Bummed, PSA went up 0.08 in a Week! Am I failing ADT?

[Shorehousejam]

Ok being dramatic

Rising PSA? So damn soon? 15 months in

Gleason 8/9

Low Volume

High Grade

History

Dx 07/01/2022

Firamagon @28 days

Zytiga with prednisone daily

Metformin 500 mg daily

Completed 6 Sessions of Docetaxel by 01/06/2023

Davinci RP w/ PLNR surgery 03/14/2023

No Supplements

No Bone Injections

Remained undetectable for only 15 months, this sucks…

So, my New Add On Medical Oncologist states

I’m Oligo Metastatic

He did labs and did a MRI (11/14/2023) and he will see what’s going on,

At my other cancer care hospital the previous 3 CT Scans all dated since 07/2023 states a mass,

on the Ct scan it showed up in May 2023

The Ct Scan stated as a reoccurrence, so it was a mass now a tumor, but possibly alittle smaller on one side it’s 1.3cm x 1.3cm

How much higher than PSA 0.19 do I wait for a pet scan?

Went to a Major Cancer Care of Excellence Hospital which is where

I presently have a Medical Oncologist I see every 28 days for my labs and Firmagon Injection.

I added on another Medical Oncologist which I plan on seeing 5/6 times a year at a Major Cancer Only Treatment Hospital.

My first and main oncologist which I have since diagnosis 07/01/2022 has not given me any scans since diagnosis

The gastroenterologist did CT Scans to see possible issue I’m having with blood in stool since July 07/2023 which so far has picked up diverticulitis, what a hag diverticulitis is

as I go 3/5/8 times a day…

Yes, still with some blood, anemic but with high ferritin.

I just went back to work after a 14 month hiatus and now my PSA is rising. 10/31/2023

Am I failing Firmagon and Zytiga with Prednisone already?

I work out in the field in the automobile industry.

Tonight 11/14/2023

My PSA was/is

Prostate Specific AntiGEN (PSA)

0.19 ng/mL

[0.00 ng/mL - 4.00 ng/mL]

( my psa rose 0.08 in 7 days)

Nov 7, 2023

0.11ng/mL

<=3.99 ng/mL

Oct 10, 2023

0.09ng/mL

<=3.99 ng/mL

Sep 7, 2023

<0.06ng/mL

<=3.99 ng/mL

Aug 8, 2023

<0.06ng/mL

<=3.99 ng/mL

Jul 6, 2023

<0.06ng/mL

<=3.99 ng/mL

I have a reoccurrence mass on my prostate bed, my first Medical Oncologist Does Not want to radiate yet probably not at all.,.

This MO only believes in systemic therapy mainly.

Second add on Cancer Care of Excellence Medical Oncologist will decide based on new PSA as of today and MRI, possibly with more test…

Davinci Radical Prostatectomy with Pelvic Lymph Node Removal:

All 8 Pelvic Lymph Nodes Negative for PCA but in fat deposit aside a lymph node had pca

After surgery pathology:

Positive Margins

Micro Bladder neck positive

Micro positive along bladder wall

So,

Am I already failing my first treatment line of ADT ?

I’m on a monthly Firmagon Injection

every 28 days and

Zytiga with Prednisone daily

Metformin 500mg Daily

[Shorehousejam]

It’s rising though

I always get the increase wrong

It’s only points after 1.00

Is that correct ?

[Shorehousejam in reply to Shorehousejam]

dac500 Hi, would you consider reading my post and giving me your opinion

Thanks In Advance

[dac500 in reply to Shorehousejam]

I wouldn't worry at this point. How long have you been on Zytiga? Sometimes Zytiga takes a while to kick in. I am not sure measuring PSA every week is a good idea.

[Shorehousejam in reply to dac500]

All in post history

Dx 07/01/2022

Firamagon @28 days

Zytiga with prednisone daily

Metformin 500 mg daily

Completed 6 Sessions of Docetaxel by 01/06/2023

Davinci RP w/ PLNR surgery 03/14/2023

No Supplements

No Bone Injections

[maley2711 in reply to Shorehousejam]

Were you diagnosed as metastatic when you had the RP? Seems you were treated as though metastatic prior to your RP? Did you have PSMA PET prior to RP......nowadays PSMA PET would have been SOC for your case.

