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Gleason 9 (5+4), stage IV update #'s = 31, 25, 18, 14, 11, + my 0's!

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Prostate Cancer
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Posted 7/7/2015 6:11 AM (GMT 0)
It's been just over 2.5 years (31 months) since my Stage IV, Gleason 9 (5+4) diagnosis, 25 moths since I started my first batch of intermittent chemo that was completed over 6 months time (3 cycles of Taxotere with Prednisone, then 3 cycles of Etoposide & Cisplatin (not for the weak), 18 months since my open RP, 14 months since my thymectomy surgery, and 11 months since I started radiation to my pelvic area and my left shoulder. I have experienced undetectable PSA's since my open RP 18 months ago.
This is all good news. I have no new issues to report. My pain and ache levels are still significant but I am working hard to stay active and work on my fitness to stay strong through the battle. My left hip area has never really been relieved from pain so it continues to bother me even though the mets that were saturated into my bones have been considered resolved.
This was not an easy path to take. Actually, it was emotionally and physically demanding. It still is.
But, today I did not feel bloated for a couple hours, for the first time since my first surgery. Unfortunately, I did have body aches which I attribute to the combination Lupron and various other treatments along the way like Zometa and Xtandi... My knees swelled up while playing today with my son but a little ibuprofen and later something stronger helped to relieve some of the worst of those aches.
But it's a good day. I get my PSA results a few days after my lab poke on Thursday so I'm expecting an 18 month trend with undetectable PSA!! Not bad for an advanced late stage Gleason 9 like me!!
Posted 7/7/2015 7:43 AM (GMT 0)
Congrats! Gunner
Feel good to see fellow G 9ner good result.
All the best...stay strong & undetectable all the way.
Posted 7/7/2015 9:33 AM (GMT 0)
Keep gunnning Gunner. You are an inspiration to all G9's, and Dr. Kwon can always use some new slides to celebrate his successes and yours.
Posted 7/7/2015 11:40 AM (GMT 0)
Great news Gunner, may the good results keep coming....

Chas
Posted 7/7/2015 12:13 PM (GMT 0)
Hello Gunner,

Your medical team has pulled out the stops to get this done. I'm not sure mine would. I get the feeling it would be Lupron, Taxotere, and wait.

By chance are you being treated in the Boston area? As a G9 (T3bN1M0) I'm doing well but I want to have options should that change.

HMS
Posted 7/7/2015 12:57 PM (GMT 0)
Gunner,
You give me hope. Good for you!
Posted 7/7/2015 12:59 PM (GMT 0)
Good morning Gunner

You and your report have brought pleasure to this great day. Your attitude and accomplishments are truly inspiring to all of us. You are winning some very big battles in this war. Impressive to say the least. Hope your reports are good on Thursday.
Blessings
David
Posted 7/7/2015 3:48 PM (GMT 0)
All I can add is that your medical team is a class act.

You provided a serious challenge that they rose to meet.

I'm 12 years in, myself; but started out older and less acutely.

-------------------------------------------------------------------

Age 63 in 2015
12/02 PSA 2.9 age 51
9/03 BX/DX, Gleason 6, 4 of 12 cores
9/03 Brachytherapy
5/08 PSA nadir 1.1
12/08 PSA 1.8
2/09 BX/DX, Gleason 8, 1 of 12 cores
6/09 Hyperthermic Radiation, Hormone (short term), IMRT (10 fractions) spring 2009
10/09 PSA nadir < 0.1 10/09 through 01/12
4/12 PSA 0.2
3/14 PSA 2.9
5/14 C11 Acetate PT/CT, found 2.0 cm lymph node
5/14 Lupron/Casodex (9 months)
8/14 nadir <0.01
2/15 SBRT to node
3/15 PSA 0.02,T=0
6/15 PSA<0.015,T=105 (yippee!)
Posted 7/7/2015 5:50 PM (GMT 0)
I love to hear that, Brother Man!
Bill in MS
Posted 7/7/2015 7:13 PM (GMT 0)
Gunner - an inspirational journey!

You may have said before, but I forgot -- did you have a neuroendocrine component? Is that why you had the Etoposide/Cisplatin?

- Allen
Posted 7/7/2015 7:19 PM (GMT 0)
great report! Keep those zero's coming along.

Andrew
Posted 7/7/2015 7:40 PM (GMT 0)
Good Stuff.
Love seeing the positive news.
All the best!
Posted 7/8/2015 12:15 AM (GMT 0)
Hey Gunner,
Good to know that everything is going so well for you. Keep pulling those great numbers. Best wishes to you.
Posted 7/8/2015 12:27 AM (GMT 0)
Congratulations, Gunner. It's good to hear a good report. You're not only an inspiration to the G9 guys, but you're an inspiration to this G7 guy. I've got nothing whatsoever to complain about.

