers.
Hope that helps.
David.

User

Posted 17 Jan 2016 at 14:29

Nope. Haven't tested for it.
Doctors think there is a good chance given response to previous treatments, but that might not prove to be the case.

User

Posted 17 Jan 2016 at 15:04

I am really surprised that they haven't done the tests already. You wouldn't be the youngest man diagnosed in the UK but I think you could be the youngest diagnosed with advanced PCa. Presumably you were under the Wiz when you had Abiraterone as part of her trial - did you ever come across Mark Keneally? He was a member here and described his journey on the abby tabby trial in great detail; you will find his threads under member name Spurspark

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Jan 2016 at 15:26

Well, I guess we are all on our own paths, making decisions and getting tests as we go along at times that are right for us and our oncologists.
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.

User

Posted 17 Jan 2016 at 16:25

Sorry, I meant his experience on Enzo not abby! You can also find other men's experiences of Enzo by searching MDV3100 on here - there are quite a few who have been there or are in the middle of it now

Out of interest, are you of Black African / African Caribbean descent?

Edited by member 17 Jan 2016 at 16:29 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Jan 2016 at 16:27

Great, I'll take a look.
Thank you.
David.

User

Posted 18 Jan 2016 at 07:13

I'm not of black African/African Caribbean descent.

Notification

Join the online community now.