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37th month undetectable on Zytiga !

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Posted 12/17/2017 2:27 AM (GMT 0)
All,
I just returned from CTCA with results of my latest blood test. PSA=<0.06 once again for the 37th month since November 2014. I am truly blessed to have this early Christmas present. My Doctor once again declared "what are you doing here anyway?" and told me I was his star patient. That is pretty good since my old Urologist had told me in October 2012 my dire prognosis that with my 4 bone metastases I may not live another 3 to 5 years. Well I guess I am now a dead man, ...still walking..and talking and posting and boasting. And hoping all with advanced disease get a "healing well" as I like that phrase.

Of course we know(or are told) that with advanced disease, one day I'll loose that < less than sign. Cancer activity can become aggressive and spike up strongly and suddenly, so we need to monitor any abnormality closely. I am learning that other blood test levels are possibly more important that that dreaded ol PSA. My AST and ALT liver function levels remain normal as are my phosphate and calcium levels. Really the only low values were Hemocrit and Red Blood Cell Count, slightly anemic at 3.7 It has hovered just below 4 .0 for the past five years now.

My Onc Doctor is more concerned right now with my high triglycerides of 424 . My GP has me taking Atorvastatin and Fenofibrate(TriCOR) and a new diet to reign me in. Always need more exercise and to eat a better diet. So really, I still have a ways to go to be a star patient, but working on it.

As always, Keep the faith, keep hope alive, and have a very Happy new year to come.
Wings aka Dan in smokey So Cal
Posted 12/17/2017 4:57 AM (GMT 0)
Great post Wings - congrats on an outstanding result! We hope this ensures you enjoy the end of yet another year with a spring in your step (a very well earned spring!).
All the very best
Jaybee&GG
Posted 12/17/2017 5:49 AM (GMT 0)
Wings,
Congrats on your latest test results. As for exercise, I've been using combination rowing machine / recumbent bicycle for the last few months and avoiding snacks and second helpings and have lost nearly 20 pounds. I find this more effective than a gym membership or a fad diet. I just crank away for an hour five or six days a week while listening to Pandora or NPR on ear buds while soaking through a T shirt.
Posted 12/17/2017 5:58 AM (GMT 0)
Behemond.
Thanks for the advice, I 'll try it!
Wings aka Dan

Post Edited (Wings of Eagles) : 12/18/2017 1:06:54 PM (GMT-7)

Posted 12/17/2017 6:49 AM (GMT 0)
WOE -
It looks like you are poised to break records for Zytiga response - I love to hear this!
Posted 12/17/2017 10:03 AM (GMT 0)
Allen,
Thanks much, I think Todd is at 51 months and there are others out there, I'm hoping we all become record breakers!
WOE aka Dan the Old Man with a Plan

Post Edited (Wings of Eagles) : 12/17/2017 8:58:58 AM (GMT-7)

Posted 12/17/2017 12:53 PM (GMT 0)
Merry Christmas, indeed. And here is to many more.
Posted 12/17/2017 9:13 PM (GMT 0)
I don't really know what my PSA means at this point. Dr says everything looks good but there is so much info online that I am confused. Diagnosed 6 months ago with PSA 26, 11/12 biopsy cores >60% Gleason score 9. No apparent metastasis on bone scan, MRI or fine needle aspiration of suspicious lymph node. Possible SV involvement. Started Zytiga and DEGARALIX for 30 days, then switched to Lupron and Zytiga. After first 30 days PSA dropped to .90, second 30 days to .30, last 30 days to .20. Plan is to stay on Zytiga and Lupron for a total of 6 months and then have surgery. Maybe RT after that if necessary. Dr says he is "very pleased" but it's hard for me to translate that into where am I at this point. I guess PSA doesn't mean much when on ADT except that it's going in the right direction
Posted 12/18/2017 4:06 AM (GMT 0)
I have just completed 49 months on Zytiga with Lupron with undetectable PSA. Very fortunate since I had a Gleason 4+5 and RP in August 2009. Good lord is taking care of me. The Old Sailor.
Posted 12/18/2017 8:17 AM (GMT 0)
WOE
Great update.
I've got a question about Zytiga. Do you have side effects? I ask because I'm on Lupron and Zytiga and I have body aches that seem to have increased since I started Zytiga. I just started getting some treatment/rehab for the lymph edema in my thigh and pubic area so I am hoping that will give some relief. I think my aches usually start in that area from the bones and the inflamed areas around them and then it just spreads to my entire body if it goes unchecked (with ice or pain meds).
I have been on either Firmagon or Lupron for about 5 years so I do expect the hot flashes and other issues related to these treatments. I was a little surprised that these issues got worse after starting Zytiga.
Good news is it seems to be working. But I'm just trying to figure out how to deal with it long term, like you!
Thank you!
BB
Posted 12/18/2017 9:35 PM (GMT 0)
Great result, congrats! Happy to hear that these new meds are really working!
Posted 12/19/2017 12:58 PM (GMT 0)
Congratulations on your excellent response to Zytiga! When it works, it works wonders. Wishing you many, many more years of great results.

Post Edited (Almost a 10) : 12/19/2017 2:32:18 PM (GMT-7)

Posted 12/19/2017 3:21 PM (GMT 0)
Brother Dan,
Amazing, wonderful, fantastic, and a very Merry Christmas gift for you and Rose.
I have been on Zytiga now for 51 months with continued undetectable results. I next see my oncologist in March so month 55 is in the windshield.

Side effects are par for the course but no worse than Lupron alone. I would love to know the longest stretch that anyone has been on Zytiga. I also wonder if some day I will grow a 3rd eye due to long term use. Merry Christmas my friend. Todd
Posted 12/19/2017 5:54 PM (GMT 0)
Todd
I too am interested in other long termers, not so much the third eye!!!
Merry Christmas and Happy new Year to you and your family!
Post another Christmas tune on You tube for us all to enjoy!
(Sorry about that last Seattle Seahawk bashing by the LA Rams, every team has their off days)
I know that you keep the Faith, Brother
Wings aka Dan in So Cal shocked
Posted 12/19/2017 6:18 PM (GMT 0)
Dan,

Reading your good news about your long term success made my day. Take care and keep up the good results!
Posted 12/19/2017 6:22 PM (GMT 0)
Great news!

Bobby Mac
Posted 12/27/2017 10:44 PM (GMT 0)

Hello WINGS OF EAGLES,

That's great news, and a testament of hope as to the positive impact ZYTIGA has had for you.

I just received my 30th monthly bottle of ZYTIGA ... day by day, it has continued to help me.

As a way to mark my progress, I have saved all those empty ZYTIGA bottles ... it started on a whim, when there were just two or three empty bottles ... but now I have 30 bottles lined up on a shelf ... it makes me grateful for the new breakthrough medications which have emerged in the past few years ... medications and treatments that have helped so many of our brothers here on this forum ...

Thanks for your continued comradeship, fellowship, and friendship, here on Healing Well!

Blessed NEW YEAR to you and yours!
CYCLONE ~ Iowa State University
Posted 2/9/2018 2:10 AM (GMT 0)
Does anyone have thoughts on whether I should start up again on just Lupron following a Lupron holiday or add the Zytiga and Prednisone? My PSA is back up to about 10 after getting my last 3 month Lupron shot in May 2017. I also wondered if it would be just as effective to do just Lupron now and then when it fails I could start the zytiga and prednisone then?

Also, do people usually need to get radiation to their chest to prevent man boobs? That's what the doc told me last year.

Lastly, is it better to take 10 mg or 5mg of prednisone daily?

thanks,
George
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