My first PSA test I ever had was at 49 years old, it was 4.0. My doc didn't choose to refer me, didn't even mention it. My second was 2 years later and it was 7.8. Doc referred me, but I blew it off. NOTE: 49 is way too young for that high of a PSA.

My third was another 2 years later and it was 20.6. Wow, things got serious. Went to the Uro, he stuck the wand of pain up my backside and told me later that I had prostate cancer and my Gleason was 8.

So, At this point I'm not all that worried because it's just prostate cancer. You know the good cancer. What the heck did I know, time is a cruel teacher sometimes.

Anyway I had my shot of Firmagon, then had my Robotic RP. Dang, I'm a Gleason 9 now, it's invaded every portion of my prostate and 75% or more and even escaped it. Everything positive.

Shiotsoo!!!!

But my Uro says he's still thinking cure, I'm hopeful. Anyway, I go on Lupron for 2 years, feeling like the woman I ain't.

Post-op 18 months(June 2015) I had radiation to the pelvic region including lymph nodes. My RadOnc tells me, "You know if this don't get it, it's incurable."

Feeling depressed.....

But that was then, I had my last Lupron shot in Feb 2016 and I'm still undetectable in November 2016. I'm feeling pretty good, my marriage is better than ever, I have a great job. Just living for the day, appreciating everyone and everything.

What have I learned. EVERY guy is different. Do your homework, ask questions, make your own decisions about treatment and don't let the beast scare you, live life and love everyone even those you don't like. Oh, and don't take any BS from anyone, life is short live it to the fullest!!

In early 2016 I got to take a Lupron vacation, an RP, RT and 2 years of HT was the standard, all as a big ZERO.

Anyways, after 15 months of freedom my PSA showed a rise. It came up at 0.18, I changed to a MedOnc at KU Med. He has done two more PSA tests, each rising significantly. 0.30 and 0.71.

I will be having scans done this week to see if there are any mets. :(

After that, I'll restart the Lupron and doc says either Zytiga or Xtandi.

I have been very depressed these last 4 months. Yes, it has gone from 0.18 to 0.71 in 4 months. That's a doubling time of about 6-7 weeks. I know I'm not dying tomorrow or this year. But now that the beast is back, I know my time is limited.

Just a note: my post surgical examination showed that I am a Gleason 9, all aspects of the prostatectomy came out positive except for bladder neck invasion. So, I am stage 4, pT3b

Last you heard from me I was about to get some more scans.

Well, I did.

The bone scan was clear, but the CT showed a small spot on my right lung.

Too small to biopsy, so I went on 30 days of casodex and started 3 month lupron shots.

My PSA went from 0.71 to 0.15 to 0.07. I get another PSA test next week and am hopeful it's stable or lower.

May God bless each of you in your journey.

Last time I was here I was about to have another test and shot. The story is short.

They switched me to Eligard every 3 months. Hurt like a mother, stung like a hornet for about 10 minutes, then the pain stayed with me for about an hour.

My PSA was still 0.07, but that was in February.

Three months later, another f'ing Eligard shot (I've got to go back to Lupron), but my PSA went up a notch to 0.08. Just noise, right?

Anyway, this is August 1st 2018, my next PSA and shot is later this month on the 22nd. I'll try to remember to check in afterwards.

If you have questions, please feel free to contact me. May the blessings of the Lord be with all of you!

Well, I remembered to come back and update!! So, my PSA is stable at 0.08. It's been that way the last four PSA tests. My Oncologist said that I get to take a vacation from hormone therapy, yah hoo!!!!! He also laid out the future treatment plan. First, when my PSA starts going up we will wait until it's between 1.0 and 2.0 before we start back on HT. This is so we can possibly get better images so we can see where it's at. Once back on HT, all will be as usual, no big deal there. BTW I expect my PSA to start rising in about 5-6 months and it will rise very quickly after that. My previous vacation PSA went from Undetectable to 0.18 to 0.18 to 0.30 to 0.71 in 4 months. When HT fails and I become castrate resistant (and it will eventually, it always does folks), he will put me either on Erleada or Xtandi. That is unless I have mets that are imageable. :( Then I will either go on Zytiga or Chemo.

