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Posted 12/13/2014 7:27 AM (GMT 0)
My husband was diagnosed 4 yrs ago w a PSA close to 2000. His bs and ct scan showed Mets to all bones and lymphs and tumors on spine. He has run the gamut of treatments from hormone therapy to radiation to chemo. Can't recall his Gleason, but biopsy was not encouraging ...pretty much stage IV everywhere. PSA has been as low as 3 on zytiga and as high as 75. It mirrors the roller coaster of our life past 4 yrs. Dr is currently recycling trtmnts. Now on zytiga w psa 50 rising. CT and bs next week. He is feeling good, despite everything! We live in very small town but are considering travel for provenge. I am feeling alone right now as our oncologists confirmed Gary (hubby) is his longest living patient with his dx. Looking for support or advice.
Posted 12/13/2014 8:24 AM (GMT 0)
His Gleason must be 6+6 to survive 4 yrs with no symptoms in spite of extensive mets at Dx.
Chances are he will make another 4 yrs if that is the case.
Some say GS6+6 will rarely take anyone down.
I hope this is the case for you.

The anxiety from the uncertainty is a challenge for us all.
Wishing you best of luck
Posted 12/13/2014 12:20 PM (GMT 0)
So sorry that you have to be here but welcome and you have come to the right spot for support and advice. As you can see by my signature I too am here because of my husband and we have some similar stats it sounds like however we are just beginning this journey so perhaps we can support one another. We are also from a very small town, which sometime makes treatment choices tough. I come from a medical background and am still struggling with this every day. God bless you for 4 years of struggle and support with your husband.
There are amazing people on this site and I have no doubt they will be along with word of encouragement and advice. Hang in there and know that we are here.
Dawn.
Posted 12/13/2014 4:06 PM (GMT 0)
Celebrate life, hope things turns toward the better. We are in a similar situation. My dad has been through most of the protocols as well. His psa is sky rocketing but otherwise he is feeling fine. Like your oncologist, ours also trying to re challenge Zytiga that dad took 2 years ago. Can you share his experience on Zytiga a second time?
Hang in there!
Posted 12/13/2014 4:52 PM (GMT 0)
Celebrate life, your never alone in this battle when you have HW as your support or sounding board. Sorry to hear that you guys are so deep in the fight. I know we all get down from time to time. Sounds like you guys have done your research and are in the process of making plans for more fighting.

Sounds like your Dr has done some thing very right. Let us know how we can help.

Cajun Jeff
Posted 12/13/2014 5:26 PM (GMT 0)
Our experience with the second round of Zytiga for Gary has not been promising. Cabazitaxel worked well and lowered psa from 75 to 24 by round 9 and he didn't lose his hair! I'm so glad I found this forum. After four years I really needed to share with others going through this and hopefully I can offer some info on what worked and didn't for us. I wish we had tried provenge earlier, but maybe it's not too late. We have to wait to see what ct and bs looks like. I'm glad Dawn is here too!
Posted 12/13/2014 5:33 PM (GMT 0)
Hopefully it's not too late for the provenge. A couple of guys here have had it and it seems to work.

Hang in there, and let us know how it progresses,
Andrew
Posted 12/13/2014 11:08 PM (GMT 0)
Well Logo, I can speak for us Canadians. We're just too polite, eh?

Cheers, Doug
Posted 12/14/2014 2:18 AM (GMT 0)
Agree...Many guys have survived well over a decade with GL 9+ and actually have or had a good quality of life..
Posted 12/14/2014 2:49 AM (GMT 0)
Kinda like the Eric Idle character in National Lampoon European Vacation, when Chevy Chase hit Eric who was on a bicycle. I'll delete the post, its pretty much meaningless due to lack of context, other than my own.
Posted 12/14/2014 3:02 AM (GMT 0)
Celebrity life, keep us posted. Dad will be getting ct and bone next Tuesday to see where it brings us. His blood draw on friday was not positive alk phos with an uptick two times in a row the last month. Psa 1,770. I am so worried, appetite last few days has been terrible and it seems like we are heading back to where we started. Xl 184 short lived.
Posted 12/14/2014 4:03 AM (GMT 0)
winmui, how about docetaxil or cabazitaxil?? When my hubby was having no luck with hormone therapy (i don't know what XL184 is, I admit) he did well on chemo. Surprisingly his appetite and nausea improved with chemo. He did best with cabazitaxil, but hi oncologist is considering docetaxil again. His ct and bone are next week as well. I'll let you know and you let me know too.
Posted 12/22/2014 11:48 PM (GMT 0)
Celebrity life, we finally got the scans back. Bad news, liver and lungs has gotten worse. The xl 184 improved the mets but the liver and lungs has gotten much worse. So it really does come down to chemo. I am not happy with the results.
Posted 12/23/2014 2:12 AM (GMT 0)
I am glad to hear he is doing well despite the numbers going up and hoping that stays the case. The doc is obviously doing something right. I can only hope his battle continues and he soon sees single digits at the very least.

If you need to come to Atlanta for treatment or ANYTHING, you have a place here to stay. I hate the ups and downs as you know and help you in any way I can with this, be it moral support, a shoulder, a place to stay.

Pablo, don't be so sure of the gleason, I don't know of a 6 that would cause a PSA like that and mets like that at first diagnosis. This sounds pretty atypical and aggressive.

Winnmui, So sorry you got this news, especially before the holiday... I hope you find something to celebrate and be happy about.
Posted 12/23/2014 2:37 AM (GMT 0)
Thanks kukukajoo, we will try. The year has been uneventful and his health has continue to downgrade. We will see the oncologist on Friday and see where that brings us and what the chemo plan is. I feel sick to my stomache hearing the results. "The changes in the liver and lungs Outweighs whatever good we got in the bones". I Kinda had a bad feeling especially seeing him this week very weak and trouble walking again, loss of appetite etc.
Posted 12/23/2014 2:52 AM (GMT 0)
You might want to try to contact Dr Myers.
http://www.prostateforum.com/about-dr-myers.html
Posted 12/23/2014 3:10 AM (GMT 0)
Pablocito-what do you mean by GS 6+6? I believe you might have your numbers mixed up .As far as I know the gleason scale only goes to 5+5 or a combined 10 . Did you mean two scores of gleason 6 from two different samples?

Post Edited (Wings of Eagles) : 12/22/2014 8:15:46 PM (GMT-7)

Posted 12/23/2014 6:54 AM (GMT 0)
Oh winmui, I am so sorry to hear about your dad. I certainly hope he can tolerate the chemo well and start feeling better again. I hope he is not in a lot of pain as well as feeling week and no appetite. I admit that knowing my husband may face a lot of pain scares me more than anything else. I hope you can forget about the test results for a day or two and enjoy being together this holiday.
Paul, thank you so much for you kindness and support! It is so nice to have people out there that know what we are going through. Happy holidays and best wishes for 2015!
Beth and Gary
Posted 12/23/2014 12:27 PM (GMT 0)
Squirm, Thanks for the Dr Meyers link. Are you currently seeing him?

Will take that advice! Happy holidays all! I am so grateful to have folks on this forum with the support and advice. Yes, best wishes to all in 2015!
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