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209 PSA Stage IV almost 3 years ago and still undetectable THERE IS HOPE

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Posted 9/15/2017 3:59 AM (GMT 0)
Hi Battle Bros.
It has been a while since I have I have posted but I am still checking up on all of you and wish you all well.
Here I am almost 3 years into my stage 4 metastatic PC battle and based on my test results today I still remain undetectable on first line HT. Mind you that being on HT has taken a toll on me both physically and mentally but overall I am still feeling great, exercise regularly and truly grateful that I am still maintaining an undetectable PSA level and good chem labs overall.
To all newly DX stage IV and current stage IV guys, please stay strong and know that there is hope. My Dr. pretty much told me the same and mentioned that there is lots of promising research and new treatments on the horizon and to stay strong.
Stay well geop
Posted 9/15/2017 4:36 AM (GMT 0)
Great to hear from you. Glad you're doing well.

It does give hope.

Andrew
Posted 9/15/2017 6:19 AM (GMT 0)
That's such fabulous news geop. I don't post much anymore, but I really wanted to tell you congratulations and best wishes for a very lengthy stay with ADT.
Beth
Posted 9/15/2017 6:43 AM (GMT 0)
Glad you are well, thanks for sharing. Denis
Posted 9/15/2017 1:51 PM (GMT 0)
Geop,
Fantastic, wonderful to hear, Brother!
Posted 9/15/2017 4:30 PM (GMT 0)

geop said...
Hi Battle Bros.
It has been a while since I have I have posted but I am still checking up on all of you and wish you all well.
Here I am almost 3 years into my stage 4 metastatic PC battle and based on my test results today I still remain undetectable on first line HT. Mind you that being on HT has taken a toll on me both physically and mentally but overall I am still feeling great, exercise regularly and truly grateful that I am still maintaining an undetectable PSA level and good chem labs overall.
To all newly DX stage IV and current stage IV guys, please stay strong and know that there is hope. My Dr. pretty much told me the same and mentioned that there is lots of promising research and new treatments on the horizon and to stay strong.
Stay well geop

Posted 9/15/2017 6:13 PM (GMT 0)
From one battle brother to another,
Congrats on your milestone and wishing you many, many more years of great success. Take care
Posted 9/15/2017 9:00 PM (GMT 0)
Geop,
That is very,very fantastic!!! Especially since your PSA was high to start with. You are indeed living a miracle! Claim it! I am 5 years into it ,with stage 4 and have 4 spots with bone mets , but I am also undetectable as you are. Your response has been a lot stronger though, as I have been on Lupron and Zytiga for three years now.(with a current Lupron vacation for 9 months) There is great hope for all of us, brother, thanks for posting and keep rolling those zeros!!!And as always keep the Faith!

Wings aka Dan in 80 So Cal(no Irmas here, just earthquakes!)Praying for those affected!
.
Posted 9/16/2017 12:13 AM (GMT 0)
Great news, Geop.

Ride that train as long as you can, and Live Life gratefully each and every day.

