PSA Jumped: Just when I thought... - Advanced Prostate...

Advanced Prostate Cancer

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PSA Jumped

Scout4answers profile image
118 Replies

Just when I thought everything was under control and that I might even have a chance of a long remission I got what must be considered some bad news . PSA jumped to 0.12 from 0.01 which it had been at for the last 5 months. ( see below for history )

My MO said it may be a bounce following radiation, if so a little to high for my comfort. I have not heard of this before .

his message to me:

I reviewed your labs. You PSA is slightly up which can happen after radiation (I.e. the PSA bounce). Lets repeat your PSA in 1 month. A biochemical recurrence is when the PSA goes up above 2. You should also let your radiation oncologist know about the slight deviation.

For your reference, from the Phoenix criteria:

"A PSA rise of 2 ng/mL or more above the nadir PSA is considered the standard definition for biochemical failure after external beam RT, regardless of whether or not a patient receives androgen deprivation therapy. "

I plan to go back to 1000 mg of Abiraterone without a meal and have asked for a PSMA Pet scan to see what is going on. I will Also get a testosterone test today.

Your thoughts are appreciated...

6/8/21 - 21.40

took antibiotic (Cipro) for 30 days

7/13/21 - 12.10

9/2/21 started Lupron

11/5/21 - 1.34

11/6/21 started Zytiga 1000mg

12/15/21 - 0.25

1/13/22 - 0.12

2/15/22 - 0.05

3/18/22 -0.03

4/15/22 - 0.03

5/3/22 Halted Zytiga for 2 weeks because of high liver enzymes

5/15/22 - 0.01

5/15/22 restarted Zytiga @250mg with low fat breakfast <300 cal.

6/15/22 - 0.01

7/15/22 - 0.01

9/15/22 - 0.01

10/15/22 - 0.12

Testosterone has been consistently <7 since 11/5/21

118 Replies
treedown profile image
treedown

I am at a similar crossroad. Hopefully you see a drop or correction at your next test. That's my hope at least.

Izzygirl1 profile image
Izzygirl1

My husband unfortunately just went from 1.27 to 7.96. Doctor said "Sometimes the PSA rises as the cancer cells die and release it into the blood." I'm hoping it's that!

meowlicious99 profile image
meowlicious99 in reply to Izzygirl1

I am surprised that dead cells are causing that big of a bounce.

Izzygirl1 profile image
Izzygirl1 in reply to meowlicious99

I agree!

smurtaw profile image
smurtaw in reply to Izzygirl1

Fortunately rather common.

The postchemotherapy PSA surge syndrome - Annals of Oncology

annalsofoncology.org/articl...

PSA bounce following chemo
Cooolone profile image
Cooolone in reply to smurtaw

What exclusion criteria? Only ADT? I didn't see data whether RT or RP first line... Interesting nonetheless

smurtaw profile image
smurtaw in reply to Cooolone

I'm not sure. These were for RT with adjuvant ADT:

PSA bounces after neoadjuvant androgen deprivation and external beam radiation: impact on definitions of failure - PubMed

pubmed.ncbi.nlm.nih.gov/159...

Prostate-specific antigen (PSA) bounce and other fluctuations: which biochemical relapse definition is least prone to PSA false calls? An analysis of 2030 men treated for prostate cancer with external beam or brachytherapy with or without adjuvant androgen deprivation therapy - PubMed

pubmed.ncbi.nlm.nih.gov/164...

cesces profile image
cesces in reply to meowlicious99

You seldom kill all the prostate cells.

Cooolone profile image
Cooolone in reply to cesces

^^^This^^^

Scout4answers profile image
Scout4answers in reply to meowlicious99

right on target as I have discovered thanks to Pickleballplayer and T Allen

Scout4answers profile image
Scout4answers

Coco found this;

Experiencing a PSA bounce was associated with improved biochemical disease-free survival. PSA bounces are often seen after patients receive radiotherapy and are indicated by a temporary rise in the PSA level by at least 0.1 to 0.5 ng/mL without prostate cancer recurrence after radiotherapy.

So maybe it is really good news???

smurtaw profile image
smurtaw in reply to Scout4answers

I hope so. The PSA bounce after RT is a known phenomenon. It happens about a quarter of the time.

Is there anything else that you are doing differently? If so, maybe stop and after a few weeks, measure, then if you want, start and remeasure after a few more weeks.

PSA Bounce After Dose-Escalated External Beam Radiation Therapy Is an Independent Predictor of PSA Recurrence, Metastasis, and Survival in Prostate Adenocarcinoma Patients - PMC

ncbi.nlm.nih.gov/pmc/articl...

PSA bounce, prognosis, and clues to the radiation response | Prostate Cancer and Prostatic Diseases

nature.com/articles/s41391-...

Izzygirl1 profile image
Izzygirl1 in reply to smurtaw

Is a PSA bounce normal if you haven't had radiation therapy?

smurtaw profile image
smurtaw in reply to Izzygirl1

It's common after chemo. I'm not sure about other therapies.

