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Abi / Enz query

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User
Posted 10 Feb 2018 at 19:43
If Dad’s chemo is definitely off, can I ‘request’ Abiraterone or Enzalutimide? Are these drugs readily available nowadays and is this worth pursuing? What is the difference between the two? Any advice gratefully received as always x
User
Posted 10 Feb 2018 at 21:16
Hi Pen
You must be at your wits end right now, I am surprised you’ve not been offered one or the other of them. Enzalutomide wirked well for a few months for my hubby but has now been withdrawn as his PSA has shot up to 97. If your dad has no soft tissue mets there’s also radium 223 which is what my hub will hopefully be having now. I would have thought you still had a few options left. I know how frustrated you must feel, I can’t find anyone on here that has had radium 223. I hope you soon get some answers, I always ask loads of questions when we see the oncologist and I take a note book, I’m probably a pain in the bum but you just want the best for the person you love don’t you.

Keep strong Pen x
User
Posted 12 Feb 2018 at 00:48

Members on here want to be helpful and supportive but we don’t have all the information about your dad’s case and I think you need to be careful not to build your hopes up or create unrealistic expectations. When you posted that dad had been given 3 months lo live, I suggested that you try to get more information from the consultant to understand why dad was not being offered these treatments - did you manage to do that?

There must be a reason for it - the onco wouldn’t just forget about treatment options that he probably prescribes every day to other people. Rather than keep looking online and finding treatments that you then wonder about asking for for dad, it would be better to ask the consultant, specialist nurse, GP or MacMillan worker to explain why treatment was stopped and he was moved into palliative care.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2018 at 00:50

Pretty lady, there are lots of men on here that have had or are still having R223 - have you tried the search function? It isn’t the most intuitive search in the world but it does work eventually.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2018 at 20:05
Hi Lyn
I keep trying searches I found a couple of old posts from 2015 of people about to try it but I haven’t yet managed to find an up to date post, I keep searching.
User
Posted 12 Feb 2018 at 20:26

There is something wrong with the way you are ngaging with the search function - perhaps weird filters on your device?

Look up the following members:-
Mollylou
Eleanor
Lost
GlenT
Spurspark
Trevor-Boothe
Quantum

Also search under Xofigo which some members have posted undewr rather than R223

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2018 at 21:39
Hi Lyn
Thank you for giving those names, I looked them all up but sadly most seem to have passed away so it hasn’t filled me with much confidence. I didn’t get a great deal if information from the various conversations or profiles about radium 223 and what it was like to have it. I used to think knowledge was power but I’m starting to think it’s best to just go with your medical team, trust what they say and maybe not keep searching on this forum for answers that aren’t there.
I’ve just felt very alone in the journey and wanted to reach out and learn as much as possible but this is a disease that has so many twists and turns and variations.

Thank you Lyn and best wishes to you.
User
Posted 12 Feb 2018 at 22:11

Spurspark wrote a detailed thread of the side effects of Radium 223 as he was on the first trial. I will try to find it for you when I am at home. It works only on the bone mets and by nature is given to people who are running out of options but some have felt that it made a massive difference to their quality of life. PSA tends not to reduce on radium 223.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Feb 2018 at 22:25
Thanks Lyn that would be great. I think I’m not too sure how to get the best out of the forum in terms of searching for things. I would really appreciate it if you are able to find it.
Kind regards
 
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