What’s Next? : Dad’s PSA has been... - Advanced Prostate...

Advanced Prostate Cancer

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What’s Next?

chocolatelover_123 profile image

Dad’s PSA has been rising for some time now. I feel that something is wrong. My father started Zytiga in 2019, he switched from prednisone to dexamethasone as well. His PSA was fluctuating between 0.03-0.05. Then it rose to 0.07, stayed stable then it rose to 0.11. Today’s checkup indicated his PSA rose to 0.19. His doctor suggested that they will do a CT and bone scan in 4-6 weeks and see if there should be a medication change. In the event that his cancer is spreading and his scans show progression, what should be his next treatment? Chemo or another ADT drug?

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chocolatelover_123
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46 Replies
Magnus1964 profile image
Magnus1964

Those numbers are still low. What other treatments has he received?

chocolatelover_123 profile image
chocolatelover_123 in reply to Magnus1964

When he was initially diagnosed in 2012, he would have Zoladex shots, radiation and had his prostate/other nearby lymph nodes removed. After 7 years when his cancer returned and a tumour on his sacrum/small specks in his lungs was found, they gave him radiation and got him started on Zytiga.

Magnus1964 profile image
Magnus1964 in reply to chocolatelover_123

The lung specks can be problematic, no way to tell if they are malignant or not without a biopsy and and that's not real doable. He could try Provenge. The bone met could be treated with radiation.

chocolatelover_123 profile image
chocolatelover_123 in reply to Magnus1964

Can they do radiation again on a met that was already previously treated with radiation?

Magnus1964 profile image
Magnus1964 in reply to chocolatelover_123

Not in the same spot. I'm not sure how far a new site would have to be.

I don’t think these minute upticks mean much right now . Still undetectable! Great job standing up for Dad!👏🏼❤️

chocolatelover_123 profile image
chocolatelover_123 in reply to

The upward trend of his PSA rising is giving me red flags, regardless of the actual numbers. And I think my father’s doctors are having the same feeling, hence why they want a CT and bone scan done. It may sound silly to some but being a 21 year old, having to deal with my father’s cancer journey makes me vulnerable and worried whenever things aren’t stable, such as his PSA.

Sorry for the mini rant, I don’t know if I even made any sense. But thank you for your lovely compliment.

in reply to chocolatelover_123

Nothing silly about it. Concern and care are good. Worry is not.. we all worry it fret about the future. You’re very mature . You can rant on all that you want. It just shows the love that you have got him. I read your first post . You were 19.. keep advocating .. ❤️

chocolatelover_123 profile image
chocolatelover_123 in reply to

Wow, time flies by so fast, it seemed as if everything happened yesterday.

Thank you for your support Lulu ❤️

in reply to chocolatelover_123

Hang in there with him. And Remember , a little dark chocolate never hurt anybody . Who ever taught you love and loyalty did a great job. I love ❤️ to see it .

Olivia007 profile image
Olivia007 in reply to chocolatelover_123

U can’t rant I do it all the time if u need to talk I’m here my name is Olivia

Stevecavill profile image
Stevecavill in reply to

0.17 is nowhere near undetectable. All doubling starts somewhere

in reply to Stevecavill

I do understand all fear of any rising numbers . It’s All part of the bad psychology of APC .

Stevecavill profile image
Stevecavill in reply to

Yes that’s true! But it’s also important to check psa doubling time as that’s an important prognostic indicator. Rising from 0.1 to 0.2 in 3 months is the same as rising 10 to 20 in 3 months.

I'm currently on Zytiga and Dexamethasone. I still have an undetectable PSA.

I had a discussion with my doctor at the last visit about when we would do imaging when Zytiga starts to become ineffective. He said he would wait until it hits 5 or so before doing a bone scan and CT because of the sensitivity of the scans not being that high.

Don't see any urgency at his PSA levels, It may go up slowly or even level off somewhere.

chocolatelover_123 profile image
chocolatelover_123 in reply to

I think the constant upward trend is what’s alarming my father’s doctors. It was levelled at 0.07 for 6 months (my dad has his checkups every 3 months) and then it started to rise.

If you don’t mind me asking, what is your PSA?

in reply to chocolatelover_123

My PSA is considered undetectable at <.01. The reality is in our situation, a PSA of .19 isn't much different. The only time a number that low is significant is if you are a guy who had surgery to remove the prostate and technically should have 0 PSA. A small rise in that perosn's PSA means his cancer is spreading and he might consider having what's called Salvage Radiation.

