Any Gleason 10, advanced metastatic, castrate resistant survivors out there??? Please give me some hope!!

Seeking hope for my 76yr old dad that has advanced metastatic prostate cancer. Need to know if there is hope for him. My dad was diagnosed November 2017 with stage 4 metastatic prostate cancer, PSA 64, Gleason 10, confirmed "superscan" which basically means he had every bone lit up on the scan. He was immediately put on Lupron, Zytiga, and Prednisone. It was like a miracle! He gained his weight back, he has been feeling great, follow up bone scans showed no active disease, has great energy, only side effects he's experienced is some hot flashes--that's it! I was ecstatic!! Things could not have been going better until the past 2 PSA's. He got down to a .2, then 6wks later it was .6, then 6wks after that we found out this week it is at a 2. Oncologist is saying he feels it may be castrate-resistant and his talking about Taxotere. However the most alarming thing for me is that he has already told us we have about 12months. What?! My dad looks and feels amazing--how can this be?? Any hope will be greatly appreciated!! I lost my mom 3yrs ago to terminal cancer and I am terrified of losing my dad.

[Schwah]

First this site is full of living people who were told they’d be dead years ago. Your next step is you find a top notch Facilty and oncologist that specializes in prostate cancer near where you live . Where are you guys ? This group of men and women will direct you to the best place. Still lots of options out there. Way too early to throw in the towel.

Schwah.

[Hidden in reply to Schwah]

Thank you so much for your reply Schwah! We are in Oklahoma City. The medical oncologists who we are seeing is one of the best and many people come from all over to see him, but he is a medonc and isn’t specialized in prostate but he is up to date on most recent research.

[Hidden in reply to Hidden]

Do you know of anyone’s PSA that has plummeted so quickly and had such amazing results only for the PSA to start rising so quickly again? Is there a possibility that it could start trending back down or stabilizing? Does that happen?

[Hidden in reply to Hidden]

Get a Mo that specializes in Prostate cancer, asap.

[Hidden]

I have been dead for two years, ran 5 miles in 80 degree heat this morning. I'm 68. Consider getting a second opinion, maybe a different MO.

[Hidden in reply to Hidden]

Thank you for your reply! I pray you have many, many more runs in the heat! Blessings to you and thank you for giving me hope.

[Dan59]

Hello, Welcome to the group. I was dxed stage 4, Gleason 10, with widespread metastatic disease ,bpsa 148, In 2006. I am in my 13th year. Never had a psa below 3 since. Those statistics are very old. It has been a long road, I have had really no pain, and enjoyed every year. You can clickon my picture to read my bio. I wish you the best.

Dan

[Hidden in reply to Dan59]

Thank you so much Dan59!! My dad is active and happy. It was just so shocking when he said 12months. Did your PSA ever fluctuate up and down on hormone therapy?

[Dan59 in reply to Hidden]

My psa did fluctuate from test to test, it is the general direction over a period of time that is important.

[Hidden in reply to Dan59]

Just read your bio. Thank you so much for giving me hope and many blessings to you always for continued health and here’s to a very long happy and healthy life!

[MyDad76]

Oh how I can relate to you! My dad is also 76 and I have lost my mom only a year and a half ago to pancreatic cancer. The thought of also losing my dad and going through waste syndrom again terrifies me. Never in a million years had I thought that I will face all this in my thirties.

[Hidden in reply to MyDad76]

Hi MyDad76!!! I am so sorry you are in this position also. It is TERRIFYING! I am so fearful. I watched my mom deteriorate and frankly I don’t know if I can go through that again. I am very very close to my dad. I have been filled will anxiety and having issues coping with this latest news. Please feel free to message me anytime. Unfortunately we have a connection that I wouldn’t wish in anyone. Many blessings to you and your dad!! May God bless you both.

[MyDad76 in reply to Hidden]

I also experience anxiety, specially last week! I will take a weak off work to pull myself together. I know I need to be strong to fight for him and with him but it is hard when your so hurt by the developments that you yourself would need someone to take care of you. To make the situation worse I'm an only child. I wish nothing but the best for you and your dad. Lets stay in touch!