[Shorehousejam in reply to dac500]

It’s not every week, in post I added a new secondary MO from a strictly cancer only hospital

Last week were my labs and Firmagon injection on my monthly Firmagon injection treating cancer care of excellent hospital

The labs and MRI with PSA added in is my second new MO, we see at a specific cancer only hospital

I have 2 MO concurrent especially with my mutation load

[Boywonder56]

Take a deep breath bro.....you are still" undetectable"... you would have to dble sevrl more time to be ready for psma...if you still have the walnut...jam on till u cant....bw

[Boywonder56]

P.s.quit ur job if u can.....stress wont help....unless you test drive ferraris...🤣

[Shorehousejam in reply to Boywonder56]

No prostate plus Mercedes lol close enough

[Kaliber in reply to Shorehousejam]

Lol

[Tall_Allen]

Your PSA is still very low. Discuss switching from prednisone to dexamethasone. Stop testing your PSA so often - you will only drive yourself crazy.

[Shorehousejam in reply to Tall_Allen]

The psa was only tested so close together because I now have a second MO

He wanted his own labs and MRI

[dac500 in reply to Shorehousejam]

Did you use the same lab for both tests? If not, results from two different labs may differ, sometimes quite significantly. Are you planning to go to this second MO from now on? So far my MO ordered only 3 monthly PSA tests. I had the temptation of going to another lab in the middle because I was worried about my PSA unnecessarily. But I did not because I trusted my MO.

My cancer became metastatic 5 years ago. My MO put me on intermittent Lupron. Every time I was on break I became very jittery about small fluctuations in PSA. From Ocrtober 2022 to August 2023 my PSA fluctuated between 0.34 and 0.29 even on Lupron. I was very jittery about my cancer becoming castrate resistant. Then Between August and November this year my PSA jumped from 0.3 to 0.8 and a PSMA PET/CT scan detected new PSMA avid lymph nodes. So I am castrate resistant and started Zytiga + Prednizone starting from November 10.

There are many lucky men on this board whose cancer has been under control for many years. Unfortunately, we are not in this lucky group. Nothing may stop our PSA jitter, but we can hang in there and hope for the best. In your case, I should wait for the next two monthly PSA test to figure out the trend. If it continues to go up, then you should go for a PSMA PET/CT when your PSA reaches a threshold determined by your MO.

[Hidden in reply to Shorehousejam]

I don't see aby PSMA/PET scans in you story.

Why are you talking to an MO about radiation, thats an ROs job. Get a proper RO opinion. What's wrong with radiating the prostate bed? Mine was radiated along with lymph nodes at a cancer center of excellence. Minimal side effects, and I have no evidence of disease. (I have no prostate, if you were going to ask!!)

[Shorehousejam in reply to Hidden]

I don’t have a prostate either, Oh it gets worse, I should have radiated before I started bleeding from rectum, the mass is now a tumor on prostate bed fossa, abutting rectum and bladder.

I have to do more scans or wait for a pet scan, I had one at diagnosis

[babychi]

Gleason 8/9 and you had surgery? Urologists need to take responsibility for not informing you that seeding may occur. I hope you research your next steps carefully.

[maley2711 in reply to babychi]

Other than brachy boost, surgery and RT have had the same efficacy results...whatever the "seeding " is.

[Nfler in reply to maley2711]

I wasn’t aware of seeding myself but have always wondered if surgery does spread it in heavier cases such as Gl 8/9. My psa hovered around6-7 for five years before surgery n then went up to 12 post op, I’m like wth 😳, so I’m pretty confident the surgery spread/released quite a few cells in prostate bed, fortunately radiation ☢️ and ivermectin have it under control now…

[Nfler in reply to babychi]

Yes my fringing urologists (3 total) didn’t mention a thing about seeding but I suspected that’s what happened after my psa went from 7 to 12 post op. I’m like isn’t this supposed to b the other way around…!

[Hidden in reply to Nfler]

Seeding theoretically happens during biopsy. The needle seeds the prostate bed/rectum wall.

[Nfler in reply to Hidden]

But there also is suspicion it happens during the separation of the marginal walls and or seminal vesicles not to mention carving out the prostate in general… hence so many people’s psa rises after surgery…

[Hidden in reply to Nfler]

The prostate lies on the rectal wall/fossa, and is attached by a layer of fat. Need to be a really incompetent surgeon to not separate properly.

