The Gleason 9 Crew - Welcome and how ya doin'?

Northfoot, welcome. Sorry about your diagnosis, and I hope there may be info in this thread that may be useful to you even now. It is sure great to hear from you, it's very encouraging to see our longer-term G9s doing well!

Jerry, the concept of "PSA leak" vs Gleason score is explored a fair bit in this article:
http://www.lef.org/protocols/cancer/prostate_cancer_08.htm

It doesn't specifically address "why" the PSA leak is lower in the higher score cells. I suppose it's possible they still respond to treatments like other prostate cells and just don't produce much PSA. The corrupted cellular machinery of those cells seems like it could cause rather unpredictable behavior; perhaps that's why the responses to treatments are so variable.

Here's another link to a similar discussion, right here on HW (that you and I participated in last June, how about that?). Maybe there's more in there about why high score cells may make less PSA?
https://www.healingwell.com/community/default.aspx?f=35&m=2766661

I´m scared of my recent (5/13) DX of Pca. , learned because bone pain, while I was in gout treatment.
My onc. ( Doc) Proposal for next moth therapy is chemo. My PSA was 150 at first Dx., after HT descend dramatically –and fortunately- to 0.27, and 8 months after is rising to 3,11. (I show my scores)
For patients in advanced PCa,castration resistant, according biologists and medical practitioners, the most encouraging news come from cell therapy.
We can see overall the Stem cells treatments or autologous “vaccines” are promising, but of scarce results by now, specially in metastatic condition.
I live in Europe, and Estipuleucel-T still inapplicable, at least in Spain.
My goal–shared for the majority of this forum- is extend my life with quality of life as many years as possible.
I know, reading some post, the tumours have unpredictable behaviour.There are so different responses as individuals.
So I would like learn some experiences of people of this “crew” in similar position, and I would be very grateful if let´s me know about it.
Chemo theraphy , as far as I know, weaken the organism. In this circumstances , can the cell therapies (existing or futures :vaccines, stem cells, etc.) be effectives?

Fidelio

Age: 68
Dx PCa 5/13 – PSA 150 –Mets. Bone / 4
Gleason -- 4+5 (9)
HT, ZOLADEX & CASODEX
7/13 -- 2- months post treatment PSA 0.27, 11/13 PSA 0,33, 1/14 PSA 1,28 LAST 23/1/14 PSA 3,11.
DIET :mediterranean: vegetables, fruits, blue fish, olive oil, 1 litle glass of red wine, and green tea.
Avoid red meat, greasy meals and milky products.

Well I thought it was time to add my story to the G9 Club:

In the fall of 2012, I began noticing hip pain during exercise. I even made a couple trips to the ER for the discomfort. Saw an orthopedic specialist who did an x-Ray. Nothing noted, said potentially an inguinal hernia. Went on to life as usual, with the pain.

After a 5 mile treadmill run in January, 2013 (I was 46), I noticed a complete stream of blood in my urine. I went to ER next day. ER did a urinalysis, then sent me for an MRI. 2 weeks of tests and scans resulted in diagnosis of Stage 4 Geason 9 PCa with bone mets.

Was lucky to be referred to a urologist focusing on working with young guys with advanced disease. Began Firmagon & Casodex. Bone mets began to respond quickly but moved to more aggressive treatment in June 2013. Did 3 rounds of Taxotere. Bone mets noted as being resolved but still had prostate and lymph node involvement. Did 2 months of Firmagon/Casodex. Did 3 rounds of etoposide & cisplatin. Back to 2 more months of Casodex & Lupron and then did open RRP in January 2014.

Expect to be on hormone therapy going forward but looking for positive results from surgery.

Happy to read of the success of other G9's and will post my own. Love the attitudes - you guys are tough dudes.

I wouldn't kick yourself too hard alephnull...I waited until 50 too. Wish I did a PSA at 40 but the Army does them at 50 and I had never heard of one until I had one of 92. I think we all wish we did some things differently early on in life.

Being a new member of this esteemed group I won't have a lot to offer until after surgery which takes place on the 19th of this month. I am quite interested in this GS 9 low PSA syndrome and will endeavour to see what I can find on it. Stay tuned my story picks up next week. The basics, really all I know now are below.
Cheers, Doug

Redheadskier here for my computer-challenged husband Frank, whom I love despite his lack of said skill.

Thought Frank was G8 but a relook at slides have upgraded him to G9 (4+5). It doesn't really matter though as he has mets in lumbar spine and in his pelvis bilaterally. He started bicalutamide about ten days ago and will receive his first shot of Lupron Tuesday and the Zometa infusion. Also, having a PET scan next Friday to look for further disease...

This has moved very fast for us, diagnosis was 2/27/14 and here we are. Frank is not doing very well psychologically at the moment. How do I tell the difference between "normal" reactions to this diagnosis and "abnormal" ie. seek help with his depression? He has been a very pragmatic, hard-working, plan for the future
man and this has hit him hard.

Anyway, I hope a wife is welcome in the G9 club <sigh> Lisa aka redheadskier

Welcome?????? Doug and Lisa.

