The Gleason 9 Crew -- Part 2, continued.

The latest studies have found a survival benefit if Docetaxel (Chemo) is started BEFORE you become hormone refractory..It seems to extend the time period before patients become hormone refractory by a considerable amount...

Just a quick update before I start my day. I'm 4 treatments down and 41 to go with my rt. So far so good. The techs seem pretty careful when setting me up on the table. My lower back is handling that better than I thought it would. Still fatigued some and drive is about zero after starting adt.

Also changed my shift and set my treatment time a couple hours into it. I'm only 10 minutes away so all I have to do is keep remembering the time so I don't miss it.

I have a 40 mile drive after work really hope se's don't interfere with that. I know at least one member admitted to being concerned with driving after getting a few weeks in to rt.

Short term memory ioss also faulty at best as well.

Determination is good and have been shifting alot of my attention to getting out on a pontoon boat we bought. It has been a great way to re-direct my focus from all the *what ifs* to more positive things.

Also the chemo conversation is good info because thats one of my what if thoughts about how to proceed if things go (further) south.

Updating this thread with my status today. I posted this in its own thread, but copying it here for those who read this particular thread. Good news is good news!

redwing57 said...
Today was a terrific day. Let me share good news, to encourage those facing rather worrisome diagnoses.

I just saw my MO today, blood draw, the first status of of my recovery phase. Two months after the expiration of my last 4 month Lupron, and after stopping Casodex, the end of 3 long years of hormone therapy, during and after IGRT radiation therapy. A long road, indeed.

Drumroll..... PSA undetectable, and testosterone 132! That's testosterone over halfway to normal (250) in only two months! I am more than happy, more than excited, more than encouraged. You've all listened to my venting, my angst, my speculations, my cynicism about testosterone recovery on this forum. My hope was that my relative youth in this arena would help my T recovery. Maybe it will!

The happy scenario, PSA staying undetectable, testosterone rising, is HAPPENING. I've been waiting 3 years hoping this would happen. Maybe it will continue, maybe not, but I'm expecting it to and I'm doing the happy dance today. I was going to go back to work after the appointment, but we went out for a nice steak dinner instead to celebrate! We enjoyed a beautiful, happy day.

My dear G9 crew friends, NEVER give up hope (you can see from my signature there wasn't a lot to celebrate in my diagnosis). It's a long road, but from a G9 5+4, good news can happen. We celebrate when we can, right?!

Woo hoo! Drinks all around!

CONGRATULATIONS Redwing!!!!!!!!!!!!!!!

If my next PSA(two weeks) comes back undetectable I too will start my vacation.

Continued good luck to you!!!!!!!!!!!!

Lots of things are going to happen fairly quickly..Check in with your insurance company and make sure they are on board with whatever your plans are. Be sure any treatment provider gets pre-approval before you authorize treatment. Ask what your co-pays will be...You have probably not talked with a Medical Oncologist yet..You should talk to a Radiation Oncologist too...Virginia Mason looks like a good one stop shop. They have a well regarded PC program...

Gleason 9 is not hopeless. Frequently, it responds very well to treatment. But it's a whole different ball game than the G-6 and G-7 guys face. Since we have the most aggressive form of prostate cancer, we get the most aggressive treatment available..If you have not read Dr. Pat Walsh's book, "Surviving Prostate Cancer" you should put that on your "to do" list....

Alephnull,

Congratulations on those excellent figures!
.

Continued from above
With scans that followed I was diagnosed with advanced metastatic prostate cancer in June 2015; I have cancer lesions on my spine T12-T11, left ischial ramus, left pubic ramus, and eighth rib bones. I am now on Lupron and finished with 6 cycles of Taxotere. The doctors (Oncologist and Urologist) tell me it’s not curable and I will be in treatment the rest of my life, which they don’t know how long my survival might be. I teach math and am still teaching every day and don’t feel that bad or have many side effects except I get tired quicker since starting hormone and chemo. My chemo was over in November 2015; my PSA is now (.3).

3/17/2015 181.7
4/15/2015 203.81
5/6/2015

6/16/2015 18.55
7/15/2015 4
8/7/2015 1.5
8/28/2015 0.9
9/18/2015 0.6
10/9/2015 0.7
10/30/2015 0.5
12/11/2015 0.6
1/15/2016 0.4
2/26/2016 0.3
3/24/2016 0.3
4/29/2016 0.3

Larry

Hi Larry. I added you to the illustrious roster (1st page of this thread) of our least popular chapter of the least popular club no one would want to join!

