New here, diagnosed age 52, Gleason 10

[Glsn10]

Regular yearly psa test since 2006 because of family history of PC. Psa had always been near 1.0.

01/2013 psa showed slight rise to 3.2.

Inconclusive ultrasound so another psa test in July, psa up now to 9.1

08/26/2013- DRE showed a symmetrical, nontender, nodular right lobe (cT2b), Gleason score of 10 (5+5), involving all 14 cores that were examined, positive for perineural invasion.

-09/23/2013- WBS showed diffuse metastatic disease to the bones, CT scan of the abdomen and pelvis that was negative for visceral or lymph node involvement.

-09/25/2013- ADT started (Lupron)

-02/5/14- started MDV3100-09 (STRIVE): A Multicenter Phase 2, Randomized, Double-Blind, Efficacy and Safety Study of Enzalutamide vs. Bicalutamide in Men with Prostate Cancer who have Failed Androgen Deprivation Therapy.

-07/30/2014- Nov 2014 palliative Docetaxel chemotherapy (c 6)

-Clinical and radiographic progression, MRI spine showed mets,  underwent radiation /SRS to C Spine 1800 cGy in 1 fx On Dec 12, 2014 for neck pain.

-April 2015: Started on Xtandi       

March 2016: xtandi no longer working  had palliative Radiation to pelvic area and middle back for pain.

Discussed second-line chemotherapy with Cabazitaxel vs. Trials vs. AA/P and Radium-223

Favored to proceed with zytiga and Radium-223 after Radiation therapy. 

Start Radium-223 today, will hope for some longer term results.

Can't hold job due to symptoms of treatments and foggy head from constant pain meds, but feel blessed to still be here and grateful for time with wife, children and grandchildren.

[JoelT]

Sorry about how fast your cancer has progressed.  Generally, Radium-223 seems to have pretty good results for the vast majority of men, so fingers crossed that you too will have a positive experience.  Given that you are aware of the fact that some prostate cancers are family related I am sure that you have spoken with your children about their increased cancer risk, this includes the males for prostate cancer and the females for breast cancer.

Joel

[Glsn10 in reply to JoelT]

Thanks for your good thoughts, I have great support from my wife and kids along with many friends.

We can only play with the cards we are delt so I have gone forward with quality of life as my priority.

My children unfortunately are now well aware of the cancer odds.

But you can't worry and stop living so test early and be aware is my best recommendation.

[Dan59]

GLSN10, welcome to the club, I too am a gleason 10. I like your attitude and wish you the best with radium 233. I wonder if you were ever told which arm of the mdv3100 trial you were in, as I noticed the next year you were on xtandi/mdv3100

I wish you the best

Dan

[Glsn10 in reply to Dan59]

Hi Dan,

To paraphrase, any club that would have me as a member I wouldn't want to join!

I have never posted anything on any site prior to this. When I was first diagnosed I serched the Internet for as much info as I could find on Gleason 10 "club" members to try and see what I might  have to expect coming down the road. I posted here to leave a little info for someone else that might be going through the same process. I am not terribly needy although my wife and kids might argue that statement But I am a planner and I like to know what I need to get done and some realistic idea as to the timeframe I have to get it done.

I found out that I was in the bicalutamide side. We stopped the trial because my numbers weren't to bad but my bone pain increased and spread to more and more areas.

The doxetaxel worked and kept my mets where they were when I started the drug so although I wouldn't wish chemo on my worst enemy I can't bad mouth the drug.

As you can see I have run through most of the drugs with minimal success although  xtandi did work for almost a year.

I hope that the radium 223 works well for me because after this drug I figure I have a chance with immunotherapy, a couple more chemo drugs and then I will be in the lets through some s...  at the wall and we'll see what sticks territory.

I hope that you have had success with your treatments and I wish for you a great quality of life and slow progression.

P.S.

It would appear from the length of my post that I need to learn how to  write less lengthy ones.

[Dan59]

Thank You, I appreciate the kind words, and the good thought of leaving info for those that follow. I wish you the best with rad233(xofigo) and zytiga. It has been proven that one can rechallenge with taxotere/docetaxol, the doctor that proved that is Dr. Petrylak in NYC, some in this group actually have used him for a DR. My gleason 10 was confirmed by Jon Epstien at Johns Hopkins. I have done well although I am developing low back and hip pain that I am in denial of it being cancer, and I am one step before chemo.

[Glsn10 in reply to Dan59]

In our house I'm always the "realistic" glass half empty guy with my wife pointing out why the glass is actually half full so as she would say to me......not every pain has to be cancer. 