[Hidden in reply to MyDad76]

Yes let’s do! I feel like I have been cursed with both parents having such aggressive cancers. What are the chances?!! Also I have been through it myself. I was diagnosed with stage 3 bc at 29!! I am 44 and a survivor which also has its issues. I have a lot of survivors guilt. Why do some people beat this and some don’t?! It haunts me.

[Tall_Allen]

Wow! With a really great response like that to Zytiga, I can't see why he is predicting 12 months. In the CHAARTED trial of early use of docetaxel, the median overall survival was 58 months. I wouldn't expect it to be less than that in men who got early Zytiga.

[Hidden in reply to Tall_Allen]

I feel the same way! That whole 12 month thing has got me upset and anxious. Thank you for your reply!

[caretkr in reply to Hidden]

Wish all the luck and good response for his treatment. My dad was also diagnosed at stage 4, Gleason 9. Medical Onco said we can only target 2-3 years survival and I just changed our onco after 1st visit and it was a good decision. With so many new treatments and options,the statistics are certainly different than what was 4-5years back and we hang on to that hope. My father that multiple aggressive treatments(can read in bio) and still fighting it out.its been little over 2 years since diagnosis and we wish long years ahead. God bless you.

[Hidden in reply to caretkr]

Thank you for your reply! Many blessings to you and your dad. Thank you for the encouragement. I hope he gets many many more years! ❤️

[dadeb]

Same boat here. It’s really tough to take esp when it’s your dad. I know all about the anxiety and fear. My dads MO said 24-36 months 8 years ago. They cannot predict how much time you’ll have, esp with all the new treatments available. I’ve found really great support and info here when I thought we had no other options. Hang in there!

[Hidden in reply to dadeb]

I love to hear stories like this. 8yrs!! That is wonderful! May he continue to have many many more!!

[Jvaughan0]

Dont see Gleason scores and doctor predictions as events to pencil in on a calendar. What we think we see in that bleak future will completely fill every box between now and "then" with doom and gloom. Death comes to us all on its own schedule; waiting for its footsteps will drown out the harmonious potential of each moment of being alive.

[Hidden in reply to Jvaughan0]

Wise words. My rational mind knows this. My irrational fears take over. Thank you for the reminder.

[vandy69]

Good Saturday Morning Hopeseeker,

I have been in this battle for almost six years (please see bio for complete treatment history).

Although I was younger at diagnosis (65), there are more treatment options now available for your Dad. My initial estimate was 3 years and now it is almost 6, even with mets in liver.

You must treat aggressive cancer aggressively, managed by a Med Onc who specializes in PCa. Quality of care matters.

Best wishes. Never Give In.

Mark, Atlanta

[Hidden in reply to vandy69]

Thank you and God bless you!

These stories have given me hope and have helped my anxiety so much. Thank you and may you continue to beat this!!

[j-o-h-n]

12 months? I think he/she meant 12 years... If doctors could predict the future they wouldn't be doctors, they would orbuculum Scryers and filthy rich from lotto winnings.

Good Luck and Good Health.

j-o-h-n Saturday 07/07/2018 11:48 AM EDT

[Hidden in reply to j-o-h-n]

Thank you so much! This is very uplifting.

[Hidden]

Thank you Charles! I worry so much because he is a Gleason 10 in every core and his scan was awful, it was so lit up-there were too many mets to count. He has been feeling so good and looking good! I was so disheartened with the oncologist reaction just because he had 2 little jumps. Thank you again for your reply and God bless you.

[ontheroad589]

I was 658 doagnosis, all GL 9 and 10'S in March 2016. Have been through 14 docetaxels and counting, zytiga, xtandi, casodex....stiill arrows in the quiver and still trying aything to keep this shit at bay. He has much more time left- get a new MO.

[Hidden in reply to ontheroad589]

Thank you for your message! May you Keep fighting and beating this disease.