What therapy was done?

smurtaw profile image
smurtaw in reply to Izzygirl1

Just read your bio. Your husband recently started chemo? A bounce could be a normal and perhaps good occurrence. If it continues to rise, I'd check scans. And of course, talk to his doctors.

Izzygirl1 profile image
Izzygirl1 in reply to smurtaw

Thank you very much! He finished his 2nd Docetaxel treatment on 10/4 and goes for his 3rd on 10/25. Hope you are feeling well.

smurtaw profile image
smurtaw in reply to Izzygirl1

Thanks. I feel very good. 4 years ago I was a physical wreck. Knock on wood, those days are over.

Izzygirl1 profile image
Izzygirl1 in reply to smurtaw

I'm SO glad you are feeling good! I'm a mental wreck now, but trying to take it one day at a time!

smurtaw profile image
smurtaw in reply to Izzygirl1

It's a hard blow. After I got on my feet I tried to find the positives in it. Spiritual, family, friends, how I could change my health (eat healthier, workout more, lower my cholesterol, etc). Then I started learning, learning, learning. I am in a much better place today than I was 4 years ago.

Izzygirl1 profile image
Izzygirl1 in reply to smurtaw

You are an inspiration to me! ❤️ Thank you!

Haa2020 profile image
Haa2020 in reply to smurtaw

Am encouraged by your story. Really happy for you. What protocol are on? I need to know what I can do to bring down my blood pressure. Have been on BP drug which was changed about 2 weeks ago. Am also Zytiga 250mg and Prednisone which I take in the morning with pap (locally made corn cereal). On 3 monthly Zoladex too. My last PSA was 1.72. I jogged regularly covered 10km to 14km. However I stopped jogging a week ago because of my BP. I need guidance on what am doing wrong or right. Thanks

smurtaw profile image
smurtaw in reply to Haa2020

Thanks!

I'm doing a modified BAT program. I have been using 1000 mg of Zytiga with 10 mg of prednisone (5 mg AM and 5 mg PM). I'm switching to Xtandi and for the last couple of weeks have been doing both of them (and Lupron and a low-dose estrogen patch). I'm going to go off the Zytiga and slowly ramp down the prednisone. You don't want to stop prednisone cold turkey because your corticosteroids will take a while to recover.

How high is your BP?

Have you asked your MO about increasing your prednisone or perhaps switching to an AR blocker (e.g., Xtandi)? And is there any possibility of ramping the Zytiga up and down (e.g., 250->500->1000->500->250/repeat)?

Exercise is very important for us. If you can get your BP under control, the jogging and a little light weightlifting would be a help. Some people are sensitive to sodium. Are you following AHA recommendations or a DASH diet? The AHA diet seems good and my diet is similar.

Seasid profile image
Seasid in reply to smurtaw

i am sensitive to sodium.

Haa2020 profile image
Haa2020 in reply to smurtaw

Thanks again. Am really having difficulty in getting affordable Zytiga in Nigeria. Our medical insurance is zero here. Am just struggling to fund medical care. Very stressful and unfortunate. I tried to buy Zytiga through Goodrx but Nigeria is not listed on there site. Still confused and wondering about where help can come from.

No_stone_unturned profile image
No_stone_unturned in reply to Haa2020

I’d suggest filling out your profile with your story, dx and treatment history. Perhaps if ppl here knew you better, you’d find more resources to help you. Just a thought. I sincerely feel for you. I can not imagine fighting this disease with limited resources.

Haa2020 profile image
Haa2020 in reply to No_stone_unturned

Am 57yo. Was dx of prostate cancer Gleason 9,stage 4 in February 2020 and started 3 monthly Zoladex in March 2020. My PSA at the time of dx was 330. After one on Zoladex the PSA dropped to 4 but later climbed to 47. Subsequently, Zytiga 500mg with Prednisone 5mg was added to the 3 monthly Zoladex. This new combination brought my PSA to 2.71 and later to 1.72 (my last test was September 2022). However, in towards the end of September 2022 I started experiencing slight increase in my BP. Am also BP patient and have been on medication. I jog and walk regularly covering average of 11km, 10,000 steps at least three times a week. However, due to the rise in my BP I had suspende my jogging and walking.

I am a retired Nigerian military officer on monthly stipends and limited access to medical care. All treatments regarding prostate cancer are borne by me. My challenge is how to get affordable drugs and assistance. Will deeply appreciate any help.

Seasid profile image
Seasid in reply to Haa2020

the proper dose of Zytiga is 1000mg morning on the empty stomach and 5mg Prednisone morning plus 5 mg Prednisone evening.

i believe some people drop 5mg Prednisone evening if there blood pressure is stable.

i suggest you take your Zytiga on empty stomach so the dose is more constant otherwise it is difficult to figure out how much Prednisone you need and of course the cancer effect of the Zytiga depends on the effective dose.

you should keep in mind that the proper (matching) dose of the Prednisone to the effective (apsorbed) dose of the Zytiga is required to stabilize your blood pressure.

if you don't take your Zytiga on the empty stomach than you don't know how much is it apsorbed and it can result in elevated blood pressure.

sorry my English is not very clear. If you have questions just reply to me and I will try to answer properly.