Of course, just in case, wouldn't hurt to do something fun......just in case!

[Larry3]

Wishing you the best. May God bless you and may you have many good painfree years with family and friends.

[Glsn10 in reply to Larry3]

Thank you for such kind words I can only reply that I wish for you and yours the same.

[charmander]

You my friend are my hero!!  Love the statement about "not joining any group that would have me".  Unfortunately we are glad to have you in our midst.  Wishing you continued QOL and positive attitude.  Thank you for thinking of others and posting your gleason 10 story.  

I'm an 8, castrate resistant with a level psa of 14 and 5 mets in pelvic and tailbone areas.  Each of my hip and back pains were first thought of as evidence of progression but now get quickly defined as normal aches and pains.  I'm not sure I'll do any of the chemo that is considered treatment due to the aweful side effects.

I'm a planner too and have to keep me thoughts focused on the positive things to plan rather than the thinking about the inevitable.  It is what it is and we play the cards we are dealt as you said.  I'm so glad you are here to share your wisdom and insights.

[Glsn10 in reply to charmander]

Hi charmander,

Wow, when I read your note to me you almost had me thinking I might be something special. 

I'm not! I have delt with this the best I can but from the beginning, quality of life has been my goal.  That said even the statement "QOL" is relative. We each have to decide what we are willing to do and what we will put up with in our own personal battle with this horrible cancer.

About your decision on chemo. Only you can decide if it is worth the side effects or not. My outlook has been If I can continue to travel and spend time with my family after the treatments then I'll probably do it.  For me the game changer would be if the treatments were only to extend life but could cause a permanent need for institutional nursing home type care or a colostomy bag situation then I would rather go without the treatment and to the best of my ability enjoy whatever time I have left.

Of course I reserve the right to change my mind when that time comes.

Look, no one knows what the expiration date will be for any of us.  I have had friends that were healthy when I was diagnosed and have since died of other cancers and other health issues. People that I would have never thought I would outlast are now gone. So I feel blessed to have had the time I have already had. I have been able to get some of my affaires in order, I have done some traveling, and there is nothing like spending time with my family even if the grandchildren are so young that they won't remember me I have had a blast spending time with them.

Best of luck to you.

[charmander in reply to Glsn10]

Dude you are special!!

This experience with cancer (I don't call it my cancer any more) has helped me to appreciate the now and the little things.  I concentrate on being happy and I'm no longer willing to put up with bullshit or negative people.  The things that I thought I'd do someday are now what I plan to do, like being in a demolition derby.  I feel free to be me and say what I'm feeling.  I'm hardly ever concerned with what others will think anymore.

The gold in not having my prostrate is that I feel free to be me.  At 57 I'm finally realizing some of my gifts and I appreciate who I am.  Like you I want to leave a legacy.  Leave a wake behind me so that I'll be remembered.  I used to get choked up thinking about this but am now more comfortable with the notion that my expiration date may possibly be sooner than expected.

My goal like yours is to enjoy the now with family and friends!

[Glsn10 in reply to charmander]

I like your attitude. 

Couldn't have said it any better than you just did.

Do that demolition derby! Then on to the next great idea. 

[paulofaus]

Hi (sorry I don't know your first name) welcome to the G10 club. I'm sorry that you are here, but now that you are, I think you will find it useful being here (I know I do). Much like yourself, I was Gleason10 with extensive bone mets (no visceral mets thankfully) at diagnosis in April, 2016 at age 49. I have no family history of PCa, though there is some breast cancer and I read they are like the male and female versions of the same cancer (I'm sure that's a terrible simplification).

I like your attitude and your thankfulness for every extra day you get to spend with your family. I struggle with the knowledge that this disease may take me, well before I'm ready to go and I might miss out on so much, seeing my kids grow up etc. but what can we do? I believe we should do what we can to maintain a good quality of life, while extending our lives as long as possible, using the best available medical expertise we can access. My hope and dream is that advanced Prostate cancer will become a chronic but manageable condition, like diabetes, AIDS etc. while you and I and the other members of this forum can still benefit. I think it will probably end up being a combination of agents and I think immunotherapy is a huge area for the future. I am in the middle of 6 rounds of Docetaxel at the moment. One of my concerns with using chemo, was that it may prevent other therapies working in the future, or it might exclude me from clinical trials in the future.

One thing this disease has done is made me appreciate what I have. I appreciate things more and I no longer worry about minor things. I try to stay positive and optimistic (though it can be hard at times).

Best of luck with all your challenges and keep us up to date with your progress.