Question for anyone taking Nubequa.
How long did it take to get PSA nondectable… or did it ever reach that low point?
My husband began with it & Lupron in January. PSA was 14 and 6 months later only down to 4.3
He does not have a prostate … Journey began in 2017. All clear at time of surgery. Biochemical Recurrence In 6 months after surgery.
Fighting ever since.😫
He has rare and aggressive CDK12 mutation.
Gleason 8
Decipher Score .93
Thanks!
Consider a clinical trial using Abemaciclib, Ribociclib, or Palbociclib
Thank you. I just sent this to one of his Oncologists and his response was it is an option along with Immunotherapy too.
The CDK12 mutation is a tough one! I’ve read everything I can find about it and sadly, nothing as of yet has shown much success. He is having a PSMA scan soon. As of 9 months ago he was still not Metastatic!🙏🏻 His Decipher score prediction was metastatic at 5 years.😫 We are in 6 1/2 so far.
If a “spot” is found on the scan targeted radiation will be administered, but from what I’ve read CDK12 mutations do not respond well at all to radiation.
I’m so sad and scared.
Thank you for sharing all your research and knowledge with us!
Sorry but I just started Nubeqa (no U) on 03/09/2023.....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 08/25/2023 4:53 PM DST
Thanks for the spelling correction. So, what was your PSA when you began??
P.S.A. 2.14% as of 02/20/23
<---------------- 03/09/2023 is when I began the Nubeqa.
PSA. 1.24% as of 04/03/23
Sorry, but I missed your 08/25/2023 question to me. I think (hope) my missing your question wasn't due to a brain fox. I was having "words escape me" memory loses before Nubeqa and still have them now (more? hard to say). I know it can be frustrating and nerve racking but I have a bit of an excuse. All my life I never had a good memory for names and now I'm 87 years old (I think?😃).
BTW I no longer call my wife by her name, "Ana" but call here "Dear"..... don't want to upset the apple cart there.
p.s. Tell your dear Husband not to fret.....and test him every now and then by asking him what is your wedding anniversary date. If he remembers that, then there's no need to be concerned, if not see a good attorney😒.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 10/26/2023 11:50 PM DST
It should become undetectable in 2 or 3 months normally.
28 months on Nubeqa and it took four months to get <0.02. Regular pca G9 in 2015.
What was your PSA before Nubeqa?
I have been on Nubeqa since since April '22. along with Lupron every 6 months. My lowest psa has been .6. My last 2 psa was .11 and .8 in July '23. No SIDE effects
I started taking Nubeqa 4 weeks ago, 600mg morning and evening. PSA has not yet gone down but is stable.
Everyone is different of course... I've always been a low PSA producer, so take that where it's coming from. But when we added Darolutamide to Degarelix, my PSA dropped to undetectable within a month... Again, I was not very high to begin with.
Good Luck and Best Regards
PSA dropped from 5.4 to .09 in thirty days, then to undetectable (<.01) in another 60 days. Nubeqa only, no ADT backbone.
I did the triplet therapy of chemo, Lupron, and Nubeqa. Started at PSA > 50. Six months later PSA undetectable. But, we’re all different.
I started in May 2022 and my PSA steadily declined from 34. It took until 4/23 before it got to <0.1. Here is a summary of my results with notes about treatment. (I was on Eligard and Nubeqa for about 6-7 weeks before starting chemo.)
So happy for you!!! Great results!!! Which Chemo drug did you take?? Did you also do radiation?
Yes. Because of my otherwise great health we wanted to hit it aggressively: 6 rounds of docetaxel. Then 28 rounds of radiation to prostate, pelvic regional lymph nodes and my one bone met.
My husband’s testosterone is nondectable… so, obviously that is not what is driving PSA at this point. The CDK12 mutation is the culprit! It’s rare and only in 4-7% of all cancers!😫🤦♀️
I an considering switching for Zytiga to Nubeqa. I have heard the SE's are less. Anyone have this experience?
Been on NUBEQA for 13 months. PSA is 0.40 down from 1.27 year ago.
I went from Lupron starting 7/20, then Lupron with Xtandi (could not stay on it), then Zytiga with Lupron, which held the PSA to <.01, which is what the MO wanted. Due to some longer term side effects, I asked to be put on Nubeqa (reduced side effects), which they got approval for about 1 year ago. PSA staying at <.1, but during this time I went on vacation from Lupron. Have only been off Lupron since May of this year. However, stayed on Nubeqa. Testosterone still low and PSA still <.1, but it is still early from getting off Lupron. Time will tell.
Now my lung cancer has reappeared (not associated with prostate cancer). Will have to deal with that over the next 3 months. The fun never stops!
father psa 7 right after surgery
Prep for side effects of casodex vs zytiga and prednisone
Looks great, but think Xtandi is coming to an end. 
In need of advise for my father