Seasid profile image
Seasid in reply to Haa2020

you can also read TA explanation in this post, it is much better than my about dosing Zytiga and Prednisone in order to stabilize your blood pressure.

TJGuy profile image
TJGuy in reply to Haa2020

I bicycle 40 to 50 miles a day. I cannot take my BP meds before cycling or my BP goes too low 90/60 and get light headed. Feet and hands lose circulation and get cold.

Exerciseing lke I do for hours loosens up your arteries and veins, and will lower BP some on its own. Adding in meds to also do the same and iis too much.

So taking BP meds after cycling works for me, tend to stay like 117/80.

Haa2020 profile image
Haa2020 in reply to TJGuy

Many thanks

KocoPr profile image
KocoPr in reply to Izzygirl1

i got a psa bounce 1 month on lupron PSA went from 15 to .39 then one month later started darolutamide and just by chance i had a PSA test 4 days after starting daro and a day before next lupron shot and my PSA jumped to 2.27. It went back dow one month later to 0.75, and 2 months later to 0.14.

I researched it but could not find any data on it as probably no one gets PSA test 4 days after starting darolutamide.

We agreed it was die off.

Don_1213 profile image
Don_1213

My radiation oncologist refers to this as "talking you down off the ledge.." where a patient go into a panic over a change in PSA. He seemed to think my regular observation of my PSA was indicating I was on the ledge. I wasn't since I understood a number of likely reasons for a change in PSA.

As your MO mentioned, a PSA "bounce" is not uncommon after radiation treatments (I believe something like >25% of patients doing radiation experience it.) It's entirely possible and likely that's the reason for the increase. There are a number of papers on the subject, and even some studies claim to show a decreased likelihood of a PCA recurrence if the patient experiences a bounce after radiation.

I see you have the PSA numbers nicely laid out in your bio (I should really do that.. maybe after I receive the most current results today I will) and your numbers were quite low. Most radiation treatment patients do not get the ultra-sensitive PSA reads after treatment. Supposedly Medicare will only pay for standard PSA tests after radiation (a sensitivity limit of 0.10), but it appears they actually only rarely enforce that.

The current 0.10 seems like a big jump from your 0.01 readings, but was it done on the same machine, same lab, and same tech?

That's the other reason for questioning a sudden change like this. Was the test still an ultra-sensitive one? If so - you would be at the bottom limit of detection, and someone might have just left out the "<" symbol on the report. It's also possible that something in the lab wasn't done right, or was out of calibration.

One reason I always question how accurate the readings are is - I had 2 PSA tests run the same day, from sequential blood samples, done by the same lab on the same type of machine (can't say if it was the exact SAME machine though) by the same tech, and got two significantly different results back. I'd have to look these up, but roughly - one was 0.17 and the other was 0.23 (I'm not longer on ADT so my numbers are higher - which is normal.) Why the difference? No one could come up with an explanation. Same sample, same type of machine, same tech - different results. Go figure.

Your PSA listings don't have T levels associated with them, so it's hard to say how that might affect the readings for PSA, but since you still have a prostate, and probably some viable prostate tissue - physical things (bike riding as you describe in your writeup, sex - you mentioned also 3-4x per week) could all possibly be causing an elevated PSA reading.

I'd wait to see what your next PSA result is, and step back off the ledge. Chances are it will be lower than the last one was. If it continues on an upward slope, when it reaches 0.2 it might be time to consider pushing for a PSMA-PET scan (and that's considered a valid reason for doing one.)

I'd also suggest Googling "PSA bounce" or "PSA bounce after radiation" - and reading some of the papers that pop up in the results. That might put your mind at ease a bit.

Good luck!

Scout4answers profile image
Scout4answers in reply to Don_1213

Thanks Don very reassuring...

This study indicates that a bounce is the best thing that could be happening right now.

ncbi.nlm.nih.gov/pmc/articl...

Like trading, this stuff is so counter-intuitive.

Don_1213 profile image
Don_1213 in reply to Scout4answers

That's exactly the paper and study I was referring to..

cesces profile image
cesces in reply to Don_1213

Very good comments and analysis.

"but was it done on the same machine, same lab, and same tech?"

Labcorp is very good at standardizing is assays across the country.

Don_1213 profile image
Don_1213 in reply to cesces

Up until the incident I described I would have said the same about Quest..

cesces profile image
cesces in reply to Don_1213

Labcorp intentionally trys to do this, and has specifically designed their protocols to accomplish this.

I don't think you can say that about quest.

Don_1213 profile image
Don_1213 in reply to cesces

No idea. Since I don't know how LabCorp accomplishes this (do they have a "standard sample" that all the labs use for calibration?) I can't compare them to Quest (since I don't know what techniques they use for standardization of results. It would seem a primary goal of any lab to get accurate and repeatable results, even across multiple labs.. but in this case - same lab did it, same day, about 10 minutes apart, same machine type used, and I'd assume the same machine, and the same tech listed for both.