Charles
Posted 9/16/2017 3:54 AM (GMT 0)
Hi Dan:
I am intrigued that you are on a 9 month Lupron vacation. Does your Doctor feel that Zytiga alone can control the beast? I ask because a Firmagon vacation would be very welcomed by me. I realize that it is highly unlikely that Casodex alone will hold off the beast however. My doctor told me that he has a patient that has Stage 4 Met cancer and has had it for 10 years now w/ a couple of spots on his spine, but is also undetectable and doing great. The spots are there but just aren't growing or causing any issues with him. I suspect he is also on Zytiga but I didn't ask. He also told me that I have surpassed the average considering that I am still on first line HT. It sure gave me some hope that's for sure because upon my initial DX around 3 years ago my Urologist at that time, who I no longer have, told me that I would be on last stage disease within 2 years max from DX. A real shmuck indeed and that is why I rushed to an Oncologist.
Let's keep it going brothers and hopefully this beast will not take us down.
Posted 9/16/2017 2:47 PM (GMT 0)
My husband and I are almost at our one year past diagnosis anniversary. To celebrate we plan to do the same as we did that first week while we waited for the biopsy results - go camping and lay under the stars holding hands and gazing up into the night heavens. Just the two of us, together.
Your post gives me hope for more starry nights together than I ever thought possible one year ago. Where there's life there's hope, right? And we have life. Thanks for taking the time to post this. Best wishes to you for many, many more years of beautiful nights and blessed days!
Posted 9/16/2017 4:45 PM (GMT 0)
Geop.
Yes, that's amazing we have similar experiences. My initial Urologist(also a real schuck) suggested I had only 3-5 years to live and he could not do much for me except Lupron. I left him in the dust! I chose an initial Oncologist at CTCA, but was initially I was informed I would probably be on Lupron indefinitely. My second Oncologist told me late last year that for me, the Zytiga alone doing the job, so a Lupron vacation was warranted. I think there are quite a few here that could post on that. It would also suppose to reduce some of the side effects from Lupron, although I barely noticed any difference. I still get the hot flashes and fatigue. Todd1963 has a spectacular story, now on Zytiga, but I understand that he has not been given the Lupron vacation, he is on Lupron for several years now. We both plan on breaking right through that 10 year mark soon!(5 more for me ..and beyond is what I plan on!)
Wings
Posted 9/17/2017 3:18 AM (GMT 0)
Bentnotbroken

It is so heartbreaking to see that in spite of your husband getting timely PSA blood work his PCP totally ignored his high PSA until it was too late. I also had a high PSA (for my Age) during my routine physicals and my PCP didn't mention a darn thing. When I missed getting a physical for about 2 1/2 years (shame on me) and finally did upon my wife's nagging was the advanced PC finally DX'd when my PSA was 209 and impossible for even the most incompetent PCP to ignore. I have also heard from many that some PCP's do not even do PSA checks on men under 60 years old unless they have had close family members who has PC. Pretty ignorant really since a PSA test only costs a few $$ and every single man 40+ years old should have one yearly in my opinion.
It looks like your husband is hitting his PC hard early which is a great thing. Can you share with us what his current status is as far as PSA, age etc.?
We are all battle Brothers here and I can not tell you how happy I, as I am sure all of us are when I read about someone who is kicking the beast's ass.
Todd, Curious Charles, Wings of Eagle and many others here are proof that we can live a long time in spite of our initial grim DX
Take care and remember we are always here for you and your husband.

geop
Posted 9/17/2017 3:19 PM (GMT 0)
Geop -

May the HT keep working!

Bobby Mac
Posted 9/17/2017 4:30 PM (GMT 0)

Hello GEOP,

I always follow your posts and I am very thankful to hear your GREAT NEWS!

Your story is filled with hope --- and also encouragement for other fellows out there who are fighting the good fight!

You've always forged ahead --- despite some tough news at your initial diagnosis.

It was four years ago now that I was diagnosed --- so just stepping into my fifth year --- I participated in a 5K prostate cancer charity event this weekend, along with others who are standing alongside all of us here on this website.

Here's to continued success in your treatments, Geop! I want to thank you for your loyalty and friendship here on the forum over time.

Handshake of friendship, from across the miles,
CYCLONE --- Iowa State University --- GO STATE!
Posted 9/17/2017 5:04 PM (GMT 0)
Cyclone
So good to hear from you as you are also truly an inspiration to me and others fighting the beast. Also very impressive and encouraging that you ran a 5K event. I used to run before diagnosis, but as per my Dr's advise, due to the bone mets, I do not run anymore. I walk and ride my bike a lot as replacement.

Stay well my friend and always good to hear from you
geop
Posted 9/18/2017 12:42 AM (GMT 0)
geop,
Thanks so much for the supportive words. There are so many kind hearted and courageous guys on this forum, all fighting the same beast.

My husband was 56 yrs old when diagnosed as "treatable but not curable Stage IV". He has had an annual physical since he joined the military at age 19. I try not to think of the "Why didn't his doctor follow up sooner" type questions. But sometimes a wee bit of anger seeps out. Lol. My husband is doing well now with a PSA of 0.23. He is currently on Lupron and Zometa. I'm thankful that he received Taxotere immediately after diagnosis. He has a form of PCa called Intraductal which tends to be more aggressive and therefore typically more advanced at the time of diagnosis. Another important reason, to your point, to have screening in men over 40.

