PSA Fluctuation and Zytiga: My dad... - Advanced Prostate...

Advanced Prostate Cancer

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PSA Fluctuation and Zytiga

cceds profile image

My dad finished 6 rounds of Taxotere in July. His PSA reached a nadir of 0.07. Repeat imaging showed vast improvement and sclerotic areas of healing to bone metastases. Since July he feels great and is quite active for an otherwise healthy 65 year old. However, by August his PSA started to creep up as follows:

August 0.10 --- September 0.22---October 0.80---

At the beginning of November he started Zytiga. 2 weeks into Zytiga his PSA was 1.26. By December it went down to 0.89. Today at his appointment it's back up to 1.22. His ALP was 42 today, so still quite low.

I'm stressed!! His MO said "don't stress, we'll check it again next month." Umm...too late! Is this med not working?! I could just cry!

I've read mixed info on flares, trends, and Zytiga causing some PSA fluctuations. Any info is greatly appreciated. Thanks

14 Replies

The emotional aspects of dealing with PSA fluctuations while on treatments can certainly be difficult sometimes. In my experience, in hindsight, I recall being a bit too elated when PSA results were going down spectacularly, and often more anxious/sad/despairing when my PSA results were turning around to go the other way.

There is a balance between giving up too early on a treatment that may still be partially working, and perhaps squeezing a little more time out of it before moving on to the next treatment(s). Many oncologists with experience in advanced metastatic prostate cancer start to depend less on PSA alone, and, instead, look at the overall picture of PSA trends, Alk Phos trends, patient symptoms, and the comparative results of imaging before moving on to another treatment. Buying a few months here, a few months there, etc., ... with longer term Quality of Life and Overall Survival time in an artful, dynamic balance.

Some types of imaging do not show significant detectable changes until PSA values are at 2.0 and above. Sometimes, PSAs can rise by several points while radiographic progression may not yet be seen on imaging.

Some oncologists (balancing the past and a possible future) might be comfortable with delaying some tests or treatment changes until PSAs have risen into the 5-10 range. There is a clinical art to it, which is hopefully tailored to the individual.

One mental "trick" that some men use once they are advanced metastatic is to start "rounding off" the results of ultra-sensitive PSA tests in their heads (and emotional hearts) to the nearest 10th, or even to go back to the regular, less sensitive PSA test. It can have a way of "resetting" the "Prostate Specific Anxiety" trigger level, or so I've heard.

Sometimes doing some other things in the meantime can be of positive value for an emotional sense of control. Perhaps using the time to do some inherited genetics testing, to rule in/out any of the rarer types of prostate cancer and possible treatment options in those cases.

As the decision point for the next treatment approaches, perhaps use some time to keep learning and to ask the doctor(s) about ALL the next available treatment options, and even get a second opinion if you may still have questions, etc.

And, of course, there are large benefits of doing/living in the Present Moment many of the things that bring the most meaning and joy in one's life. And reassessing priorities. And expressing Gratitude, Love, and Forgiveness. And sharing Compassion. Etc. While one is still relatively more healthy and less symptomatic or constrained by advanced disease or future treatments.

Every patient is different. (In my case, I was very metastatic from the start, and during the past 5 years and two months of various treatments, my PSA has been on a roller coaster from a ridiculous 5,006 to 1.0 to 95.0 to 1.2 and, most recently, 3.1. I've been alive, pain free after the first couple of weeks, and have had generally manageable side effects, so far.)

I have found benefits in going to prostate cancer and other support groups, some with my wife, and some just by myself. It has helped me to be able to tell/listen to our stories, and to share our mutual support. Some men do much better with various treatments, and some do not. Living and knowing men in these circumstances, even unto death, can be very humbling... but also deeply meaningful.

Just some thoughts,

Good Luck with the "Prostate Specific Anxiety".


SsamO profile image
SsamO in reply to ctarleton

"Prostate Specific Anxiety".... that cracked me up as I have checked my email every hour on the hour since 8:00am waiting for my latest lab result.

ctarleton profile image
ctarleton in reply to SsamO

Yeah, I laughed when I first heard it, too. Gregg57 first introduced me to the phrase. He can be such a funny guy, despite the ups and downs of our mutual advanced prostate cancers.

cceds profile image
cceds in reply to ctarleton

Wow!! I appreciate your thought provoking response. My dad is NOT an internet kind of guy. I often share responses from this site with him, so he doesn't feel like he's in the boat alone. After all, I'm simply his daughter and can't even fathom the roller coaster he's on. Sincerest thanks--Stacy

in reply to ctarleton

Thank you for sharing you thoughts and experience. My husband and I are in the throws of this. His PSA is fluctuating between 11-14 and his MO said it was normal given his circumstances. He was diagnosed in March 2018, PSA 1004, he is on Firmagon, Xgeva, and completed 6 treatments of chemo end of August. He's lost a lot of weight and is ma agi g his pain. I worry all the time.......

.89 to 1.22 is basically the same. Your Onco is right...wait until next month...if it has jumped to .2 or higher then you might have to start to worry

cceds profile image
cceds in reply to gusgold

Ok, thanks so much for the response.

j-o-h-n profile image
j-o-h-n in reply to cceds

Yep, watching your Dad's PSA numbers is challenging. I check mine on-line at the Hospital portal one eye at a time... Stress can be a mess so digress....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/15/2019 2:20 PM EST

cceds profile image
cceds in reply to j-o-h-n

Same! We’re either elated or deflated. Such highs and lows.

My dad's oncologist recommended we defer any judgement on PSA fluctuations for the first three months. Then, be prepared for occassional fluctuations afterwards. Basically, what's important is to look for the overall progression of the PSA over time. If it is trending towards, or remains stable, over 6months, for example, then there's nothing to worry.

My dad's PSA fluctuated over the first 6 months on Zytiga, but the trend was slightly downwards. He's been on Zytiga now for 3 years and 4 months.


cceds profile image
cceds in reply to curious-mind1

Thank you! I need to improve my optimism and hope for an improved result next month.

Wow! Giving me hope for my dad. Been on Xitega since Oct, PSA keeps doubling however. Think in Feb were switching again meds....

Me too - what are his numbers???

Thanks - I am the same spot. - 4.6 to 7.8 first moth on zytiga

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