The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)

Jerry L. update:

It’s been 9 years since I was diagnosed with Gleason 9 PC and like 8 years since bone mets were found. Even still, I’ve been able to go on Intermittant Hormone Therapy (IHT). Just had a scan a few days ago and all is stable. I’ll be going back on some form of therapy in the future, but have enjoyed the current break that I’m on.

I posted this in a seperate thread, but wanted to post it here as well. This is such a great thread for the higher Gleason guys. We are all in this together and that is one of the great things about this site....where we can compare war stories and report good news.

Hope you all have a Happy Thanksgiving holiday.

As an update ... hubby's PSA is starting to rise. He's been on Zytiga since August .... hoping that it will start going in the other direction soon.

Redwing57 said...
This newsletter from Us TOO has an article about immunotherapy for aggressive prostate cancer cases. They're discussing specific genetic issues, that could lead to better application of immunotherapies. It also talks about the differences in survival based on these differences.

The study referenced in this article might have been discussed here before, but this article discusses it in an easy-to-comprehend way.

Us TOO Hotsheet November 2018

Article title (page 4): Immunotherapy Could Offer Hope for Some Men with Aggressive Prostate Cancers

Redwing ... the link to it doesn't work. Says error .... fyi

3 years post-news of my Gleason 9 score. So far so good. Starting to see a little creep up in PSA level from .015 to.09. Going to get a retest and then on to the urologist for next steps.

G9 checking in. My PSA continues to rise slowly. 3.2 last month and now waiting for result . I still feel ok. Could do without the man boobs and sore nipples but I can't complain as I am now 8 years into this. Still on Xtandi and hopefully something new will be available when it fails. Fight on Brothers!

HappyRick said...
Recently had an episode with blood and clots in my urine. Clots became large and hard to pass over the weekend so I went to ER. After tests and discussion with on-call Uro, they stated that blood in urine with PCa happens and to stay hydrated to lessen the size of the clots. Return if I can't pass one and they will do a catheter. Wondering if any other G9's with a prostate have had something similar and it this is the new normal? Seeing my Uro next week. Symptoms have disappeared at this point.

I have not had any blood clots or blood in my urine as of yet. Hopefully the more experienced guys will have some more answers for you.

I have a question for you G9 guys. How many have had slow T rise post treatment and how would that effect PSA rise. I've always wondered how things are monitored for someone that had a low PSA high gleason score at Dx. There just aren't many here with that situation that I can see. Having had high volume G9 PC and a low 3.42 PSA at diagnosis tells me that my PC doesn't produce much PSA, so I worry that my # to BCR may be different, (as opposed to a guy that had a higher PSA at Dx.) How would one know? I guess the only thing to do is wait for symptoms.

This is the one thing goes through my head that I haven't had a good answer for. Maybe there isn't an answer. It makes the waiting much more difficult for me for some reason.

I just need to be grateful to be where I'm at in this moment .

My PSA stands at 0.04 and my T is 64 one year post release. Next test is in a couple weeks. Maybe just getting PSA test jitters.


Battle On Brothers!


Mark

Artist Mark said...
I have a question for you G9 guys. How many have had slow T rise post treatment and how would that effect PSA rise. I've always wondered how things are monitored for someone that had a low PSA high gleason score at Dx. There just aren't many here with that situation that I can see. Having had high volume G9 PC and a low 3.42 PSA at diagnosis tells me that my PC doesn't produce much PSA, so I worry that my # to BCR may be different, (as opposed to a guy that had a higher PSA at Dx.) How would one know? I guess the only thing to do is wait for symptoms.

This is the one thing goes through my head that I haven't had a good answer for. Maybe there isn't an answer. It makes the waiting much more difficult for me for some reason.

I just need to be grateful to be where I'm at in this moment .

My PSA stands at 0.04 and my T is 64 one year post release. Next test is in a couple weeks. Maybe just getting PSA test jitters.


Battle On Brothers!


Mark

Mark my T has stayed at 0.1 now for about 18 months with no climbing.

Artist Mark - amen, brother. I have the same thoughts. I've searched Dr. Google so much all the links come back purple, that I've looked at them already. I've searched BCR vs Gleason score endlessly, with no success. As far as I can see, there just aren't studies to show the BCR PSA levels vs Gleason score. It's been a long time, but there was a study showing PSA production for various Gleason cell types. I gotta dig for that one...

So cases like mine, that's all G9, show a relatively low PSA (say 5.2), but in reality with a lower G score that would be more like 15 or more.

Man, it took me a while to find this thread! I remembered JNF and I talking about this a long time ago.

Do Gleason 9s not make much PSA?

from JNF's June 17, 2013 entry:
Benign prostate cells give off about .066 PSA per cubic centimeter of mass. Cancer gives off much more PSA per cc of mass and in declining order. Gleason 6 gives about 4 PSA per cc, G7 is about 3 PSA per cc, G8 about 2 PSA per cc, G9 about 1 PSA per cc and G10 less than 1 PSA per cc. These are my roundings of the averages from Strum's work in his book.

So, if the Phoenix definition of recurrence is 2 ng/dl above the nadir level after RT, is that true for ALL types of PCa? Or, would G9 cases be "recurring" at 1/3 to 1/4 of that? It's not clear that this was even a factor in the establishment of the Phoenix criterion.

The pattern is probably more important. In other words, if you have a low PSA but with a steady increase, with a reasonably short doubling time, it would be worth more investigation. Cancer cell growth is based on cells dividing, hence the doubling time. If the pattern looks like that, then that may be important (the log of that trend would be linear, with a doubling time of less than a year or so).

If the PSA quantity is low but wandering around, then don't be so concerned. My MO said he's treating a patient, not a number!

So after 4.5 years of being undetected my PSA in July was 0.07. It has slowly climbed to .2 as of end of November. My oncologist here in Arizona has put me on Dutasteride (Avodart) @ 0.5mg 1/day. He explained that it is normally not used for prostate cancer but has been shown to slow recurring PCa at low levels. I am to see him in 3 months and hopefully there will not be much of a PSA rise. I'm kind of happy with this approach since I thought I'd have to go back on Lupron immediately and that is about the last thing I want to do again. It sucked the life (or the enjoyment of life) right out of me. But I think it will be in my future so I must get mentally prepared. Knowing it is back is sobering but at least there are many treatments to manage it for hopefully a long time.
Thanks to all who contribute to this forum.
Don

Don, Hawaii, thanks for the updates. Seems a few of us may be dealing with a slow rise! Mine's up and down, with a general upward drift. Glad to see some restraint I guess, since the next steps for us tend to be kind of unpleasant. I know I'm not keen about going back on HT, ever.

We're doing another phase of AS, in a sense. Watch it, but don't do anything until it's really going to be useful.

Thanks for the update RF. May cabazitaxel be the one that provides great relief.