Keep up the good work and the great attitude. Sounds like it's working for you.

Jonathan
Posted 7/8/2015 3:01 AM (GMT 0)
Great going Gunner. You pretty much give multi-modal treatment a new meaning. I have followed your story because my stats have been fairly similar and I always felt that I should be throwing everything I could at the cancer. I had to change medical centers to give that approach a chance.

You're a fantastic example to other high risk guys who are wondering what to do and might be getting told that they are only eligible for HT. They don't need to settle for that.

Will keep you and your psa's in my thoughts and prayers.

Aloha

Simon
Posted 7/8/2015 4:58 AM (GMT 0)
Thanks all. I think you guys know I'm watching your posts as well and keeping tabs on your progress.

Nomar - I'll do my best to keep supplying the docs with good info to share.

NE Skier - nope, not in Boston area. I'm in Mn and treated at a local oncologist as well as a team from Mayo in Rochester.

TA - yes, I think docs suspected signs of neuroendocrine issues (based partly on original scans, some soft tissue, a fiery prostate, and a PSA that refused to go all the way to zero) and so we upgraded the chemo plan to Etoposide & Cisplatin to get ahead of it. So far so good!

Simon - yes, our paths are similar. And as I think back, my initial oncologist pretty much said he was sorry and that Casodex and Lupron was going to be used to slow things down but couldn't do much else. So glad my wife and I didn't take that as an acceptable resolution. I know that our program at Mayo was out of the box, especially the surgery, but I've passed a milestone already that was presented as a potential survival end date. That in itself makes the difficult parts of this journey worth it.

I have no intention of slowing down anytime soon, so outlasting the Lupron and other SE's are a bigger issue than the cancer itself!

Life is good.
Posted 7/8/2015 5:03 AM (GMT 0)
Gunner you have made my night. Congrats.
Posted 7/8/2015 5:44 AM (GMT 0)
Gunner, I am so thrilled to hear that you are doing so well with this approach. You are too young to take "sorry" for an answer, and I am glad you found a team that worked to get you where you are!
Beth
Posted 7/8/2015 3:21 PM (GMT 0)
Congrats, Gunner! I'm so glad to hear you're getting good results from the difficult path you've been on.
Posted 7/8/2015 4:55 PM (GMT 0)
Gunner,

Truly great news for you! And YES, an inspiration to many of your fellow brethren. So much so that Jim has an Appt in a few weeks with Dr. Kwon!

Marie and Jim
Posted 7/11/2015 10:34 AM (GMT 0)
Gunner ...

A big smile over here in Boston for you and yours. Your attitude is contagious and you're an inspiration to me. Thanks for everything.

Hope to see you in Rochester ...

Ray
Posted 7/11/2015 12:35 PM (GMT 0)
WOW What a great report. Thanks for sharing the details and thank goodness you found a dream team to treat you. I am adding this group to my list of potential docs to consult with should my primary treatment fail.

Best wishes for many more great reports.
Posted 7/11/2015 1:17 PM (GMT 0)
Gunner, your story is an example to everyone here. Not only an example of not giving up, not taking a Drs no for an answer. But an example of not letting cancer take over your life.
Guys like you and Todd are what makes this forum special, and invaluable to anyone who has to be here
Posted 7/12/2015 5:04 AM (GMT 0)
Pman - you're right. I hadn't thought much about it until this post but staying positive through the s#|+storm. In the last 2 1/2 years I experienced times when I didn't know if I was ever going to feel well again. But in the same time period I vacationed in 2 other countries and had several other trips to spend time with family and old friends. It's very important to continue to work hard at living and enjoying life through the ups and downs.
Jack - anything you need in terms of info about the docs or the Mayo facility, I'm happy to share.
Ray - right back at ya, bro. Sometimes I check in here to see how everyone is doing and it's refreshing to be inspired by good news from great people. Don't know about Rochester for sure yet, it's been a busy travel year. But I'm trying to keep options open. Would be good to see some of you post chemo guys now that we have more hair!

Also - my PSA and other lab results were posted today at my oncologist's online health care site. Still undetectable and some other things like red blood cell count have been improving lately! It feels great to be feeling good!
Posted 7/12/2015 7:52 AM (GMT 0)
Gunner--Congrats on your labs! Your attitude and guts is contagious and inspirational. All the best to you in the future.
Bill
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