With advanced, active, G-9 PC, PSA doubling time 30-40 days, how high can the PSA number go and the patient still be alive ? I'm at 2200 now.. There must be some upper limit..
How High Can it Go ??: With advanced... - Advanced Prostate...
How High Can it Go ??
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Fairwind
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How are you feeling?
There are many grades of Pca. Some patients can have very few cancer cells and produce a lot of PSA. Another patient can have a lot of cancer cells and have a low PSA.
I seem to recollect people talking about far higher levels on this forum.
Have you had scans done since you began the LU 177? What do they show?
One guy I knew had a PSA of about 10,000. I don't know how accurate the test is at such high levels. It is a biomarker of progression, not the progression itself. Some prostate cancers put out more, some less.
Are you doing any treatment now? Is your doctor giving you any treatment options?
I have not had any treatment except ADT (Lupron) for 6 weeks..I get my FIRST Lu-177 infusion this Friday. I sure hope it knocks it down and gets me back in remission..It's just running wild now.. It took 6 weeks to plow through the politics of the "Vision" trial and actually have treatment scheduled... How do I feel ?? Not TOO bad, little or no appetite, losing weight, (which is a GOOD thing !, No pain..Most / All of my mets are bone mets.. But I'm not my old self..Tired, ass dragging all the time..My latest blood work, done today, was not to bad. No glaring abnormalities except for the PSA...Wish me luck....:)
in reply to Fairwind
Wishing you the best in your treatments.
You said you only have bone mets. I was wondering if you've done Xofigo or might consider it.
Fairwind in reply to
Yes, the R-223 will be next if the Lu-177 disappoints and I'm able to do it..
in reply to Fairwind
Hope it goes really well for you with the LU-177.
Be mindful that doing Lu-177 may preclude you from doing R-223. That is what I was told by Dr. Sartor. Check with your doc.
Ed
I have heard allusions that R-223 may preclude a person from doing Lu-177 also. That puts a lot of us in a weiner twister. I will be approved for R-223 long before Lu-177 is approved and becomes commonplace. Refuse R-223 and hope for Lu-177 that may not even work? Is the light at the end of the tunnel a fire? Not sure of any of this. Just whispers I've heard.
"Weiner twister"!?! In what part of our world is this an actual everyday familiar phrase? Did you grow up there? Ha. Ha.
As for tunnels, I've also jokingly been advised to consider that sometimes that light at the end of a tunnel might be an on-coming train!
As for whispers, I must admit that I almost always do what the voices in my head tell me to do. Ha. Ha. (It helps to have several voices from which to select.)
We all need some lighter thoughts in our head from time to time to balance out the other stuff that gets us down.
Good Luck to all on your treatments, whatever they may be!
Charles
May the Lu-177 knock it on the head! One more day until you can start. Best of luck.
The appetite suppression is a big concern, this is what cancer does to you. Eat brother, eat, but eat super healthy and only greens for now especially green juices and do lots of detox protocols. No one likes detox but it is a game changer when you have that level of cancer burden. Coffee enemas best but epson salt baths and sweating from workout also helpful.
I had PSA of 4000 at DX. After 1 dose of Lupron/Casodex and 23 months of Lupron/Zytiga/Prednisone I have only seen non-increasing PSA (monthy lab tests). Currently at PSA of 0.02, so keep on fighting!
I was at 10,009 at DX in late 2015. Since then, the lowest was 4. At 940 now.
As TA said some put out alot some little. I'm very little.. From my MO appointment this past Monday we conferenced with my other MO at UCSF. 4 months ago my PSA was .002. Two months ago .006. My next is August 5th. They both will be concerned if its .012! Where most see ADT failure in high PSA my MO's don't have that aspect with me to work with. My lungs scans happen every 3-4 months. Pretty difficult to determine my failure.
Hi Michael, I read your contribution with interest, I started off with a PSA of 150, during the 5 years of different treatments, I have never had a reading as low as 0.12.
I have adopted the attitude that as long as I am below 5.0 I should be okay for a while.
I hope that the doctors can get yours back to the level that is okay for you.
Best regards.
Phil
My PSA was 1386 at diagnosis last Nov, it came down pretty quickly when the treatment started. It was 0.18 on my last test.
I wonder when the ADT stops working will my PSA go crazy high again and what it all actually means to my prognosis. I'll be following this thread with interest.
It's a good question that I feel compelled to ask my MO next week.
There is only a small correlation between the seriousness of the cancer and the PSA level.
Some of the most dangerous prostate cancers metastase early and fast and end up everywhere without giving much indication that they are there while others just sit in the prostate pumping out PSA and growing slowly.
In my opinion a low PSA with other signs of tumour progression is the worst of both worlds, it is getting on with growing and invasion and not wasting time making PSA.
PSA is completely useless to a prostate cancer cell as far as I can see, it is the cancer equivalent of thumb twiddling!
Exactly....psa 12 at dx..gleason 9...ductal...bone met.....now lupron for ever.....