My doctor says we are treating the cancer, not the PSA. I'm not saying it isn't important to watch it, but chasing after small changes only creates stress. My doctor said we would image at a PSA of 5. I agree with that.

A PSA of .19 for someone who has stage 4 is not a level that you consider significant enough to change treatments. That's my opinion, but talk to his doctor about it since I am not a doctor.

chocolatelover_123 profile image
chocolatelover_123 in reply to

Yeah I totally understand what you mean. I think in my father’s case we just need to wait and see what the scans show

in reply to

From three years reading here I agree .

Tall_Allen profile image
Tall_Allen

Chemo or Xofigo.

chocolatelover_123 profile image
chocolatelover_123 in reply to Tall_Allen

What is Xofigo? Can it be taken while taking Chemo?

Tall_Allen profile image
Tall_Allen in reply to chocolatelover_123

Radium 223 dichloride. It kills cancer in the bones. It has to be used with a bone-preserving medicine (like Zometa or Xgeva), but it can be combined with chemo, it seems:

prostatecancer.news/2021/02...

Hillwalker87 profile image
Hillwalker87 in reply to Tall_Allen

Hi TA, does this ever get prescribed for patients with pain relating to nerves at all?

Tall_Allen profile image
Tall_Allen in reply to Hillwalker87

Well- if you mean because there is a requirement of symptomatic pain in order to get Xofigo, then yes, the oncologist may be able to get insurance coverage for it by noting the pain. But Xofigo will only relieve nerve pain if it is directly related to, say, a spinal met impinging on a nerve. It more directly relieves bone pain.

Makes sense, nothing else we can do right now besides wait and see what the scans show. Thank you for your input!

in reply to chocolatelover_123

Waiting is the hardest part . 🤞🏼You’ve got this . Be his strength .

Stevecavill profile image
Stevecavill

How far apart are those psa readings?. 0.11 to 0.19 is a significant jump, even though the numbers are small. The time it takes to double is the important thing. You may need to wait a while for the numbers to get large enough to show something on a scan

Can you get a PET scan (PSMA or axumin)? They are more sensitive than bone scan.

chocolatelover_123 profile image
chocolatelover_123 in reply to Stevecavill

0.11 was in February, 0.19 today in May. My father gets checked every 3 months. I will ask about a PET scan, thank you!

Stevecavill profile image
Stevecavill in reply to chocolatelover_123

So that’s almost double in 3 months which is quite quick, so good to get onto it sooner rather than later. If that rate is consistent it will be 1.0 in about 9 months

chocolatelover_123 profile image
chocolatelover_123 in reply to Stevecavill

I was under the impression that PSA doubling is concerning when PSA is checked every month..I’m not sure how PSA doubling really works at all actually. Any insight is appreciated

Stevecavill profile image
Stevecavill in reply to chocolatelover_123

It’s simply the time it takes to double. So 0.11 to 0.22 would be double. The doubling time of active cancer is fairly consistent. So an expected trend every 3 months (close to yours) would be 0.1, 0.2, 0.4, 0.8, 1.6 etc (that would be 0.1 to 1.6 in 12 months)

But as you only have 2 points where it’s been increasing consistently, you really need a couple more readings to get an accurate view of the trend.

chocolatelover_123 profile image
chocolatelover_123 in reply to Stevecavill

Thank you for your explanation!

SeosamhM profile image
SeosamhM in reply to chocolatelover_123

IMO, Steve is right - although small numbers now, this is a trend that needs to be actively monitored and supplemented by other data like scans, symptoms, and bloodwork. For example, does your father feel differently - new aches, pains? What the trend been in your father’s ALP (alkaline phosphatase) - this is a compound that can indicate bone met activity? Is his other bloodwork normal? These are all things you can discuss with your dad and his doctor.

As a guy on the same treatment as your dad, here is our reality: We will have to wait make the decision with our docs on the next treatment plan, which will be chemo likely followed by Xtandi (if all goes well). I am waiting until the data forces me to choose - my PSA is 0.33 but still declining after a 9/2020 switch from Zytiga + Prednisone to Zytiga + Dexamethasone (highest PSA of 1.5 in 8/2020 but with a “clean” scan that indicated no progression).

