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

CAdogsRus said...
Newest member signing aboard after my JHU second opinion I received today. I went from 2 4+4 cores (and 8 3+4) to 4 4+5 and 1 4+5 and 5 3+4. Full details at a new post made today. Bummer, but it is what it is.

I'll continue to take it one day at a time.

Sorry you joined. Are your Docs sending you for a scan before IMRT?

My Dx is similar to yours. I had 4 cores 4+5, 2 cores 5+4, 2 cores 4+3...saying that I would tell you that my research found that IMRT+Brachy+ADT was the best treatment for high risk PC with the best chance of cure for prostate contained high risk PC. I chose this treatment option until it was found through a uro void test showed that I would be at risk for severe SE's so I cancelled the the Brachy.

I believe that you are set up already to have this treatment and had the scans to show there is a good chance your cancer is contained. Having this up grade to G9 from G8 wouldn't change the treatment that you have already selected. The only thing that should change the treatment option would be that you found that you are metastatic at which point would cause the IMRT and Brachy to not be useful.

This is my understanding and maybe others would have better info but if it was me (and I know it isn't) I would stay the course. You have to make those decisions , but that is my 2 cents.

So, I just got my first lab work back from a blood draw seven weeks after my first 3 month Lupron shot. Labs were initially supposed to be in another four weeks (right before next RO appt), but with my second opinion from Epstein coming back at G9 (vs G8 by UCSD pathology), I was anxious to make sure the ADT was being effective.

Testosterone 3/26/18 3.77 ng/mL, 6/20/18 0.20 ng/mL
PSA 3/26/18 7.26, 6/20/18 1.73

Lupron depot injection was on 4/27/18

I know these values indicate the Lupron is having a positive effect, but I have no idea how pleased I should be with the numbers.

I have to admit I was in a good place level of concern wise when I was G8 and had made my treatment decision. But the G9 second opinion did rattle me a bit.

Because of a MyChart issue that had blocked PSA results for patient viewing for several days, I only saw the new PSA test result just now.

I'll probably message my MO on whether another Testosterone and PSA test make sense before seeing both the RO and MO in four weeks -- RO appt to get the radiation started and MO as a follow up after the first three months of Lupron. And finally, I have a Uriflow and retention test this Friday to make sure I'm ok for brachy seeds (there were urinary issues before staring Flomax ten weeks ago; that made immediate improvements so I'm thinking I'll be ok for the brachy boost.

Any thoughts on these new test results after 7 weeks of Lupron?

CAdogsRUS,

I agree with Artist Mark (above) - it looks like the Lupron is depressing the PSA quite nicely, but as one who will also soon receive his first Lupron shot, I too am a bit curious about the projected rate or slope of decline in PSA that the MO's typically hope-for from Lupron. You and I, we have chatted back and forth here a little bit before, because we share some similarities in our respective Dx's, but I can't recall whether or not you had ever been prescribed Casodex? I've been on Casodex myself now for just under 2-weeks, with Lupron soon to come, and its my understanding that MO's will often prescribe Casodex for a short (2-4 week) period, just prior to one's initial Lupron. Was that the case for you? I ask because I can't recall your exact circumstances and it doesn't appear in your signature.

In any event, Casodex alone has certainly worked for me. It has reduced my high PSA of 69 to just over 34 in less than 14-days, which I'm led to believe is a fairly impressive drop, and my RO has suggested that I continue on it for 10-14 days after my first 90-day Lupron shot, so maybe ask your MO about Casodex? Perhaps it could/would augment or enhance the rate of decline somehow?

However, that said, my impression of your own reported PSA decline is that its probably a whole lot better than the value of the numbers alone might suggest, or than you or I might think. For example, if we were to imagine the PSA decline over time in roughly the same terms as the concept of PSA 'half-life', which is essentially the inverse or reciprocal of PSA 'doubling time' (i.e., the time required to double it or halve it), your PSA value has essentially been 'halved' TWICE in just 60-days. It dropped from 7.26 to 1.73 in just under 90-days, and if I understand it correctly, the Lupron was only on-board for 60 of those 90-days. So that's a drop from 7.26 to 3.13 (1/2), followed by 3.13 down to 1.56 (yours is just slightly higher at 1.73). but that's still down nearly another 1/2), all in just 60-days of Lupron. To me, that's an awfully decent drop in absolute value and an equally decent rate of decline. In fact, if I can ever get there myself, I'll be jumping for joy!

So, I think you're in great shape going into IMRT/Brachy, and I'll be following right behind you, starting both of those same two procedures, just 60-days later (LDR-Brachy ~ 9/20/18, IMRT ~ 10/20/18).

Good luck in July and beyond, and remember to stay positive!

CAdogsRus said...
. . . As I understand it (from some other post here a while back), Cosodex is to prevent issues in distant metastasis due to the initial flair in T that occurs. Thus since MO understands my situation to be localized PCa, Casodex was not deemed required.

Ah, I see! I had not heard any of that before, but it makes perfect sense. If you inhibit the binding of T at the receptors (Casodex), without reducing the biosynthesis of T (i.e., in the absence of Lupron or something like it), it stands to reason that the circulating levels of T would rise, thereby potentially promoting distant metastasis. Just never took the time to think that one through, I guess.