[maley2711 in reply to Nfler]

If , a big if, seeding happens, that does not invalidate the overall results for the overall efficacy of RP .....if it happens commonly, RP results would suck....and they don't!!!

[Hidden in reply to maley2711]

40% of RP patients have BCR.🤨

[Nfler in reply to Hidden]

Mine was not bcr as it happened immediately following surgery going from 7 to 12 post

[Nfler in reply to maley2711]

Well how do you explain my psa rising from 7 pre to 12 post surgery immediately following…

[Shorehousejam in reply to babychi]

Seeding? I am oligo metastatic, has Transperineal Biospy, on adt, triplicate therapy, removed mothership and seeking aggressive treatment

[babychi in reply to Shorehousejam]

Just surprised RP was recommended with such high Gleason score. Radiation yeilded a very positive result for us. So far, so good. Great outcomes to you🌻

[maley2711 in reply to babychi]

There is little to no evidence that RT outperforms surgery....the only case is when brachyboost is used....... the plus of surgery is avoiding ADT in most cases.

My RO suggested that I should not rule out RP.....more and more older men are choosing that, per the RO. This was his reply when I mentioned my concern about the ADT with RT!!!

Yes I know.....there are pros/cons of either as initial treatment....pick your poison basically!!

[babychi in reply to maley2711]

Incontinence? Big side effect of RP apparently! Up to each to do their due diligence. Have a nice day🌻

[maley2711 in reply to babychi]

Yes, and there is a LONG list of potential SEs with RT +ADT......and almost all men will experience some of the ADT SEs......osteoporosis is NOT a good thing. Nor is impact on metabolic markers.

From my experience and from what I've seen written by other men, most Docs fail at adequately discussing potential SEs with men.

I hope you were one of the men who had a SE-free experience with with RT +ADT. If so, your secret?

[babychi in reply to maley2711]

I have nothing further to discuss with you. Buddy says you appear to be looking for argumentative folk to disagree with. That is not my agenda. We are in Kuala Lumpur enjoying our lives! Please enjoy yours. 🌻

[maley2711 in reply to babychi]

Thank you.

[EdBar]

Yes appears to be rising, it’s no longer undetectable. You probably need to get on a second line hormonal treatment like Xtandi or Abiraterone. After being undetectable for several years my MO, doctor Sartor recommended a PSMA scan when my PSA approached 0.2. It detected a spot on a rib that I had radiated with SBRT. PSA then decreased for nearly a year before rising again, so another scan and a spot detected on a different rib. I’m currently getting that radiated.

Ed

[Bspouse]

We were in a similar situation last month. Husbands PSA went up from .91 to .94 in a month. This great group calmed me down and said it was not truly a rising PSA until it goes up 3 times in a row. Thankfully, this next month's PSA dropped to .89. Hopefully yours will too.

[Shorehousejam in reply to Bspouse]

Thank you, praying it’s just a bump up, but it has risen in a month

0.06 to 0.09 to 0.11

[Don_1213 in reply to Shorehousejam]

I've posted about this before.. but I guess you never saw it.

I was tested twice from samples taken seconds apart, had both of them run at the same lab, same machine, same technician - and got different results. Significantly different results. Why? No explanation from the lab.

I still have a prostate and I'm off ADT - so my numbers will always be higher than someone who had RT. I had IG/IMRT/ARC radiation, 83 Gy. 45 times on the table.

The two reads in question are because two MD's asked for PSA tests, and the phlebotomist decided to fill those test requests by taking two samples and having two tests run.

The numbers were something like - 0.18 and 0.22 - not an insignificant difference. This was same day, same machine, same tech. Ones taken over a period of time, particularly if done at a different lab are not really valid comparisons.

Don't panic! (The Hitch Hiker's Guide to the Galaxy, Douglas Adams), and the answer is always 42.

[dmt1121]

First, I agree with Tall Allen that testing so frequently is not helpful clinically for treatment and will just raise your anxiety level unnecessarily. My experience is that meditation and deep breathing will help, as welll as finding a good therapist who works with cancer patients.