I'm actually very happy, that's because I've reached nadir. Everything from here on out will be based on that number. If any one is wondering, I'm not scared. I don't want to die but I know where I'm going when I do. I have faith that I'll be in the arms of Jesus Christ. If you would like to talk about this or your PCa journey, please email me. May God Bless each and everyone of you!!

I'm just checking in with an update.

I had my PSA test done mid November 2018, it went up slightly. It went from 0.08 to 0.09. Oncologist says we'll just keep following it.

My PSA will start rising, we just don't know when. Last time it took 12 months for it to take off again. But I'd been on Lupron for 30 months or so. This time we stopped Lupron/Eligard after 12 months. It's now been 6-1/2 months since we stopped. So I really expect it to show an upswing in February.

The next test is in February 2019, I'll try and check back in then.

May God bless all of you!

By my calculations I've been on an ADT vacation for nine months now. My PSA is creeping back up. Nine months ago it was 0.08, three months ago it was 0.09, today 0.10. That's pretty great, although I am not under any illusions about it. It is low because my testosterone has not recovered yet. Once it does, PSA will start rising rather quickly. But for now, crack open the bubbly, pop a can of beer, take a shot your favorite bourbon because I'm not dead yet.

And when it does the plan is to allow it to get to just above 1.0 and then have an Axumin PET scan.

Take care brothers! May the good Lord bless and keep you!

I haven't had any tests or anything, just checking in.

The further along into this journey I go the harder it is. I have another 36 days until my next test, and it seems like ten years. I have been getting so depressed over the waiting. I want it now, not really, but that's how I feel sometimes.

I'm not hoping for the disease to take its next step, but I live in fear that it's coming. I'll be 60 next month, I'm the youngest of 6 kids and I'm in the worst health of us all.

I guess that's all, I'll do my best to check in next month. I'm fully expecting a rise both in PSA and testosterone. I've been feeling a bit more agitated, that has been a sign that the T is going up.

Take care and may God bless each and every one of you!

I am on intermittent ADT, currently on ADT vacation. But that will soon end, as my PSA jumped from 0.10 to 0.62 in just four months. The beat goes on, I hate Lupron, but I hate this cancer worse.

I meet with my oncologist tommorrow, if anything significant happens I'll update. If not, see you next time.

Peace my Brothers.

So this will be a two part update. This one and one next week.

I am scheduled for an Axumin PET scan tommorrow 7/2/19.

In the over 5 1/2 years that I've been diagnosed with PCa, I've never been as scared as I am now.

All my previous scans bone and ct were really never sensitive enough to see anything, although it was clear because of my rising PSA that I still have PCa.

This scan tomorrow is different, Axumin scans are very good at seeing mets at my PSA level. So, I will get to see for the first time where the beast is living, and how widely it's occupying my body. I will likely be prescribed some additional treatment, but I won't know until my appt with my MO next week. So, until then, keep strong brothers, keep strong and keep the Faith!

Love you all!

Well, I got my PET scan results back and I'm back on ADT (Lupron)

My PET shows a met on L3 vertebrae and a probable positive lymph node in the iliac region, right side.

I'll have a followup MRI to confirm that the met isn't a false positive.

Assuming it isn't, then I'll get radiation to my lower back.

Nothing for the lymph node though, as I've had radiation to the pelvic lymph nodes before.

I got my shot in the butt today, not too bad. I go back in 5 weeks (Aug 12th) and after the MRI.

See ya next month and may God bless you all!!

A quick update or refresh of stuff that I forgot to mention.

Because of the met to my spine, I no longer will have the option of intermittent ADT.

I'll have an MRI next week to confirm the met to my back.

And assuming it's confirmed, I'll get radiation to the L3 vertebrae.

I forgot to update last month.

I had an MRI to confirm the AXUMIN PET scan. Well, it didn't. So my Onco says the Axumin scan was a false positive. So, I'm back on intermittent ADT. I took Casodex for a month concurently with Lupron.

Back up a step, I'm glad but wondering if that was the right call. Anyways, in early October I'll have another PSA test. The last time it was checked it was 1.4

Just a quick update.

I went in a week early for my PSA because I was anxious about it.

Good news, back down to 0.09 from 1.40, which is basically nadir, 0.08, close enough for me.

