PSA Doubling then?

[3putt]

Good afternoon fellow warriors. After almost 5 years of riding the Zytiga, prednisone & lupron train my PSA has been doubling every 3 months. I got my labs done yesterday in preparation for my Tuesday Cleveland Clinic oncologist visit. Low and behold my PSA dropped by 20% from July numbers. I couldn’t be happier today had the Browns run a super bowl. As they have about the same chance of me beating this monster…Anywho, just curious if any of you have experienced the same PSA swing and how long after were you able to stay under 1.00? Here’s hoping everyone of you enjoy an awesome fall season, Oh yeah, GO BROWNS!!!

[EdBacon]

What are the PSA numbers?

It would also be helpfull to know your whole treatment history, don't see it in your profile.

[3putt in reply to EdBacon]

stage 4 with Mets to pelvic area. Gleason 8. PSA 12. Started on Zytiga with a side of prednisone along with lupron. PSA dropped to undetectable within 6 months of treatment. Been that way until this time last year when it started doubling. Last was .52 and now dropped to .43.

[EdBacon in reply to 3putt]

Great that your PSA is still so low.

Changes of 20% at these numbers aren't meaningful for stage 4 guys. There's a difference between measureable and meaningful. The difference between .52 and .43 is noise really and I wouldn't try to read anything into it. You don't think about PSA doubling until it gets up to at least 2.

My doctor said he had a guy on Zytiga that had a PSA of around 1 for years and I also know someone who was on Xtandi for 5 years with a PSA of around 1.

So enjoy your still very low PSA and try to relax.

[Grouser in reply to EdBacon]

Hi Ed Bacon our doctor said something different . He said it is the percent of change not the number. Hmmm

[Benkaymel in reply to Grouser]

It's true that rate of change of PSA is important but I think what Ed was saying was that while the numbers are so low, results can bounce around a bit and you can only really see a trend once it reaches 2 and above.

[EdBacon in reply to Benkaymel]

Thanks.

Also to be clear, I am talking about guys with stage 4. It's a different situation if you just had RP and your PSA should be zero. Any movement there is significant since you are looking for biochemical recurrence.

But if you are stage 4, these small movements in the decimals are nothing but anxiety producing. Sure, an upward trend is not good in general, but you aren't go to do anything until it gets above 2 anyway.

[CSHobie in reply to Grouser]

Sorry, this Dr doesn't know the principle of maths. PSA going from 0.01 to 0.1 is a 10 fold increase, wow 1000%. It means nothing.

PSA going from 10 to 100 is also 1000% increase, That is something!

[EdBacon in reply to CSHobie]

At one of my appointments, My doctor told me he was about to get a patient that fired his previous doctor for not doing anything about his miniscule PSA movement. We both chuckled about it, but he looked concerned about how he was going to deal with it.

[nobaday in reply to 3putt]

consider trying with a side of 0.5mg dexamethasone instead of 5 to 20mg prednisone. Could extend d Zytiga further. Search the switch posts for more info.

[anonymoose2 in reply to 3putt]

Is your doctor concerned about your bone health after being on the meds for so long? My bones really took a hit being on meds regarding 4 years. Good numbers by the way.

[3putt in reply to anonymoose2]

that’s one of the questions for tomorrow. Like so many of our pc brotherhood I workout at least an hour day doing aerobics, gigong and an assortment of exercises to maintain what muscle tone I have left after 5 years of these meds. I’d love a vacation from this regiment but not sure how likely that is. He’s one of those don’t fix it if ain’t broken types…

[mrscruffy]

Kind of like you I have been on Lupron/Zytiga for 6years and 4 months. My PSA was doubling and got to ,89. I introduced Ostarine and it dropped immediately and is now down to .20. My MO and i were getting ready to discuss further steps to take. That has been put on hold

[3putt in reply to mrscruffy]

interesting. What led you in that direction?

Also, congrats on your 6 year plus run!

[mrscruffy in reply to 3putt]

My personal trainer uses it herself as well as some of her clients. Made me get ok from MO first and he is good with it

[Benkaymel in reply to mrscruffy]

Hadn't heard of Ostarine till now but looking at its qualities it seems ideal for us on HT - increases muscle mass and bone strength, reduces body fat, good for joints and appears to have no negative SEs. I might give it a try myself.

[mrscruffy in reply to Benkaymel]

It also suppresses Testosterone, SE I know about is lowers HDL and in mega doses can be tough on liver, I screen monthly and have only seen drop in HDL but comes right back during off cycle

[CarlosBrasil in reply to mrscruffy]

I started to try it (Ostariny) 10 mg/day, although MO didn´t support me. Do you mind in sharing for how much time are you using, and what cycle are you following (on/off) ? Thank you.

[mrscruffy in reply to CarlosBrasil]

Ya my MO is a damn genius, he knew about Ostarine and specific testing and studies as well as where they were done. He can do that with most drugs. Anyways, I have experimented with different doses and cycles. The one that works best for me is 15mg for 6 weeks, then 4 weeks off. I assume everyone is different so you may have to play with it a bit

[Shooter1]

Great treatment results and good run... At that reading I wouldn't get to excited.. Mine on the other hand isn't so good. 21.4 two months ago and 80.9 last month.. test Friday to see where it is now. PSMA scan Tuesday to see if I quality for Lu-177 treatments.