My background includes rather extensive lab work (basic physics sort of stuff) and variability is always a no-no for acceptable results, but also - any procedure or test will have some margin of error that's considered acceptable due to the nature of the test and equipment used to do the test. I've never seen "+/- some value" listed after a PSA test, but I bet there is a value...

cesanon profile image
cesanon in reply to Don_1213

I had to get tested in different locals. I expressed this concern to my Doc.

He actually called up Labcorp's national lab director to ask about about. He was satisfied with the answer. Apparently they have a handful of sites that do the ultra precision test... and they test these sites against each other.

They probably don't do this with the non-ultra precision test. Makes sense to me. They are probably catering to the people needing PSA testing for research purposes.

I do notice on my lab results details about the testing. These details in the past from other labs have seemed to vary. Labcorp details seem to always be the same.

Justfor_ profile image
Justfor_ in reply to Don_1213

I have run across a FDA certification document mandating a "20% intralab" maximum variance. Is that +/- 10% or say -15/+5% or even |20%| (i.e. ABS 20% -> +/- 20%) it didn't specify. Under the latter your 0.23 vs 0.17 was within specs.

"....many of the currently used assays have intralaboratory coefficients of variation greater than 20% for PSA concentrations less than 0.4 ng/mL...."

Excerpt from: medicalsystems.it/wp-conten...

Scout4answers profile image
Scout4answers in reply to Don_1213

Yes same Lab

T consistently under 7 but plan to get another one today to make sure ADT and Abi are working properly

cesces profile image
cesces

It could be nothing.

You need several rising readings in a row.

if it makes you feel better start doing weekly PSA tests.

Its the trend that counts.

Its still low. And won't be important for a long while.

lokibear0803 profile image
lokibear0803 in reply to cesces

For me, doing weekly PSA’s made me feel (much) worse — there’s just too much variability, and the numbers end up not meaning that much.

anonymoose2 profile image
anonymoose2

Gleason 8, 4 years ago RT bounce to 17.1 currently 7 months vacation sitting @ 0.174

Feel great!! Every 3 months check PSA

At almost 70 happy with the outcome but ready for any changes especially if I see 2.0 PSA.

Scout4answers profile image
Scout4answers

Thanks anonymoose2 for a potential glimpse into my future. Bounce may be a blessing!

I know I am one of the luckiest guys on the planet.

Tall_Allen profile image
Tall_Allen

Re-test in a month. Try a full dose of Zytiga, without meals.

Scout4answers profile image
Scout4answers in reply to Tall_Allen

Thanks Allen , I thought before I change the Zytiga dose I will get a Testosterone test, if it is still 7, I will know that it is working.

Tall_Allen profile image
Tall_Allen in reply to Scout4answers

That won't work if other androgens created by your adrenals and tumors are activating your AR. The only way to tell is to increase the dose.You might look into buying it through GoodRX or Costco if you can't afford it.

Scout4answers profile image
Scout4answers in reply to Tall_Allen

Fortunately price is not the issue it was liver enzymes, thanks for the reply

Tall_Allen profile image
Tall_Allen in reply to Scout4answers

Liver toxicity can only occur if your absorbed dose is too high for it. Food increases the absorbed dose. So cutting back the number of pills you take, if you take them without food, will reduce your absorbed dose, and will reduce liver toxicity and abiraterone effectiveness.

But if you take the pills with food, you are just increasing the absorbed dose. The risk is that the amount absorbed is not the same for every patient or even from one time to the next (depending on what is already in the gut and your microbiome). If your liver toxicity reduced when you cut the # of pills and took them with food, it may be a signal that the absorbed dose is too low to be effective.

The only reason to reduce the # of pills and take them with food is to save money.

Scout4answers profile image
Scout4answers in reply to Tall_Allen

TA

Really confused about that as my liver enzymes changed back to normal as soon as I reduced the dose. That was back in May and they have been steady since on one 250mg cap with low fat breakfast.

Are you saying that perhaps I should take two or three 250mg caps with no food to keep my enzymes down?

Or perhaps increase my food intake with one 250mg cap?

in reply to Scout4answers

No, This is a point of confusion for many. Taking 250mg with a low fat breatfast CAN be the same as taking 1000mg on an empty stomach. The end result, the amount of AA in the blood will be the same. If you are taking 250 mg with breakfast and not having liver enzymes, and your psa is going up, it may be that the AA in the blood is not at the therapeutic level. You should be taking 500mg on a empty stomach and then slowing increase up to 1000mg on an empty stomach to ensure you are getting the correct dosage every day.

Scout4answers profile image
Scout4answers in reply to

You should be taking 500mg on a empty stomach and then slowing increase up to 1000mg on an empty stomach to ensure you are getting the correct dosage every day.

Define slowly

in reply to Scout4answers

That I can't define...you should work that out with your MO...a WAG would be 250mg increases every 1-2 weeks until you get to 1000mg. With zytiga being generic...no need to take 250mg with a meal...why add the uncertainty...a risk not worth it IMHO.