What you've no doubt already found is there are lots of G9 guys here, most still doing well even with some advanced situations. This disease, even at this level, can be managed pretty well for a long time with modern treatments. Hang in there!

Hormone therapy really made me feel tired. I was on it for 3 years, ending in March. I'm feeling better, but still nowhere near 100%. You've done well getting the chemo up front; the CHAARTED study really supported doing that.

And I agree with Jerry L., don't chase the numbers for cure, survival, and so on. You'll most likely freak yourself out, and you don't need to do that. Our G9 population is so small the studies don't do a very good job of detailing our results. The doctors are just unable to predict the course of a specific person's disease. They try, they use averages, but every person's disease appears to be unique with virtually unpredictable responses for a specific person. Perhaps most notable is our own forum's Todd1963, given a year or so at diagnosis, yet 10 years later is living large with an undetectable PSA!

We're here for you. Ask, vent, whatever. All the best to you.

Jerry

Thanks Jerry and Redwing57
Before I discovered this web site I was feeling like I might be the only guy around that has g9 pc with mets. But it’s good to find a group that can relate.
Larry

Mike2420 said...
Peter,

I was added to the Gleason 9 Crew in January, 2015 by Redwing57. I went dark for a little while but want to join in here. I don't see my name on the Roster. I guess I qualify for either the 4+5 or the 5+4. Can you add me?

- Mike

Hey Mike - you're on the illustrious 5+4 group list, ordered by DX date. I added the link to your original thread, too.

How are you doing? Always good to hear from our Crew members!

Welcome to HW and the G9 club, Larry. Sorry you ended up here, but it is a good place to have discovered under the circumstances. There are a lot of guys here with similar stats, and ISU cyclone comes to mind, as he is also a teacher.
He will surely send you a post if you start your own thread announcing yourself as a new member of G9 club.
Best wishes to you sir. Thank you for continuing to be there for your students despite this ordeal.
Beth n Gary

Casper319, hope you don't mind. I thought it useful to put your recent thread post here.

For those interested, here's a link for Casper319's latest thread:
www.healingwell.com/community/default.aspx?r=q&f=35&m=3657951

Casper319 said...
Haven't posted in a long time...thought I'd send an update.

As you can see by my profile, I've done IMRT, HT for last 5 years, Xofigo for 9 cycles, and 1 year of taxotere. My Insurance qualified me for Provenge but by then I was on Narcotics for bone pain and I didn't qualify. Ive also had spot radiation to the back and hip. I also had Zytiga which worked great for 13 months and also Xtandi which didn't really do much for me.

In December, the cancer ate through my left femur and caused it to break in half so I had surgery to emplace a pin/rod through the inside of the bone down to the knee. Still on 1 crutch trying to walk normal again.

Just last month...my Dr. decided to test me for a DNA test to see if I had a BRCA II Gene and sure enough...I came up positive for it. Ive also been on Xgeva for 3 years but had to stop because I had a small hole in my mouth down to the bone root so my dentist had me stop that which my Med. Onc. agreed.

Once I found out I was BRCA II...my Dr. put me on a chemo. used for Ovarian cancer called Lynparza (Olaparib) Side effects are a little rougher than taxotere.....more Nausea and weakness. But after just 3 weeks of it....my PSA went from a 1097 to a 333! Does this sound legit? I haven't seen my Dr. yet but I get my PSA/Blood work results online. I see him once a week right now because of the fact I was allergic to Taxotere and had to be given extra pre drugs to control that...and the new chemo is a pill form which I take at home. I hope like heck this is for real but that much of a drop in 3 weeks makes me wonder if a mistake was not made....anyways I see him this Thursday so I will see what he says. Chris

Age:54 Diagnosed: April 2011, Age 50..
Original PSA Level 92......Gleason: 9
Treatment: IMRT..2 Aug, 2011, 45 days
Lupron...4 years continuously now.
PSA: May 2013...381, started Zytiga. Bones Mets widespread.
Zytiga stopped working...now on Xtandi, Lupron, Xgeva and
another 6 rounds of Xofigo (Radium 223) as part of a study.
Xtandi stopped working..ended Xofigo and now on chemo...
New PSA 51
Post Edited (Casper319) : 6/27/2016 2:29:37 PM (GMT-6)

Break-

Woooo hoooo. Awesome. Go celebrate and have a great weekend.

Jerry L.