"There is only a small correlation between the seriousness of the cancer and the PSA level"
I took it as because I have Mets to every bone in my Skeleton, I assumed the two came together. i.e. Hi PSA and extensive Mets.
There's no limit luv it all depends on your own body and how long it can keep fighting just take each day that comes and get on with the things you want to do that's what my hubby did xx good luck
High Psa makers with less cancer low than low Psa makers and not knowing why other than leakedge, inflammation and aggressive Gleason leaves a lot to be desired as biomarker for Pc before showing up on scan
My husbands never was higher than 75 but he developed bones Mets.
there is nothing toxic about PSA. It is simply a marker of prostate cell activity. I would have to question the worth of continuing to monitor PSA if know it leads to great psychic distress.
in reply to dadzone43
No, it is a marker of prostate cancer cell activity unless I am mistaken. That's why it goes down when ADT is suppressing cancer cell activity, assuming that the cancer is not castrate resistant.
dadzone43 in reply to
Maybe this is an apples & oranges situation: PSA is present and measurable from the prostate cells in normal males without cancer. HIGH PSA is a marker for abnormal activity from several sources including infection and cancer My point was more to address the obsessing over that number with over-monitoring and worrying at every little blip. It is a _number_.
I know a guy who was at 19,000! Ready to die then went to an alternative clinic and did 19 sessions of IPT low dose chemo along with other therapies over a 8 month period. He is alive and well and his PSA under 1000 now.
PSA is just a number, get it out of your head and you will live long. Strongly advise you consider alternative options to restore strength to your body and enjoy your time. They are less toxic too.
Wow, guys, thanks for all the posts and replies.!! I feel better already !
Fairwind, wishing you the very best with LU 177! I had not realized that you had not started it. Someone mentioned R-223 and acceptance into the Vision Trial. My husband had R-223 prior to his acceptance into the Trial. I think there is a time period break that they want between that treatment and LU 177. He was asked to drop Xtandi while a participate in the trial.
Thanks so much for reply to Fairwind. We all wish him well. So R-223 and Lu-177 MAY be workable. Dropping Xtandi for trial with Lu-177 I can see, although outside of trial I think I have seen some say they have continued with Xtandi. ?? Correct me if I'm wrong. Talk about Alice in Wonderland. Enjoy your evening. I am now about to embark on a mission to stock my fridge up with ice cream products. 2 scoops of everything. It will be 105 degrees plus today and no end in sight. (Dairy is supposedly bad for prostate cancer _ _ _ victims, warriors, patients, pretty pissed off people, and etc. Fill in the blank. ) I'm going to have my damned ice cream, so call me pretty pissed off. Enjoy.
youtube.com/watch?v=KbrSWbu...
Good Luck, Good Health and Goo Humor.
j-o-h-n Thursday 07/25/2019 7:55 PM DST
"Supposedly" is the key word. I continue to eat eggs, cheese, butter, curd, ice cream (high fat only and in moderation, because of blood sugar problems).
The PSA number is more correlated to how many cancer cells are being killed, rather than a count of cancer cells - but more to kill gives a higher kill rate. So a higher PSA can be a good thing! It can be misleading when a treatment raises the PSA and is condemned for "not working" if looked at in the short term. Then the PSA produced by the cancer cell deaths has a half-life of about 2 and a half days, so the "kill spike" will take a few days to settle back down again. The other side of this coin is a low PSA after a treatment can simply mean your immune system has been trashed and cannot kill the cancer any more.
I think you are going to be fine. If that PSA number has not got you bed-ridden, you are blessed with a tough body and good immune system that will keep you going for years. Be patient - these things all move slowly. Good luck on your journey!
May your Wind always be Fair.... and your FIRST Lu-177 infusion blow you PSA to smithereens.
Good Luck, Good Health and Goo Humor.
j-o-h-n Thursday 07/25/2019 7:50 PM DST
Again, thanks everyone....Tomorrows my big day..
Hi Fairwind, great name it's almost as bad as Lettuce, that was my wife's idea 
I live a long way from you, so I guess that you have already had your " Big Day ", all your brothers out there are willing you to get better.
Let's all pray, that Fairwind turns into Fairweather. ( I now have to watch for slugs AS WELL !!! )
All the best.
Phil
The depressing thing is that it is not a marker for prostate cell activity but a surrogate for prostate cell activity but it is very easily measurable so it becomes the straw in the wind that doctors and patients cling to.
Patients excusably because they are not professionals, doctors less so because they should know how poor a measure of what is going on that it is.
Every doctor should be forced to read the following before opining on PSA results and trends.
Thanks for that link Georges.
I know a man from our local support group who has a PSA of over 12,000.
He is still active and appears to be doing well in spite of his count.
He looks fine although he is slim in build.
He tells me he has been 'hi' for a few years and is not under any form of treatment.
I have no idea what that means (his particular circumstances) but he is certainly not panicked and takes it all in stride.
I'm certainly NOT making this up.
Quite amazing that 'Gary' guy .....
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