I agree.... Most guys post directly to the forum in separate posts. I would like to see G9 's post here like they do in the ADT-SRT thread.

One problem (I think) is that there aren't many of us and the ones that are still here tend to be advocates to the forum as a whole. I think that we could make this group thread much more helpful to G9 guy's if we start to post directly to this thread more when it pertains to high risk issues and high risk treatment questions and experiences.

But again, I agree there could definitely be more traffic here on this thread. So If you or anyone else in the G9 crew would like to see this thread more active then it's up to us. Try it. Direct your questions here and see what happens. I will definitely respond.


Battle On Brothers!


The Artistic One - Mark

Thanks Alephnull and congrats on the report. My last PSA ( Aug 2018) 0.02. Just starting to tick up as my T level is now up to a grand total of 54.

My MO stated that because of my low initial PSA (3.42) I might have low PSA producing PC. In that case he would start to get concerned if my level gets to 1.0. I would have access to an Axumin PET scan also

Just a quick check in... another undetectable under the belt.
I've switched to 6 month checks now but still slightly stressful waiting for results.
Hope all is well with everyone. So many new names each time I check in, I don't know where to begin.

All the best, keep a positive attitude!

Artist Mark - good idea. We can create more posts here by, well, creating more posts here! There aren't a lot of us, and our concerns tend to be more technically oriented. We are often looking for the most aggressive treatment plans, and trying to gain insight on effectiveness and side effects. Sharing that among ourselves can be encouraging!

This is how the first couple of threads ran, with lots of posting here on the thread. As it popped up on the forum, we'd always quickly see that one of us had posted.

It became diluted because folks would make their first post here, and then miss some of the main forum's generalized support. So they'd be encouraged to create their own thread on the main forum, and thus no further updates here. It's confusing to post on both threads, it seems. I like to see people benefit from their own thread's visibility, especially for those seeking help like Tall Allen often provides.

Maybe if we're posting stuff by, for, about the G9/10 situations it would be good to post here. Treatment decisions, options, status updates, and so on. Intro threads and such may be better on the main forum.

Glad to see you guys doing well. I so often suggest new people visit this thread, because it can be so encouraging! Some of the initial internet search results for G9/10 cases are pretty scary, but we're doing so much better in the last few years.

@ Spouse21 I try not to think about PSA all the time. If I did, I'd want a weekly test. If hubby just started Lupron again you have to wait awhile to see how it's working. That being said, I had my PSA tested about 3 weeks after starting Lupron and again 3 weeks later after starting Zytiga. I cheated a little b/c my Uro & MO had both ordered one. Hubby can go get his PSA on his own-just pay for it if Dr. won't order it. You'll want to use the same lab.

Checking in and thanks to all the great advice and support I have received. Got my first undetectable about a month ago, now on a 3 month recheck unless something changes, I am asymptomatic and continue to hit the gym and run (well except for an ankle sprain setback ).

MO switching me to Eligard 3 month version at the recheck, Uro started me on Lupron, told they are the same thing. The ADT and Zytiga seem to be working, hoping it lasts for a good long time. Stopping Xgeva as the MO is concerned about the side effects.

Spouse21, I too look daily at all posts. I'm not saying that one should only post here as there is too much to be gleaned from everyone's experience. It is just nice to have a thread that I can go to for specific info from those that are traveling the same high risk path as I am.

I noticed that your husbands PSA at Dx was 3.32. Mine was 3.42. I haven't seen any as low as we are .It has always concerned me that I am low PSA G9, so it's good to be able to compare . There is not much info here or anywhere that I find as there aren't many Dx'ed with high risk low PSA. In my research I have found some info about low PSA high risk where there are men with even lower PSA and they are at a higher risk then us between 2.5 and 4.0 Again, still very few of us out there.Also my primary treatment is almost the same, except I did have adjuvant docetaxel.

Anyway, I appreciate your contribution to this forum also. I will follow your husbands journey closely as I have the "Redwinged One" from the start.

Amen to artist mark on making an effort to post to this thread. I check the forum daily but my worries seem disconnected from much that is discussed on main thread.

So a bit over 2 years since diagnosis. Things are winding down as my therapy options dwindle and my PSA goes up and my nodes get larger. Latest labs suggested some decreased kidney function and yeah ther is mild hydronephrosis on right one. Likely due to node pressing on ureter. Started zytiga couple weeks ago. It is a long shot since I failed on xtandi last year but had some BAT earlier this year so maybe that will set up the zytiga for me. Can’t say too much improvement of late but I am comfortable on Tylenol twice a day most of the time. Frequent “naps” in the day but sleeping well around peeing 2-3 times a night. Good energy in the mornings. Hope is more abstract now and mostly manifest in scanning for clinical trials that are nearby. T

Have started the “housecleaning “ that includes many trips to goodwill. But tomorrow we rent an rpod trailer and trek up to near Rocky Mtn np for 4 days. Wife is retired now so everyday is pretty wonderful for how much time we are together. Still making music as well so we are not in the last round yet for sure

Luck to all in the fight.
Rf