I am unclear on where is the tumor located. If it is on the bones, it can often be treated with SBRT or other radiation. Otherwise, a systematic treatment (i.e. abiraterone, enzalutamide, etc.) is your best bet for reducing the tumor size. I have botha soft tissue tumor near my bladder and had a bone lesion on my left femur which was treated with SBRT and have been on abiraterone for years. The bone lesion is gone and the abiraterone has kept my PSA in check.

Also, supplements can be useful for boosting your immune system and keep your bones healthy. I won't recommend anything on here but if you do careful research, you will find the key supplements that may help[. However, it's a personal choice. The MO will typically never recommend any supplements beyond vitamin D and calcium. You might also look into mushroom supplements that are cancer fighting, again this may or may not help. Everyone's experience is very individual.

Good luck.

[j-o-h-n]

Medical fact: Worry causes worts........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/16/2023 11:05 PM EST

[Shorehousejam in reply to j-o-h-n]

Worry makes my wife compulsively clean, cook and read, now at 57 she needs or wants nothing, well, we will see as the holidays arrive…

I’m betting on a younger healthier version of me 😁

[j-o-h-n in reply to Shorehousejam]

I bet you win...........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/17/2023 9:06 AM EST

[Tjc1]

I know it's hard but try to file the thoughts about what's going on away. Pull Em out once in awhile to check. I was in your spot a couple -few years ago. I drove myself nuts.After being on a break from ADT basically because of COVID for 18 months(it failed anyway) and I went on Xtandi I figured why keep taking it.

Fast forward to today, my PSA started creeping up and I have been back on ADT for a whole year. Against my judgement but my MO said I might have trouble getting things paid for if I don't. Well , it's not working. I'm now at 1.3 from undetectable a year ago.

Now to my point, years ago I would be flipping out, but now I'll just deal with what comes my way. No anxiety, I'll get a PSMA Scan next month when my plan G kicks in. Next week is my 13th year anniversary!

Worrying won't change a thing a matter of fact it's bad for you.

Give me the middle finger if you want. I understand.

Best of luck

Tom

[Shorehousejam in reply to Tjc1]

You are 100% correct, in my post above I did type just being overly dramatic, but I am bummed that I think I’m on the lower end of the statistics of SOC, failing first line at 15 months instead of 24 months to 5 years, like many on this board, darn mutations…

I’m praying it’s just a bump and I can radiate it back down to undetectable

Thank you for your kind words

[Nfler in reply to Shorehousejam]

Fyi ivermectin has shown to re sensitize castrate resistant Pca to hormone sensitive Pca in recent studies…

[Shorehousejam in reply to Nfler]

Thanks, I’m going to look into that, it’s a Shame these Physicians don’t use medications off label and in Cancer Care of Excellent Centers, I don’t they are allowed.

I wonder if Cancer Care Protocols which does not take insurance prescribes it at a ridiculous $1200 to $2400 for their protocols

Haven’t tried them and not xcures either

[Nfler in reply to Shorehousejam]

Yes agree it’s such a shame, these physicians’ hands are tied only to follow soc which is ran by the pharmaceutical Co’s, and are afraid to pursue much more promising drugs n treatments. When I was researching alternative meds I couldn’t find anything about it for months and then finally came across the pub med article on ivermectin being repurposed as an anti cancer ♋️ drug. There is overwhelming evidence n studies on it’s effectiveness in killing cancer, not just putting it to sleep. Cbd is also extremely effective in reducing tumors, killing cancer both at about $1/dose. I also came across Dr Chen in Seattle but never followed up as I had researched enough n found the right dosages myself. Good luck if u decide to go the more appropriate route

[maley2711 in reply to Nfler]

Could you help many of us by providing the link to that study that took you so long to find?

[Nfler in reply to maley2711]

here you go, one of many

Pub med article

[maley2711 in reply to Nfler]

Thanks, but that appears to be a pic of the article title.......I use a laptop, and nrmally just click on links to the article website

[Nfler in reply to maley2711]

Just Google article as I couldn’t get the link to pull up, or go to pub med n search it. There are quite a few interesting n beneficial articles to read.

[maley2711 in reply to Nfler]

you don't happen to know of a link for such a study?

[Nfler in reply to maley2711]

Patience patience my man, of course I do otherwise I wouldn’t say so… you can look it up yourself as well but here’s another

Ecuador study

[Nfler in reply to Nfler]

not to mention it seems to b working very well on my advanced Pca, good luck 🍀

Amazingly diversified results n efficacy