I have some other blood tests results to come, I'll let you know if anything is not where it should be.

Received my 3 month PSA results.

For the first time while on ADT my PSA jumped up.

It went from 0.09 to 0.19. I know that's not much but considering my history, it's likely a sign that I am now castrate resistant.

I will have two more PSA tests, spaced a month or so apart. If there is a rise then I am CR. The two new tests will also determine my PSADT while on ADT. My previous PSADT while NOT on ADT is 6 weeks.

Continued rise means I'll have a CT and bone scans performed in about two months.
My base NEW treatment will most likely be Xtandi.

The truth is, I'm depressed, I've read where average time on Xtandi is 17 months. So, maybe my countdown clock has started, maybe not.

Good luck and may God bless each and every one of you!

Well, I am a bit confused. My nadir is 0.09. Last month I had a rise to 0.19, but now it's down a bit at 0.17.

I have an Onco appt this Monday, maybe he can explain.

My PSA has really been pretty steady and I thought my nadir value had been established.

Don't get me wrong, I am thrilled it went down, but what's stopping it from rising? My treatment is still Lupron, same dose every time.

Well, talked to Onco. He said the reason my PSA leveled off MIGHT be because the lab started using new equipment.

That's right new equipment, which means these new values are apparently my old values just higher.....

Okay, so basically my new nadir is now 0.17. The new equipment is better at reading samples.

I still don't trust them, but I'll have tests once a month for a few months just to be sure.

Take care and I love you guys!!

So, since last I have had two PSA tests, one in February and one in March.

PSA went down to 0.16 both times, so maybe I now have a new nadir.

Not much to say except have a blessed day and may the Good Lord be with you all!

So, I just went to my Oncologist after testing PSA and T-level.
I haven't had any Lupron for 8 months. My PSA has tripled from 0.16 to 0.49, and my T has gone from about 9 to 18.8, so I'm still at castration level.

He wants me to go back in in 6 weeks to be retested for both and probably schedule scans, CT and bone.

I'm not totally sure what he's thinking. But it has to do with determing if I have become castrate resistent. I hope he understands that both will go up, and won't determine anything.

If he decides I'm castrate resistant then I'll start xtandi in addition to lupron. But at these levels the scans probably won't show anything.

Oh well................

Take care all and may God bless each and every one of you!

Today my PSA went up to 1.46 since November (0.49).

T level went from 18.8 to 36.8, so still castrate level.

I'll see Onco on Friday and he's already said I'll restart Lupron and start new with Xtandi, plus get scans.

Happy freaking new year.

Take care, love y'all!

Last I updated I was about to go back on Lupron and had a promise of Xtandi.
I did start Lupron, but no Xtandi.
I changed Oncologists, he is at University of KS Health Systems
I have had two appointments spaced 6 weeks apart.
The first my PSA dropped to 1.01, fo me that was pretty small drop considering previous history.
The next test 6 weeks later, it went down to 0.85. One week ago I changed from Lupron to Orgovyx. It's a daily pill. It does the same thing as Lupron but has fewer cardiac issues.

Considering that my PSA hasn't dropped back down to under 0.2 makes us think that I've reached castrate resistance. Since my January appt, my T-level is less than 0.1. IOWs it's undetectable.

I'll have another appt in 5 weeks to see if I'm stabilized. We won't be changing or adding meds until PSA gets to 2.0 or above. At which point we'll see about additional scans.

I'll try to be on time next time!

May God bless each and every one of you!

I got my quarterly PSA results back Tuesday Aug 24th.
I guess it's good news, no real change, from 0.75 to 0.74.
I was really hoping it would go back to the 0.17 range.
This was my previous nadir, I guess I have a new nadir, oh well life goes on.
Orgovyx is still working, my T is at 12, yeah 12.
I'd really like to know what my PCa is doing.
Coming off of ADT vacations, my nadir has bumped up.
First from <0.1 to 0.17 , now from 0.17 to 0.74.
Any ideas??
So we will keep toiling on until the next test in November.
I honestly can't remember if I had mentioned that two tests ago I was put on Orgovyx.
A daily tablet, no more shots, woo hoo!!

May God bless each of you!