[EdBacon in reply to Shooter1]

My situation is similar to yours. My PSA hit 12 back in August and we did the PSMA scan. I have PSMA activity, but my doctor said he needs a little more time to get LU-177. I decided to go with Cabazitaxel in the meantime. It was an easy decision for me because I was having quite a bit of pain. Felt I had to move, rather than be on hold.

[KocoPr in reply to EdBacon]

so sorry to hear about your pain Ed. Hope you get that Lu-177

[EdBacon in reply to KocoPr]

Thanks. Luckily, the chemotherapy is working better than any of the pain meds I was using. My pain did start coming back at the end of the last cycle, but just a few days after infusion, I'm completely pain free again. Holding off the beast as long as I can.

[Andy1569 in reply to EdBacon]

Glad to hear that your pain level is better!!

Fight On Ed!

[Fightinghard in reply to Shooter1]

good luck on the scan results. I hope you can qualify for the LU

[KocoPr in reply to Shooter1]

good luck on PSMA scan shooter

[Shooter1]

I've been fortunate with pain. Only some minor pain before radiation to sitz bones, none now. I also considered Cabazitaxel , but with neuropathy in both hands and feet, I have been very leary ( I know, old word) of trying another Taxel treatment.

[Fiddler2004]

Awesome news!

[pakb]

My husband is 5 years in to stage 4 gleason 9 and has never been below 1.0. He is at 1.4 currently. Last two labs have been 1.4. Scans look good though- mets all quiet excet one on T4 lit a bit Dec '21 so he had one spot radiation to it and scans March '22 showed improvement. His oncology team goes by PSA trend over 3 labs plus yearly scans- not just PSA.

[OldGuysRule]

God bless 3 putt!

[NecessarilySo]

I've been tracking my PSA fsince 2008 so I can look at it regarding doubling time. When i have had Lupron, my PSA promptly falls to <.1, which means that it is essentially fed by testosterone. For the past two years I have been on Lupron continuously, with injections every 90 days. Consequently, my PSA has flatlined at <.1 for the past two years. Previously I was on intermittent Lupron injections and after the Lupron shots my PSA regularly increased (after 90 days) roughly doubling every 45 days. PSA I consider a rough measure of the quantity of prostate cells in the body. PSA increases uncontrollably when prostate cancer cells divide, thereby doubling, one cell becoming two. Your 90 day doubling time might mean your immune system is twice as good as mine, or possibly you have a different type of cancer than me. When my PSA was rising, I managed to lower it twice, although marginally lower, and temporarily. I was trying different strategies, basically lycopene intake, V8 juice, but nothing seemed to prevent that monster from growing, other than Lupron, i.e. testosterone reduction. Overall, my take is that Lupron slows the cell-division rate, allowing the immune system to kill the cancer cells faster than they can reproduce.

[reb77]

Ennjoy the Brown-Charger game this weekend with a couple of gunslingers at QB.

[bglendi53]

Glad to here the great results. I however, am not that fortunate. My PSA has exploded since going on Zytiga and prednisone on July 1st. At that time my PSA was 33, after 30 days it dropped to 24. I thought finally, something is actually working. WRONG! The next PSA in August was 92, then up to 120 in September. I too am going to the Cleveland Clinic, but they don't seem too concerned if you ask me. Now I have to do another Bone and CT Scan in a couple of weeks after my insurance rejected the PSMA-Pet.

[Hidden in reply to bglendi53]

Yeah, insurance required another Bone and CT scan before authorizing Axumin scan. Seemed like a waste of money.

[DaveBSD]

Hopefully I can ask this question in this area of the forum. When I was diagnosed my PSA was around 27. I received an Eligard shot and at that time my PSA was around 31. A few weeks later I was put on Zytiga and after about five weeks on that my PSA was down to 0.3, a drop of slightly more than 99%. Is that a normal rate of decline, faster than normal, or slower than normal? I assume - and hope - that my next PSA test will be even lower. I've been following the recommendations in How to Starve Cancer so I'm hoping I can get my PSA down to undetectable levels, at least for a few years.

[EdBacon in reply to DaveBSD]

According to my doctor, a fast and deep PSA response is a good sign for long-term effectiveness of Zytiga. I had a similar fast and deep response down to undetectable. When I saw that, I said to my doctor, "That's good, I'm hoping to get at least a year out of this." He said, "No, I'd day at least 2 years based on your response." I got over 4 years.

[DaveBSD in reply to EdBacon]

Excellent, and I'm hoping to stretch it beyond two years! Here's an interesting thing: Although the mets were all on the right side, per the radiologist at least, I've been having minor pain mostly in the left side of my groin and across the lower part of my belly, sometimes extending down a little bit on the left. About a week or so ago I dove deep into the supplement world mentioned in How to Starve Cancer and those minor pains are gone. If nothing else, the anti-inflammatory effects of the supplements are at work. The author had cervical cancer and then later breast cancer, and her prognosis was just a few weeks or months. That was 20 or 30 years ago and she's still around with I believe no evidence of the cancer. The research she did apparently paid off in her case - and hopefully it'll pay off in mine.