Scout4answers profile image
Scout4answers in reply to

During my communication with my MO this morning he was focused on the spike theory and did not think it is yet necessary to to start ramping up my Zytiga doses.

in reply to Scout4answers

I would follow your MO's direction. I was just commenting on why the 250mg with a meal is not a good idea given the generic cost of AA.

Scout4answers profile image
Scout4answers in reply to

I need to have another discussion with my MO, now that I have a better idea of what my problem is. Thanks for your help.

smurtaw profile image
smurtaw in reply to Scout4answers

In this case I think it's wise to listen to your MO. These studies conclude that PSA bounces are quite common following RT, even with ADT. I don't know if AA perhaps eliminates the bounce, but I don't see a clear mechanism for it to accomplish this. Xtandi might mask it since it reduces PSA expression.

PSA bounces after neoadjuvant androgen deprivation and external beam radiation: impact on definitions of failure - PubMed

pubmed.ncbi.nlm.nih.gov/159...

Prostate-specific antigen (PSA) bounce and other fluctuations: which biochemical relapse definition is least prone to PSA false calls? An analysis of 2030 men treated for prostate cancer with external beam or brachytherapy with or without adjuvant androgen deprivation therapy - PubMed

pubmed.ncbi.nlm.nih.gov/164...

I had blood pressure and fatigue issues on Zytiga. My MO told me to reduce the dose to whatever I felt was a good one (her words: "this is not rocket science"). I did that and then very slowly ramped up. 25%, 50%, 75%, 100%. No problems.

in reply to smurtaw

if the bounce is associated with biochemical failure doesn't this imply the person is not on ADT otherwise it would mean castrate resistance which is not biochemical failure.

smurtaw profile image
smurtaw in reply to

I'm only posting the research - some studies were specific for RT with adjuvant ADT. I didn't bother to go into the raw data.

At this point in time, it isn't pertinent for me. If and when it is, I'll look into it more.

My style leads me to test no matter what the research tells me. If it happens to one person in a million and that person is me, it's 100%.

in reply to

I thought you provided this reply for scout4answers....

smurtaw profile image
smurtaw in reply to

? Listen to your MO with some studies? Or?

Scout is on ADT. I am on BAT. He did RT. I am not doing RT.

Tall_Allen profile image
Tall_Allen in reply to Scout4answers

"Really confused about that as my liver enzymes changed back to normal as soon as I reduced the dose. That was back in May and they have been steady since on one 250mg cap with low fat breakfast."

You have been chronically underdosing and its diminished effectiveness may now be showing up. As I wrote: "If your liver toxicity reduced when you cut the # of pills and took them with food, it may be a signal that the absorbed dose is too low to be effective."

Some patients find that reducing the number of pills and slowly ramping the number of pills back to 4 allows the liver to get used to it. Or, you can try switching to enzalutamide or apalutamide instead.

Scout4answers profile image
Scout4answers in reply to Tall_Allen

Let me ask you a more pertinent question about PSA spikes. I started Radiation on June 27 and ended July 27th so this spike is 2 1/2 to 3 months following the end of radiation. Is there any data on when these "good spikes" occur following radiation? is this the normal time for it to occur? How long do good spikes last for?

I have been on ADT and Zytiga for just over a year

Tall_Allen profile image
Tall_Allen in reply to Scout4answers

There should be no spikes if ADT+Zytiga is effective.

Scout4answers profile image
Scout4answers in reply to Tall_Allen

Thanks so much for your input and helping me understand the nature of my problem.

see my response to smurtaw below for my plan.

smurtaw profile image
smurtaw in reply to Scout4answers

I "think" that the bounce might start 1-6 months following RT. It might last up to a couple of years. I'd discuss with your RO and or MO.

PSA Bounce and Biochemical Failure After Brachytherapy for Prostate Cancer: A Study of 820 Patients With a Minimum of 3 Years of Follow-Up - International Journal of Radiation Oncology, Biology, Physics

redjournal.org/article/S036...

What I would do if I was in your shoes:

#1. Talk to my MO/RO

2. Have my PSA retested. Make sure it is the same lab. Same test. Same time of day. No sex or exercise within 24 hours.

3. Stop all alternative therapies. Wait 2-3 weeks.

4. Have my PSA retested.

5. Take full dose Zytiga on an empty stomach. Yes, it will suck for your liver but a month of it will hopefully not be hard on you. Wait 3-4 weeks.

6. Have my PSA retested.

7. If nothing seems to help me figure it out and my PSA is going up, I'd do a PSMA-PET scan. There is a good chance that it is a bounce.

If all else fails, something to discuss with your MO is the possibility of switching from Zytiga to an AR blocker. Or perhaps trying dexamethasone instead of prednisone.

Scout4answers profile image
Scout4answers in reply to smurtaw

Thank you

Both TA and Pickleballplayer have convinced me that I should increase my Zytiga dose on an empty stomach. 500mg for 2 weeks then 750 for 2 weeks and the 1000, get PSA and enzymes tested every 2 weeks.

beneficial PSA spike following radiation while on ADT + Zytiga is bogus.

smurtaw profile image
smurtaw in reply to Scout4answers

Why is it bogus? I'm not arguing, just curious since I might someday be in the same position.