I had my PSA test this last Friday and I'm a bit bummed about it.

It went up from 0.74 to 0.95. I know that doesn't sound like much, but it's the first time it's done that while on ADT.

I've been on ADT for about 8 years, and it appewars I have finally reached castrate resistance.

I know we'll have to do another test to confirm, but let's face it, I've been one lucky BLESSED man.

Castrate resistance after 8 years is unusual, it's typically about 3 years.

Now if I can just beat the 2 1/2 to 3 years survival expectancy.

I see my Onco a week from today 11/22/21.

BTW my 8 year aniversary for my surgery was yesterday.

Have a blessed day guys.

Although not very high, my PSA has gone up.
It went from 0.95 to 1.23 over since November 2021.
Having no prostate, that's not good.
Doubling rate of 4.3 months.
I am scheduled for a Pylarify scan on the 28th.
Depending on results my treatment will change.
All localized mets: radiation
No mets, one of those second line ADT drugs for non-metastatic PCa
Wide spread mets, one of those second line ADT drugs for metastatic PCa

Love y'all!

May the Good LOrd keep you in the palm of His hand!

Well, I received my pylarify PET scan results yesterday 2/14/22.

No mets to bone or organs.

But I do have extensive lymph node mets.

From my neck to my lower abdomen.

I'll start Xtandi in a couple weeks.

My Onco says that 2nd tier ADT generally averages 8-10 months of being effective.
The next treatment after Xtandi will either be Zytiga or chemo which will be effective for 6-8 months.
I'll get another scan of some sort in about 6 months to determine a future treatment path.
He also said 3-5 years, he didn't expound, but I'm pretty sure what he was meaning.

It ain't over till it's over.

May God bless each and every one of you!

Well, cool!!

I started Xtandi on 2/28/22, my last PSA test before this was on 1/18/22, and it was 1.23.

My Oncologist said to be patient as Xtandi takes a few months to start working.

Well, 17 days after starting Xtandi, PSA dropped dramatically to 0.18.

I'll see the Onco in a month and also get another PSA test.

It will be interesting to see how surprised he is. And also to see if I have a downward trend, or just a momentary blip.

I myself was blown away, and am estatic.

That's it for now, may God bless each and every one of you!

Well, wow!!
I started Xtandi on 2/28/22, then on 3/17 I had my PSA test and Onco appointment.
Was I blown away!! My Onco said to not expect any change for a few months.
Well, PSA plummeted from 1.23 to 0.18.
I'll say I'm pretty happy with that.

Take care all and may the Good Lord bless each and every one of you, he has me.

Well, three updates in one month, well two since I duplicated the first one.

Another PSA test six weeks after starting Xtandi. 0.09.

This is the lowest my PSA has been recorded in my 8 1/2 years on this journey.

I am stoked!! Next test is in June, my Oncologist was impressed how fast it has gone down.
Maybe I'll go undetectable????

As Bugs Bunny use to say "That's all folks!"

May God bless each and everyone of you!

I just got my latest PSA test results back.

Woo hoo!!

Down from 0.09 to 0.04, that Xtandi is some pretty marvelous stuff.

Take care y'all!

Love ya!

May the good Lord bless you and keep you in His good graces!

Well, this isn't really an update, but more of a diary entry.

I don't really have any one to talk to, so I'll talk to this board as if it's a diary.
Two appointments ago I asked my Onco about how long certain treatment on average continued to work.
He said, Xtandi 8-10 months, then Zytiga about the same.
And then he said without being asked. "3 to 5"
Last week I asked the PA, if I had heard that right, and if it meant what I thought it meant.
She said yes, I've been fairly depressed every since then.
I'm only 63, and to think I likely won't be enjoying my retirement or for that matter reaching 70.

Be kind to your family, love them without holding anything back, forget old scores.
Be kind to everyone, love them without holding back.

Have peace in your life.

May God bless and keep you all!

Well, I forgot to post last PSA check in early August.

It was great news, PSA dropped from 0.04 to 0.02.

That's pretty darn awesome!!!!!

Next week are my next blood tests.

Crossing my fingers to drop into the undetectable realm.

I'll do my best to post a much more timely update!

Love y'all.

May the good Lord be with each and everyone of you!!