I never knew that PCa was such a horrible disease. I never knew how much it took away from men and the women/men who love them. Yet you men are still full of vim and vigor (maybe a little vinegar too) and you fight to keep hope alive every day. Every day you are a Victor, and every day we get closer to a cure.
Posted 9/18/2017 3:31 AM (GMT 0)
Bentnotbroken

Yes indeed this %$#^&% disease sucks and does indeed take a lot from a man and his partner. Please hang in there as he may go through HT and cancer related mood swings, as I do, that he cannot always control or reason out. My wife has stuck with me for 3 years now and I have on occasion been unreasonable moody where I never really was before the PC dx and HT treatment. You are his hope and rock and with your support, love he will be fine for many years to come and yes, hopefully some day a cure will be found and we will still be around to benefit from it. Lots of drug combos out now and a load of research going on so I truly believe in my heart that the cure is only a matter of time.
Stay strong and supportive for him as I am sure you are and will continue to be.
All the best for both of you

geop
Posted 9/18/2017 3:42 AM (GMT 0)
Bentnotbroken:

You may want to question his dr why he is also not on Casodex or Zytiga to try to get his PSA down further to hopefully undetectable. Sometimes Lupron alone will not do the trick and has to be coupled with either Casodex or Zytiga as is in my case. Maybe someone more knowledgeable like Tall Allen can weigh in on this question.

geop
Posted 9/18/2017 12:16 PM (GMT 0)
geop,
Thanks! I have had the same question but didn't ask since hubby's oncologist seems so happy with where we are. I'll follow up on it.
Can't hurt to ask smile
Posted 9/18/2017 1:47 PM (GMT 0)
It is so encouraging to hear positive results as we navigate our way in this horrible journey. I am new on here, my husband Dx 6/2017 with aggressive PC. 10 Bx. positive. PCP never checked a PSA until my husband requested it and never had a DRE. To say that I m angry is an understatement even though that is something that I have to manage. With my husbands GS of 9, almost 4 wks post op Davinci, mets to lymph, bladder neck, SVI, to say we are discouraged is an understatement. Foley still in , meeting Fri , hoping to get that out. I am trying to gain as much education as I can , to be as informed as possible and I appreciate any thoughts, advice, words of wisdom. Also, I am thrilled to hear positive reports!!!
Posted 9/19/2017 5:33 AM (GMT 0)
Hi JkorourkeRN
The good news is that your husband has more than likely caught the PC time and may achieve a cure or at the least a long term survival with proper and precise treatments.
Your story reminds me of my sisters business partner who was 58 when DX even though he has had a yearly physical for 20 + years. He had to ask for a PSA test because of what happened to me. After he reviewed his past Physicals, none of them included a PSA test. His PC had spread to the bladder wall also and he had surgery to remove the prostate and extensive work to remove the PC from his bladder and rebuild the damaged tissue. He also went on RLP and Lupron for a year and he is now doing well at PSA <0.02 and hopefully cured.

A shame that so many PCP are not routinely doing a PSA check on all men 40+. Hundreds of millions in Med care costs would be saved as a result and most importantly numerous lives saved.

Stay well
geop
Posted 9/19/2017 12:29 PM (GMT 0)
Thank you for sharing. This post has given me more hope. smile
Posted 9/19/2017 1:13 PM (GMT 0)
Outstanding!
Posted 9/19/2017 5:35 PM (GMT 0)

Bentnotbroken said...
My husband and I are almost at our one year past diagnosis anniversary. To celebrate we plan to do the same as we did that first week while we waited for the biopsy results - go camping and lay under the stars holding hands and gazing up into the night heavens. Just the two of us, together.
Your post gives me hope for more starry nights together than I ever thought possible one year ago. Where there's life there's hope, right? And we have life. Thanks for taking the time to post this. Best wishes to you for many, many more years of beautiful nights and blessed days!

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