Scout4answers profile image
Scout4answers in reply to smurtaw

Bogus is probably too harsh. Spike due to radiation is probably the wrong focus, most likely Abi under dose is problem. Easy to test Abi theory, no test for rad spike theory.

My guess this is exactly what you would do in my circumstance. ;-) empirical evidence is what matters.

smurtaw profile image
smurtaw in reply to Scout4answers

Lol! Yes. Test what I can to try to rule things out or in. We have common backgrounds. If you stick to your guns, you die. I stuck to them for the first two years. Eaten alive is an understatement.

And what matters is what happens to you. Who cares if 99% of guys in a clinical trial are helped by xyz if you are in the 1% that isn't helped. Great for the 99%...

Scout4answers profile image
Scout4answers in reply to smurtaw

I like all of your ideas, the hardest one to follow will be " no sex for 24 hours"

in reply to Scout4answers

The spikes occur when you are not on ADT....if you are getting spikes after IMRT while still on ADT...that is concerning and may be a result of under dosing the Zytiga as TA noted in his reply to you.

Scout4answers profile image
Scout4answers in reply to

Thanks so much for your input and helping me understand the nature of my problem.

see my response to smurtaw above for my plan

smurtaw profile image
smurtaw in reply to Scout4answers

Intratumoral T won't be caught in a test.

If you need a bottle of AA let me know.

Scout4answers profile image
Scout4answers in reply to smurtaw

Thanks Bro appreciate the offer, I can get it at low cost and am well able to afford it. Best if you share it with someone in real financial need.

Seasid profile image
Seasid in reply to Scout4answers

you should take a medication the way as it was approved by the FDA.

if you are taking your medication some other way or dose you are experimenting on yourself.

i would also ramp up the dose slowly if you have liver problem.

i am not a doctor but if you have a genuine problem with your liver (maybe diagnosed) than consider switching to Xtandi or Apalutamide if you can.

i believe Xtandi (Enzalutamide) is easier on your liver.

i just hope that you don't have liver desease. You can do fibroscan of your liver and repeat it on regular intervals it to see the effects of the medication on your liver.

my grendfather died from his liver as he probably had hep B and was drinking alcohol.

my point is that you should be careful

Scout4answers profile image
Scout4answers in reply to Seasid

Thank you I will monitor Liver closely

Not the same as you because I had a RP before my IMRT. During the 2nd month of my adjuvant IMRT, my PSA jumped from .6 to .7. 2 months after finishing IMRT by PSA dropped to .1 and reached < 0.1 within 5 months post IMRT. I do think a jump in PSA during IMRT is possible and expected. However, 2 or more months after IMRT and still on ADT + AA/prednisone, I would not expect a jump of .1. Like all of the other replies, it's speculation...you're next 2 PSA test will reveal the truth. Hoping this test result is an outlier and the next one returns to<0.1.

Carlosbach profile image
Carlosbach

Rooting for you

Papillon2 profile image
Papillon2

Someone has well said, “One good test is worth a thousand expert opinions.” I agree with whoever said it. I would start with another test, ASAP🤔.

timotur profile image
timotur

I would also be testing ALP to baseline it and see if it trends with PSA, to see if bone mets might be contributing to rising PSA.

ronronHU profile image
ronronHU

I was under the impression that BCR occurs when a PSA reaches .2.

London441 profile image
London441

Conventional ‘Phoenix Protocol’ says yes. Personally I wouldn’t wait that long.

Mrtroxely profile image
Mrtroxely in reply to London441

inyresting, I read 68 replys sofar....

i keep thinking

WOW........ 5 months roughly of ADT. Starts new treatment radiotherapy. See a solitary fluctuation in PSA. That increase is PSA increase is ''0.11 ''...... PSA less than 1 and no pattern of doubling????

But 'London 441' mentioned a waiting period?????

when do we start to worry, when do we push for tests? in my mind, it's a blip in a reading, with no pattern and a medical officer giving good reassurance??????



London441 profile image
London441 in reply to Mrtroxely

No I shouldn’t have said that. Needs to be confirmed as others have said. One test is not a confirmation. Also, what I would actually do I can’t know, and might or might not be what Scout (the OP) does.

In general, velocity (doubling time) would be my main concern, as established by more than a single test for sure.

Mrtroxely profile image
Mrtroxely in reply to London441

i beleive that's great question and one we needto think on for our

in reply to Mrtroxely

in your particular situation, I'd be more worried with what's going on in the UK than my cancer....you guys are making the US look good. And that is no easy task.

Mrtroxely profile image
Mrtroxely in reply to

????How'd you mean??

UK has been running round forcing and coercing people get injected with all manner of stuff over last few year???? It's ly natural people gonna be acting bit weird, and doing messed up stuff.