Monitor, and wait. In the meantime, your Dad and you should simply live! Put as much emotion into having a great summer as you do worrying over numbers! Good luck! - Joe M

chocolatelover_123 profile image
chocolatelover_123 in reply to SeosamhM

My dad hasn’t felt any new pain or aches and his blood work is normal, I’m not sure about the ALP. But he’s felt the same as he did when he started Zytiga in 2019.

mcp1941 profile image
mcp1941 in reply to chocolatelover_123

My MO will only do CT and BS when PSA reaches 2.0 or higher. Not really detectable below 2.0. If both scans come back neg. we would proceed with an Axumin scan. I have been battling PCa for 24 years

Mike P

chocolatelover_123 profile image
chocolatelover_123 in reply to mcp1941

Hmm, it seems like there’s a lot of controversy on this issue, it makes me somewhat confused as to what protocols my father should follow haha

And wow, 24 years, that’s impressive!

SeosamhM profile image
SeosamhM in reply to chocolatelover_123

That's sorta the point, CL - your dad needs to follow his own protocol. There is no simple path forward that applies to us all, I'm afraid. And, yah, 24 years is wicked impressive!

elvismlv123 profile image
elvismlv123 in reply to chocolatelover_123

There is a an equation online to determine doubling time. I am 17 years out and my PSA has been slowing rising over that period of time. I am worried too. I am thinking of increasing my finasteride a little to see if my PSA gets lower. Initially my PSA was undetectable during treatment . It was really low at .005 and I had a prostate which I still have. Now my prostate is much smaller. But my PSA is around 3.5. As one ages PSAis allowed to go higher but I think its only if your prostate is still intact.I know if I dont take finasteride my PSA will double as it suppresses DHT and DHEA. I wouldnt worry but I would check the equation anyway and ask about a slight boost on a drug to see if the PSA goes down a little. If you have control of some sort you wont feel at the mercy of PCa.

chocolatelover_123 profile image
chocolatelover_123 in reply to elvismlv123

Thank you so much for your input, stay safe and I wish you good health!

j-o-h-n profile image
j-o-h-n

You're a sweetheart of a daughter. Never apologize here about ranting.... we love ranting... and Never say "If you don’t mind me asking, what is your PSA?" We do NOT mind when someone asks!!! You're a young genius being able to understand all the mumbo jumbo when it come to Pca. Your dear Dad is one lucky guy to have a daughter like you. Give him my regards and btw "if you don't mind me asking, how old is your Dad?" LOL🤍 (I probably asked this before but my meds make me forget).....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/19/2021 12:25 PM DST

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

I answered my own question with a bit of research. Chocolatelover_123's Dad is 61 years old. Young whippersnapper....With a daughter like her he will do very well......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/20/2021 10:57 PM DST

chocolatelover_123 profile image
chocolatelover_123 in reply to j-o-h-n

Sorry John!! I haven’t been able to keep up with all of the replies I got on this post, which I’m super grateful for. Been super busy with my dad’s health and my university classes. But yes he is 61! Will be turning 62 soon. Your comments always put a big smile on my face

catsup profile image
catsup

First let me say that you Dad must be very proud of you. Not many 21 year olds have the time and patience to spend looking after their sick parents. Good job.I was diagnosed in 2014 with PSA of 18.5 and stage 4 mets to the bones. I started on

Zoladex which was effective for 3.5 years. in 2018 Extandi was added which brought my levels to .02. june 2020 my levels started to rise until it got to .59. My ONC did a bone scan and found that some cancer cells in my hips and ribs were getting active. She sent me for radiation to zap these particular cells. Yesterday which is a month and a half later my blood work has shown my PSA has started to reverse and is heading down to .37 which I have been told is positive and should head lower in the months ahead. I have also been told that they would not start a new medication until they see levels above 2.00. They will closly monitor with monthly blood tests and radiation if needed. Your dads levels look pretty low for now and his time line of 7years since diagnosed to throw a scare into him and you . As my oncologist told me. We cannot cure cancer just give you the best and productive life we can.

So stay positive and keep a close eye on your dads numbers. i am sure your oncologist has a plan for your dad.

chocolatelover_123 profile image
chocolatelover_123 in reply to catsup

Thank you very much 💗

Olivia007 profile image
Olivia007

That’s not big of a number jump. So I would relax. If it goes high like past 5.00 he may try a new oral medication like xtandi if he hasn’t done chemotherapy he may suggest that too but at this point the PSA isn’t too high my dads went up to 12.40 then my doctor put him on a different medication and he had scans too and thank God nothing changed all remained stable. Good luck I know how it is I’m caring for my 83 year old dad and go to every doctor appointment or test.

chocolatelover_123 profile image
chocolatelover_123 in reply to Olivia007

Thank you Olivia, I hope you and your father are doing well!

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