Well, howdee doooo!!

That PSA should have a less than sign in front of it, but it's a numeric only field.

As promised here's my update.

My PSA did indeed drop into the undetectable realm.

I am so relieved and happy.

I've been on this journey 9 years next month. 10/21/2013 to be the exact date of my biopsy.

So, until something changes, I'll be on the same road that I've been on since 02/28/2022.

Although I will get periodic scans to make sure the PCa hasn't mutated to neuroendocrine or small cell PCa.

Love y'all!

God bless each and every one of you!!

Nothing has really changed, I'm just bummed.
My oldest brother was just diagnosed with small cell lung cancer.
He starts radiation today, that will continue everday for seven weeks.
He will also start chemo tomorrow, just once a week for three weeks.

I'll post up again late in December or early January with new test results and scan results.

Prayers for all of you!

Had my quarterly blood tests and CT and bone scans last week.

All is simply marvelous. Still an undetectable PSA, and the scans were clear.

May God bless each and every one of you!

Well, I had a CT and a Bone scan at the end of December, and they both came out negative, well should I say nothing is bigger. I saw the same lymph nodes as the PET scan did last year. But they didn't get any bigger.

Also, my blood tests were pretty good. My PSA for the second time in a row is undetectable. Woo hoo!! Also my hematacrit is up over the last year 5% from 34 to 39. Which numbers having to do with my red blood count are going up also.

Feeling good about all of this!

Well, next blood tests in April, catch y'all then.

May the good Lord bless each and every one of you!!

A recap of the last almost ten years.

DX'd in late 2013, started Lupron that same month October.
Had a radical prostatectomy in November.
Radiation in Summer of 2015.
Took a Lupron vacation in 2016, and that ended spring 2017.
PSA rose rather quickly.
When that urologist kind of blew off my the rise in my PSA, he said it was nothing, and yes going back on Lupron brought it back down. But.........
I soured on him and fired him for an actual Oncologist, hoping I'd get a bit more aggressive treatment.
Did the Lupron shots with a vacation until I got frustrated with the lack of aggressive treatment.
So about three years ago(2020) I went to KUMed in KC.
Stayed on Lupron with one more vacation in late 21.
PSA stayed up after starting back up on Lupron.
Woo hoo(not), castrate resistance.
I was put on Xtandi in February 2022.
Doctor said that the average time for Xtandi to work was 10-12 months.
Have been undetectable since 9/26/2022 (it's now April 2023). Now that's a WOOHOO!!!!
BTW Xtandi really kicked my backside over the last 13 months.
It was gradual, but it turned my mind into mush.
Finally my boss was going to put me on probation if my work didn't turn around.
Wake up call!!!!!!!!!!
I asked my Onco for some help treating the side effects, and he said I had to go to my PCP. So, much for helping with SEs.
I went to PCP, he prescribed both an anti-depressant AND an ADD medicine.
I haven't felt this good mentally in over 15 years.

I had my PSA test back in early June, I am still undetectable!!
Onco has scheduled me for one more test in September and then in December, test and scans.
Just a bone and a CT.

I'm fairly optimistic at this point, my Onco told me that the Xtandi on average works somewhere around 10 months before failure. I am at 17 months and still undetectable.

May the Good Lord bless each and every one of you!!

Not much to say except HECK YEAH!!

Last week I had my quarterly PSA test. 9/13/2023

Undetectable again. This makes it one straight year of undetectables.

And the whole time on Xtandi and Orgovyx!

I'll get some scans and more blood tests in December, but for freaking now, I'm happy!!

If the good blood tests continue, I'll get a two week vacation from both. Woo hoo!!

May the good Lord bless one and all!!

Sorry guys, I did not realize I had not given an update in over a year.

Well, here it is. February 2024 - I started a treatment vacation from both xtandi and orgovyas I had been undetectable for two years. This lasted until summer when my PSA became detectable. It was stil quite low , can't remember the level. so I went back on both drugs. I will see my Onco in late December. I will also see my Urologist in December to talk about both an Orchiectomy and having an AUS put in.

Well that's been my year!

Take care brothers!!

Love ya!!

Aleph's e-mail address is: alephbull AT gmail.com (replace "AT" with "@")