Als

so Don't think UK can ever make you guys look good.

you got a cadaver representing you on the world stage after that other thing with the funny hair n orange face was representing you.

ps, sorry not interested in 'your' cancer, just what we do about 'our' prostate cancer.

as you read this, try to imagine my voice in Prince Charles voice....

in reply to Mrtroxely

I'm joking with you...I'm reading this morning Boris is making a come back? I didn't vote for the cadaver and the orange man definitely has his faults but you have to admit he was dead on with the criticism the EU was too dependent on Russian gas. Just sayin...

Mrtroxely profile image
Mrtroxely in reply to

hah, yep, all bit insane.

not sure if America has a ruling entitled class system.

ours all just choose each other and what turn they take, whilst buggering each other at posh private sch

Scout4answers profile image
Scout4answers in reply to Mrtroxely

Not sure what the point about how many replies is... but bringing this up and having people comment has helped me to understand what the problem is and hopefully prevent it from becoming worse.

When your PSA is cruising along at 0.01 for many months and then jumps 1200 fold it sends a wake-up call. The sharing of knowledge on this board helped me form a plan of action that my MO was not yet ready to do. When I presented him with the facts learned on this board he readily agreed to adjust my medication.

I am intentionally shouting this :

THIS BOARD and THE PEOPLE SHARRING THEIR KNOWLEDGE IS AN AMAZING RESOURCE for which I am GRATEFUL.

Mrtroxely profile image
Mrtroxely in reply to Scout4answers

sorry, maybe London 441 helpe clear up for me.

so many replys pointing at all manner of issues, possibly causes panic, fear, just from 1 single test at such a small value change early in the start of a new treatment???

when should we start to fret?? What should we look out for??

Scout4answers profile image
Scout4answers in reply to Mrtroxely

why maybe? (think voice of Boris Jonson)

Mrtroxely profile image
Mrtroxely in reply to Scout4answers

hah. Possibly....what ever makes our days more entertaining.

Seasid profile image
Seasid in reply to Scout4answers

i agree.

It is good that we can think in a more structured way and recommend solutions.

smurtaw profile image
smurtaw in reply to Scout4answers

Let's up the reply number. Higher the better (or worse if you're shorting). Somebody is a winner.

Cooolone profile image
Cooolone

We all share our experience and hope to therefore help another in their path...

Sorry I'm late to the party in this thread. But I will offer my recent journey along this path. First, there's a depth of good information above that is great to see being passed around. Some very interesting indeed, some very helpful as well.

For me, my complete story in in my bio... But I completed 6 Docetaxel sessions last June. Prior to that, mid point in my Doce ride, I completed my Lupron shot and switched to Orgovyx . Stayed on that (only) post Chemo... Fast forward to this April, PSA was good, next test in July, jumped from <0.05ng to 0.12ng, then 0.24ng in Sept. 0.27 Oct... there was a test or two in-between, but we'll exclude them for clarity. Also, my T levels have always been below 10, except for a blip late July, coincidentally with the increase in PSA. Worry was becoming castrate resistant so soon post Chemo...? What was going on...? Like ... Whiskey Tango Foxtrot!!!

While discussing the issue and changes, I let my MO be aware of some issues I was experiencing that I thought might have nothing to do with my PCa, but thinking might somehow be causing issues? I was having very frequent bowel movements, and more than usual (times per day). An interesting small note of possible side effects of Orgovyx is in this area. Additionally, I take Metformin for blood sugar control, also a side effect of that. So, completely out of left field, my MO suspected a possible metabolic issue with absorbtion, ie, the oral GnRH Orgovyx. So, we decidely switched from the pill to the shot, I got Degarelix and stopped the Orgovyx. The response was immediate, T back below 10, and PSA stabilized.

All good I think, but the damage was done... I just finished a 2nd MRI in 3 months and this time, along with a new G68-PET scan. There's some suspicious spots now, and I think the absorbtion issue was prevalent for a time before the progression, or allowing the progression before it hit the radar screen. Now I think, or I hope, we can mop things up, spot treat and keep going with ADT. We discussed adding some other drugs (BRCA2 Olaparib) seemingly now because I've failed Chemo (3rd line) along with a receptor blocker. We shall see...

My point is this, it's not always straight away just the cancer itself. There are contributory factors that must all be considered when trying to identify causation rather than just examining it's effect (therapy). Additionally, we don't really ever test to determine, on an individual basis, the blood levels of the drug to determine personal efficacy do we? Just use the levels determined by trial and that's good, without looking closer. We fall back to PSA and T, but don't check anything else in regard to the drug itself.

When again, as I usually preach, we are all different. So only when anomalies occur, do we look closer. Maybe testing for this would help improve results for patients, rather than wait for failure. Designer modality individualized the patient and their response to drugs. Some more, some requiring less with the same or better results. As noted above, just the differences in using one drug with or without food, just wow! And how problematic if a patient is unaware?

So, accordingly, again... Metabolism is and should be a consideration when taking these drugs, especially the oral variety

Wishing you the best of luck and regards!

Scout4answers profile image
Scout4answers in reply to Cooolone

. So many moving pieces when one is on 7 prescription drugs and a few supplements.

