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A Message of Hope for Us High Gleasons

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Posted 8/9/2014 9:59 PM (GMT 0)
I want to offer hope to those with Gleason 8/9 and 10 by sharing that I was given five years at the time of dx. In a matter of months, I will be at the five year mark and hopefully will still be non-detectable as I currently am.

I express appreciation to all my doctors, nurses, researchers, pharmaceutical companies and to my loved ones for getting me to this point. I also give major credit to my faith.

I haven't posted in a long time but talking with my dear friend Appleseed (who is another G9) we thought it would be a good idea to let others with high grade PCa that have been recently diagnosed or who are in the early stages that there is hope (when the clouds are as dark and gloomy as they can be) when you first hear of your extremely unfortunate high grade PCa.

Best wishes to all of us that are fighting this hideous disease.
Posted 8/9/2014 11:11 PM (GMT 0)
Good to hear from you and as a Gleason 8 I just passed my five year mark. I have to hang on to hope for as long as I can.
Michael
Posted 8/10/2014 12:28 AM (GMT 0)
I think any doctor who gives a Gleason 9 or 8 five years to live is a poor doctor unless the disease has already metastasized.
Posted 8/10/2014 12:39 AM (GMT 0)
Thanks from a fellow G9-er.

LupronJim
Posted 8/10/2014 1:21 AM (GMT 0)
Great post. Great message. Great results. The key you mention is the mets. Pre-mets a lot of this is manageable for the long term. Even with mets, there is a lot that can be done for most of us for a very long time.
Posted 8/10/2014 2:07 AM (GMT 0)
Great post. Congrats on the continued non-detectable!

-Gedman
Posted 8/10/2014 10:19 PM (GMT 0)
Thank you for the hope!
Posted 8/11/2014 4:52 PM (GMT 0)
Excellent post. I need this today.
Posted 8/11/2014 5:55 PM (GMT 0)
congrats Devastated. Let me add that I am also a G9 going on 51/2 years. My last PSA which was at the end of July was <0.1. I am on my second ADT vacation going on 3 months. The beast can be tamed with a great support system(family) great doctors and an attitude of not giving up. It doesn't hurt that we get some help from the lord above. Keep fighting.

FIGHT ON

Posted 8/11/2014 7:44 PM (GMT 0)

howard l said...
congrats Devastated. Let me add that I am also a G9 going on 51/2 years. My last PSA which was at the end of July was <0.1. I am on my second ADT vacation going on 3 months. The beast can be tamed with a great support system(family) great doctors and an attitude of not giving up. It doesn't hurt that we get some help from the lord above. Keep fighting.
FIGHT ON

Howard, glad you chimed in - you're one of the inspirations here! On our roster of the G9 crew, you are the second "oldest" on the 5+4 list. There are only 1/2 dozen or so guys on that list from before 2011, so it's great to hear from you. It gives me a little pause as a 5+4 when I look at that list and see the distribution of diagnosis dates. But, most of those on the list are still doing pretty well.

Jerry
Posted 8/12/2014 12:36 AM (GMT 0)
Awesome!!! Your story does indeed offer hope. Thanks for sharing...
Posted 5/31/2015 10:47 AM (GMT 0)
I came across this thread and it's really a great message of hope.
Need this as husband just diagnosed as G9, t4 with one metastases to pelvic bone and some suspicious nodules in lungs...
Posted 5/31/2015 12:27 PM (GMT 0)
I'm happy to hear you are still with us! I look forward to a good result on your upcoming PSA. But, even if it has risen a bit, you appear to still be a good ways from PC doing you in! Or maybe even still a good distance even from mets. Yay!
Posted 5/31/2015 1:18 PM (GMT 0)
Thanks for the terrific hopeful post! I can't help but feel grateful for you guys who have come before me and are so willing to share your experiences.
Posted 5/31/2015 1:31 PM (GMT 0)
Angsty,

May I suggest you speak with your husband's oncologist about docetaxel sooner rather than later?
Search for the CHAARTED study results about chemo early in treatment...

Lisa
Posted 5/31/2015 2:23 PM (GMT 0)

Devasted1 said...
I want to offer hope to those with Gleason 8/9 and 10 by sharing that I was given five years at the time of dx. In a matter of months, I will be at the five year mark and hopefully will still be non-detectable as I currently am.

I express appreciation to all my doctors, nurses, researchers, pharmaceutical companies and to my loved ones for getting me to this point. I also give major credit to my faith.

I haven't posted in a long time but talking with my dear friend Appleseed (who is another G9) we thought it would be a good idea to let others with high grade PCa that have been recently diagnosed or who are in the early stages that there is hope (when the clouds are as dark and gloomy as they can be) when you first hear of your extremely unfortunate high grade PCa.

Best wishes to all of us that are fighting this hideous disease.

Good stuff "Devasted1" and how is your quality of life 5 years later?
Posted 5/31/2015 2:26 PM (GMT 0)
@Devastated, great post, thanks on behalf of everyone, from G6 to G10, its uplifting to hear stories like yours.
Posted 5/31/2015 2:55 PM (GMT 0)
Hi Lisa,
Thanks for your advice. We actually asked to be considered for early chemo but were told:
1) we should wait first to see how well he responds to Lupron
2) that early chemo might not be suitable for us because the detailed study showed that the highest benefits were for widespread metastases (ie more than 5 sites) whereas we have one metastases to pelvic bone and some suspicious (but unproven) nodules in lungs...

We are seeing another oncologist in a few days for second opinion so will see what he says!
Posted 5/31/2015 4:22 PM (GMT 0)
Thanks for the ray of hope. I often ponder just how much time I have.
Posted 5/31/2015 4:57 PM (GMT 0)
Thanks for the post and the hope, I too plan on defeating the odds and being around for years to come.

Ed
Posted 5/31/2015 6:31 PM (GMT 0)
A G9 diagnosis is a tough thing to hear...hearing that you have mets is just as bad...and then you fight...
Posted 5/31/2015 7:33 PM (GMT 0)

Jerry L. said...
A G9 diagnosis is a tough thing to hear...hearing that you have mets is just as bad...and then you fight...

I would think that hearing you have mets would be well beyond a G9 dx.
Posted 5/31/2015 7:50 PM (GMT 0)
Fox,

They were both equally upsetting news for me. But in both instances my doctors and I responded back with aggressive treatment(s) and worked towards a goal of remission, which this last time I've been able to enjoy for nearly 3 years.
Posted 5/31/2015 8:14 PM (GMT 0)
It was all the same for me....mets, G9, Dx, Rx, etc.
I have to agree that aggressive treatment has been rewarded with aggressive response. I expect to be here still fighting in another 5 years. Actually, it would be even better if I didn't have to fight but I'll take what I can get.💪🏼
Posted 5/31/2015 9:15 PM (GMT 0)
Great report! To a long life...
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