Posted 1/14/2020 12:02 AM (GMT -7)
Am castrate resistant after lupron only, no chemo or other rx.
(diag 2010, imrt 2011 with 6 mos Lupron; 2015 psa starts rising; 2017 axumin shows spread to many lymph nodes; 2017 Lupron 1 year, 2018 adt vacation; 2019 axumin again finds more spread and some possible bone spread; psa to 6; started Lupron again; after 3 mos Lupron stopped working, now CR, dr ok with either zytiga or xtandi
Dr. wants me to choose between zytiga/prednisone or xtandi
(not looking at darolutamide at this time)
I have delayed this decision for 3 months, reading, studying so much
info and have become frozen even though psa keeps going up since lupron
not working - its now around 7, doubling quickly.
But I need to make the decision now between the two; dr does not suggest
chemo at this time. Will continue on the lupron.
(in the abbreviations below - s/e means side effect; z means zytiga, p means
prednisone, x means xtandi)
Have read many postings and articles about these 2 rx z/p and x; the side effects
patients have experienced, which one might be better to start with
and so on.
There is an excellent thread on this forum called Zytiga our collected
experiences, but since its a bit older, was suggested that it would
be ok to ask a few targeted questions in a new post - to ask for your
own experiences or of those you know of or other feedback.
And am focused on this related to those who are castrate resistant.
I realize many folks who are castrate resistant might be taking
bone medications besides the lupron in addition to the z/p or x.
These are some questions I put together after lots of reading
and realize every patient is different as to disease progression and/or
side effects and pre-existing issue
Thus if you have an experience of your own or others you know as to any
of these questions, please comment if you have time.
***** The questions
Realize its a long list but am needing to make my decision soon.
1. Which of z/p or x did you find to work best and why ?
(ie keeping psa down longer, less side effects, etc)
2. What side effects did you experience with z/p and or x ?
(I realize it could be hard to determine if s/e from lupron or z/p or x)
what were the worst or most dangerous ones you had ?
3. did you have to dose reduce z/p or x ? if so did it still work to control pca ?
4. did you have to ever stop it due to s/e ? if so, which ones ?
(like liver or carido issues for z, just for example)
and were you able to go back on it if the s/e improved ?
5. how long did z/p or x work for you ?
6. if/when you had to stop z/p or x, either from s/e or that it no longer worked,
and you started the other, did the other one help at all or for a much
shorter time than the first one ?
7. if you took both of z/p and x, which one had the worst side effects ?
(or for example, that even with needing to take p with z, and that p itself
can have a wide range of s/e - that those who chose zytiga first felt
it could be more effective than xtandi ?
8. which one did you start with, if you had a choice of the two ?
9. If you took/take zytiga, did you have any specific and bothersome side effects from prednisone ?
I realize it can be hard to know if a given s/e is from lupron, z with p
or x and/or bone medications.
prednisone has a big list of possible side effects and I hope drs track
labs or other things related to its possible s/e.
For example have read that some on zytiga have extreme mood swings,
often very negative, sometimes called 'roid rage - even from the
relatively small amt of p taken.
10. Did anyone find the added bone loss or muscle wasting from z/p or x
were more than it was with just lupron and/or the spread of pca to the bones ?
11. Did you start with an initial lower dose of your zytiga/pred or xtandi to see if any bad initial
s/e would happen even with those lower starting doses ?
however I realize even if no s/e from partial dose, I know that is no
guarantee that full dosage would not cause s/e
12. Same question as #11 for xtandi
13. prednisone dose - were any of you allowed by dr to take just 5mg a day vs
the usual 10 mg (5mg twice a day) ?
14. Taking zytiga with food, as per some studies and protocols
---> Did you or those you know of do that and still found the psa still being controlled ?
---> If you had taken it originally without food at the usual dose,
when you lowered the dose and took it with food,
did some of the s/e become less ?
=== Thanks again for any responses or comments to my questions; they are all much appreciated.
Sorry for so many questions but finally I need to make a decision; have
waited too long already I know.