Lisa - you and I are in the exact same spot. Signatures looks very very similar (although we are about 1 1/2 years farther in) and I too have a technology challenged guy in my life. He was pretty devastated at dx.

This is the hardest part of your journey. I remember the shock and the inability to catch our breath. Trust me when I tell you that it gets easier. 1 1/2 years later, life is pretty much the same. We are having fun and laughing and socializing. The HT is a bit of a pain but it is certainly manageable. We plan to continue on this path for years and years and years.

Nancy

Nancy, Doug and Bill,

Thanks for your welcome;) I sure hope it gets easier from here...and Doug, will be thinking of you during your surgery.

Lisa

Moonlitnight, I recognize you from the Inspire forum...glad you found me here. Remember when Eric complimented your username? well, I agree, so beautiful.

Well, it has been quite a day. Frank 1st infusion of zoledrenic acid and first shot of leuprolide acetate. Boy, we are such rookies, didn't really know what to expect: blood draw for creatinine level then 4 hours in the infusion wing of the hospital. I don't think we were really prepared to be surrounded by some really sick people, lots of bald heads, one lady that had a crisis while being infused, what a reality check and very upsetting to my husband told Frank "we popped our cherry" today to get a laugh! I'm SO glad I went with. So, it's serious now folks, and today drove home that point.

humbly, Lisa

Casper319 said...
I wouldn't kick yourself too hard alephnull...I waited until 50 too. Wish I did a PSA at 40 but the Army does them at 50 and I had never heard of one until I had one of 92. I think we all wish we did some things differently early on in life.

For sure, I knew too much supposedly, and it hurt me bad. My PSA had gone up to 4.1 from just under 2 over about a 10 year period. But, I knew I had lots of reason for a high PSA, what with a 30 year history of prostatitis coming and going, and I knew I had BPH( 87 gms as it turns out!). And besides, that PSA of 4 also had a free PSA of 23%, and I knew PCa's were more associated with much lower %. And I knew that most Bxs were negative but could cause significant problems of their own. And I knew the controversy about if you should even get a PSA because they lead to so much harmful over treatment, and how most men will die with PCa and not from it, but they might be harmed from treatment they really did not need. Etc, etc, ad infinitum, ad nauseum. So I ended up nearly killing myself, and the future is still dangerous.(of course, the future is always uncertain no matter what, so)

So I took lot's of supposedly prostate healthy supplements and put off another PSA. Until I decided I wanted some testosterone therapy, which of course pretty much requires a PSA. My general guy says a I have an enlarged but otherwise normal feeling Prostate. We discuss all the PSA controversy, he agrees it is controversial but he tends to recommend them because his father(or FIL) died of PCa. So I get er done.

Boy am I shocked when the result comes back 9.1, a little over a double in about 2 1/2 years or so. So it takes me about 3 weeks to get to the Urologist, and my general guy calls me in 10 days of Cipro just in case prostatitis is causing the rise, due to my history. The Uro gets another PSA, and I nearly fall out when it is not lower, but instead has gone up to 10.9, 1.8 points in a few weeks! Believe it or not, the Uro tells me not to panic, I have a little time. With my large prostate, he is not so much concerned about the number, but with the rise, if it was him, he would have the Bx. But he didn't push me. I opt for the Bx with huge reservations. He does the Bx, tells me again my prostate size could easily account for all of that PSA, not to worry too as we wait over thanksgiving for good news.

He leaves a message that I need to come in to discuss the findings, and I can tell by his voice that it is not good. 5 out of 12 positive, 1 is a G9 plus 1 PNI. Next thing you know, 4 wks ago I am at Vanderbilt getting the robot with lymph node dissection. Post op path showed G9, either in or at the edge of the seminal vesicle, lymph nodes clear, (margins? not sure). He feels I have a "good", but obviously not great, chance of a cure as he cut wide and "thinks" he probably got it all. We will monitor PSAs closely before deciding if I need any more treatment.

So here I am 4 weeks post op still recovering. My mind has gone wild since that 1st high PSA, as I am sure is common with my new brothers in the G9 club. I get a lot of help reading all of your stories!

I thought this was interesting:
http://cancerres.aacrjournals.org/content/73/16/5163.abstract

I read something else also but can't find it. Any way, maybe G9s are born that way, rather than a G6 growing into a G9 or 10 if given enough time? I asked this to the resident who discharged me the morning after my RALP, he had no idea. Then I stumbled onto some stuff by accident.

JC, you've had quite a ride, my sympathies for all you've endured. I added you to the roster, as one of the few 5+4 subgroup, and welcome you in a way because you're also one of the earliest on the list. It's always encouraging to see "long timers" on the forum, and especially with one of the most challenging situations.

Someone else on here had a G7 before surgery, only to find G9 on pathology. That really sux, and must have been quite shocking. Our forum brother Todd1967 has had really good results with Provenge as it seems you have as well. It may even help future treatments be more effective as it seems to turbocharge your immune system.

All the best, fellow warrior!

Us G9s are on the wilder roller coaster of emotions and it can be pretty rough at times. But like the girl on St Judes advertisement says, "You HAVE to fight" "someday they will find a cure and it will be all over". may that day come soon.