Cooolone profile image
Cooolone in reply to Scout4answers

Would definitely enter this into the discussion then... And has me concerned moving forward as well regarding any oral medication. I've always had a crazy metabolism, wife loves sleeping next to me in winter, hates summer lol as I'm always HOT, lmao. But same too regarding body weight, could eat a horse and not gain, even since ADT. The bowel movement uptick I believe was definitely an effect from the drug(s). Has since subsided as well once switched from Orgovyx to shots.

Hope you can identify the causation and counter it's effect!

All the Best!!!

smurtaw profile image
smurtaw in reply to Cooolone

Good work figuring out what works for you and I'm glad you have an MO who helped.

Scout4answers profile image
Scout4answers in reply to Cooolone

MO suspected a possible metabolic issue with absorbtion,

Low absorption of medication was causing frequent BMs?

Cooolone profile image
Cooolone in reply to Scout4answers

Yes, and no. Frequency meaning consumption of meals and prescription, then subsequent frequency of movements may have caused the drug dwell time in my system to be less, and I agree. And by example of evidence he was correct. Not that the low absorbtion of drug was causing frequency of BM's.

Interestingly, my blood sugar control was less as well, taking metformin and my average had increased, and has since been better... Causation or Association indeed. Was a left field suggestion, and we weren't sure if it was the cause. So we switched to the injectable to see the result, take shot at it (pun intended) and in short time, a difference occured.

Scout4answers profile image
Scout4answers in reply to Cooolone

So in my case the frequency of BMs may have some effect on the dwell time of the Abiraterone causing less absorption and hence raising PSA?

So I would need to figure out what is causing increased BMs?

Cooolone profile image
Cooolone in reply to Scout4answers

Moving to PM's

Break60 profile image
Break60

imho you’re psa is way too low for a ct pet to be of any use. Just hang in there and wait till your next psa test.

Lulu700 profile image
Lulu700

Hey Scout! I think it’s such a minor blip that it’s hopefully nothing to worry about . That was one reason I quit the ultra sensitive Psa. Now if it’s over 2. Then We got an issue . Stay the course amigo! Go team coco!

Scout4answers profile image
Scout4answers in reply to Lulu700

Not worried at this point just trying to get an understanding of what is going on. As many have pointed out it is just a minor blip so far.

Lulu700 profile image
Lulu700 in reply to Scout4answers

It’s a dammed numbers game! Good day! ✌️

Yingsang profile image
Yingsang

He who asks a question is a fool for 5 minutes, he who does not ask a question remains a fool for ever. You Sir have a lot of Followers. You received many responses. The answer you seek may not be found within your normal practice of monitoring, PSA. I see a lot of guess work responses, and some may be right. I do not have an answer either, to the unusual jump in your PSA. But I would look elsewhere. Some responses point to others having similar issues, yet it does not exactly answer why. As not all who are on an ADT program after radiation, follow the same pathway. Sometimes the answer can be found in looking at other numbers, that we test for. You may find answers by looking at Testosterone[you say you are >7], DHT, Estradiol, Estriol, Pituitary Function, Thyroid Panel, Prolactin, and do a complete Blood and Chemistry panel.

I would say if you do not find anything unusual, then a bio-chemical activity is occurring with the cancer cells. And the theories on this and how this occurs are many. Most of the time PSA rises with your low burden, are usually do to an increase in total Pca cells. Cancer Cells dividing to make daughter cells.

Scout4answers profile image
Scout4answers in reply to Yingsang

Thanks for a thoughtful reply

I think the most logical explanation is under dosing of Abiraterone and it is easy to test that theory. Bad news is my cancer has not yet been cured by ADT and radiation. Any plan to stay on ADT for less than 24 months is out the window. If that does not rectify problem I will pursue DHT, Estradiol, Estriol, Pituitary Function, Thyroid Panel, Prolactin,

complete Blood and Chemistry panel. have been done and are not far off normal

Seasid profile image
Seasid

how did you come to the idea to take 250mg of AA with light meals?

Scout4answers profile image
Scout4answers

U of Chicago did a study that found it was just as effective as taking 1000mg on empty stomach. My MO thought it would be an effective way to deal with my rise in liver enzymes. It seemed to work for 4 months.

At this point I can not rule out the beginning of resistance to ADT. time will tell.

Seasid profile image
Seasid in reply to Scout4answers

why would not you take the drug the way FDA approved it?

You shoud match the dose of absorbed AA with the appropriate amount of Prednisone and that is a challenge.

if i would you I would just use it on an empty stomach. Than you would know the appropriate amount of Prednisone to take. You would avoid problems with your blood pressure and liver problems etc.

where are you treating yourself?

Scout4answers profile image
Scout4answers

is there a test to measure absorbed amount of AA?

Seasid profile image
Seasid

i would just take the medicine the way FDA approved it.

you can ask your oncologist about the blood test.

i would not bother. I would just take it on empty stomach. I believe that is also your intention.

how many other drugs are you taking?

Scout4answers profile image
Scout4answers

too many...

Seasid profile image
Seasid

i am only on Degarelix injections and high blood pressure medication at this moment.

did you consider changing oncologist?

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