Gleason 9's

Hi Devasted1 --- no answers for you but wanted to let you know I've got you on my prayer list tonight, but let's look for 40 years.

Sheldon AKA Sleepless

Hang in there Devasted1.....

Have to have hope with all the new drugs in the works.

I have come to depend on "hope" a lot! :)

Hey, Devasted:

I am a G9 with at least two bone mets, and I feel great! No symptoms, save for the side effects of ADT3 for a year (and those are minimal), and I can look forward to many more therapies to test once I become hormone resistant, if I do. I have conferred with one G9 on this site who had ADT3 for 2 years and is two years off without a rise in his PSA.

One thing I learned from Dr. Myers, a superb PCa specialist, is that each PCa is different. Notwithstanding the Gleason score, each is also different in how fast it spreads. I had my bone mets at diagnosis, but they have not spread for one year now, and in that year, both have been irradiated with SBRT (along with the prostate bed) as part of a Study at Sunnybrook in Toronto, Canada. My PSA is bouncing around 0.1 to 0.2 now some 6 months following irradiation.

So, it is an interesting time to have PCa. Just make sure you speak with the leading PCa specalists! There is a LOT of misinformation amongst oncologists out there! And stay tuned to this blog site.

Houseboy

Hi

Dx 10/2006 G9

6 months adt2 3 yrs to bcr. after ending the 6 months adt2

6months trial avastin adt2 going on 1yr psa .02.

Bottom line going on 6 years since Dx G9 sv+ ec+. Now psa undt.

My oncologist also says everyone is different how they respond.

PT3b's like me and you have many years ahead.

Jerry L and me have a similar dx and both going strong 4 and 6 years after dx.

Best Wishes

Gerry

 

Accelerated degeneration?

As if the Gleason 9 fossa tumor gnawing at my bladder wasn't enough (THAT got radiated a couple months ago), now I have extensive bone metastasis in the ribs and spine that HURT. My bone scan last June was "clear", so this Gleason 9 monster worked fast!

I was "Provenged" starting last August, but was having rising PSA and had urinary troubles (from the prostate bed tumor resurgent) in September before getting fully "Provenged". But...my urinary system was compromised, and the bone mets must have started up about the same time (near December, 2011). So I am now SURE that the Provenge (only $93,000!!) is a "bust" for me, and I have gone on chemo Taxotere and accouterments. My back and ribs fluctuate from mild discomfort to agony, and I can JUST BARELY twist my body enough to wipe myself without screaming in agony.

A week ago I *REALLY* thought I was a goner, and SOON, what with the severe pain and knowledge of rapid spread. Having been "Taxotered", I have been given a reprieve, like a governor's grant to a patient on Death Row. But for how long??? 

 

Hi Devestated,

If you look at my signature you will see the journey that has gotten me to this point. I am currently a 37 month G9 survivor that is currently on triple blockade. My PSA is now at .005 and has been arounf there for the past 7 months. There are lots of things in the pipeline that hopefully will help us. Keep fighting the fight. As long as you wake up you haave a chance.

FIGHT ON

Hello Devastated,

9 is just a number.

Don't let it bully you, or empower it by dwelling on any of its associated implications. 

Once my husband and I came to that conclusion, our outlook and mental/emotional state changed enormously.

A number of other forum members have addressed your post very sensibly, yet with empathy for your situation. I congratulate all in this forum for the way that support is given, many times with riproaring humour, sometimes bluntly, but always as brothers-in-arms facing a common foe.

I don't often contribute unless I specifically have something to add, but I do read the posts diligently nearly every day, and I am continually amazed at people's capacity for getting through what sometimes seem to be enormous hurdles and obstacles.  I salute you all and admire your dignity in the face of adversity, your humour during potentially embarrassing incidents and your unequivical support.

Today my husband and I planted some mango trees.  We don't expect that they will bear fruit for another 5-6 years at the very earliest.  But we are both planning to be around to do the picking and eating for many years after that.

cheers

 

Thank you all for taking time to share your comments, hope, prayers and experiences with me. It means a lot to me as I go through this horrible journey with you.

Sleepless09 Thank you for your including me in your prayers. May God bless all of us as we endure this dreaded disease. i will include you and your husband in my prayers as well.

JerryL Congrats on making it to 29 months with G9. I agree with you that being diagnosed at an early age is horrible as is being diagnosed at any age.

MsWorryWart Hope is a wonderful concept and I and my family on relying on it during this trial.

ChrisR Speaking of hope, thanks for the reference to 13 years. Best of wishes with your own journey.

houseboy I hope that your 2 bone mets stay at that level. Good luck in overcoming the side effects of ADT3.

Duke68 way to go on making it to six years and being undetectable. I hope I am here posting in six years and undetectable.

David, you are the poster man for "Never give up hope". I am sorry regarding your last exam and what they found. You too are in my prayers.

Sequoiaranger I am devastated to hear the news that you have mets on your spine and rib cage and that Provenge was a bust for you. I watched my wonderful neighbor suffer for three years with mets on his ribs and hips and spine. The pain you described is horrific and I watched him suffer through it. I have had severe spinal pain due to two discs that ruptured and had free floating fragments in my spinal canal, and have three more damaged discs and lumbar facet joints that have no cartlage. What i have experienced is nothing like you have had. I am so glad to hear that chemo and accoutrements are providing you much needed relief. You too are in my prayers. I hope you have another trip planned to get away from this horrible reality. I hope you will get long term relief.

howard1 way to go on making it 37 months. I too will look forward to making that benchmark.

Yamba I hope you have many decades on enjoying the wonderful mangoes together. Thank you for your very kind words.

May God bless all of us on this PCa journey.

Devastated,

I also was pretty devastated when I found out I had G9 PCa about three years ago. And the cancer was in all of the cores sampled, ranging from 46% to 87% in each of the cores sampled.

At this time I am still alive and doing OK, but always aware of the fact that for me there is high risk for metastasis to bones and organs.

The good part about PCa, even G9, is that the way it progresses is unique to every person. And neither high Gleason grade, or velocity, is any indication of how the cancer might respond to various kinds of treatments. With hormone therapy, for example, the main issue is how androgen independent your cancer may be, not G or velocity.

San Carlos