Advanced Prostate Cancer
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Dads PSA on the rise again😕

So mad, sad, upset, words cannot describe how disappointed I am. I don’t even have the heart to tell him. In almost 18 months only once did his PSA decline.. from 98 to 54 in the initial 13 days with Zytiga. We were hopeful it would continue to stop the growth.Now it’s back up to 90 in 15 days..

New CT scans planned for next week. Doesn’t look like we will get good news just by all his numbers rising..

Any suggestions would help..

thank you all for listening..

Monique

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Don’t be disheartened, I’ve seen everything on these posts and enough to know they might just need to use another medicine. I know your Dad is happy to have your support. Stay hopeful it makes all the difference .

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On Zytiga, three things matter: the PSA, the Scans, and how your dad feels. My oncologist puts a lot of reliance on the third. I hope despite the rise your dad feels good.

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Living with prostate cancer is a game of math and the numbers tumble through one's mind in a blur like the reds and blacks of a roulette wheel. The high anxiety spin followed by ecstasy or sorrow begins to define life. Knowing the numbers becomes both a source of knowledge and an addiction. Walk away from the table as often as you can. If you can, block tomorrow from your mind and bet on this day.

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I have to tell you, your words are very eloquent and thought provoking. I have read some of your previous posts and found them to be the same. Thank you.

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Such good advice!

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Sage advice friend! Bet on today!!

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It's possible that he could rechallenge Docetaxel or go on to second line chemo Jevtana if that doesn't work. That could also resensitize him to either Zytiga or Xtandi. Hang in there, don't give up hope. We are all with you.

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Between you and his doctor, I am confident he is getting the best care possible.

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Thank you all.

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Does some of your Father's cancer burden have Neuroendocrine cell type features?

If so, perhaps you might glean some information and names from this paper, and the accompanying References, perhaps for second opinion purposes?

"Clinical and molecular features of treatment-related neuroendocrine prostate cancer."

onlinelibrary.wiley.com/doi...

This link to recruiting "prostate cancer" Clinical trials in California with "neuroendocrine" aspects might also provide some leads or connections to places, people, or experimental agents not yet considered?

clinicaltrials.gov/ct2/resu...

Your Father is very lucky to have such a concerned, loving daughter. Remember, he needs you to just be yourself, day-to-day, in the present moment, as much or more than he might need your assistance in the speculative future in the anxiety-ridden territory of the often unknowable future and "next medical options" searching. Easy to say, of course, but harder to do, sometimes. I hope you guys will find some quiet times together in the months ahead to share those hugs and, perhaps in some ways, some of the the best times of your lives, without any past "trivial" things getting in the way. Hugs and rocking chairs have medicinal qualities, I've heard. ;-)

Charles

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I'm just extending a hug and my support. The numbers are important,but not the only tool. My father on lupron never dropped below four even on chemo. He works and he does have pain but he uses all as an opportunity. My dad's numbers were on the rise for over three tests, this qualified

Him for PROVENGE. To our surprise and joy once approved his numbers went down and he still underwent the therapy he wanted. Rt now there are so many combination options and the field is under rapid study. I am a daddy's girl I know I try not to cry when I see him in pain or saw him through chemo, but these men on here know their stuff and they are living proof that old Google statistics are outdated bs. I'm sure there's a new strategy they are going to try for your dad, so maybe you can get informed here and then get two medical opinions if more treatment needed. I wish I could tell you the road to health is a straight one, but even through your tears accept that it's not a straight road and advancements are happening. I sure do relate to your tears and if ever in need of moral support I am here as well as the heroic men who have taught me so much. Sending love and healing to you and Dad and to all of the men on here who I so admire. Xoxo love and light , Erica

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Just the best replies from all here. Heading off to read that clinical trial link from Charles. Btw, I hope qualifying for Provenge means a patient can afford it! Keeping fingers crossed for immunology or vaccines or ? I’m for the rocking chair, too. Keep on believing and advocating, Monique and Erica. Mrs. S

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Yes, medicare did cover provenge. When my dad first got sick I literally cried day and night and only left the house to see him. I was lost because I felt it's supposed to be me on the other side of that doctors door as he has seen me through roughly seven surgeries. I never imagined the hope I'd find,or exactly how much was left to try in the treatment field. I felt sad and mad that my amazing dad would ever be the one to get sick. Sadly noone is invincible, but happily I can tell you that on Friday I'm leaving with my dad to go to the Catskills on a family vacation with my sisters and my 91 year old grandpa. He knew a couple weeks before but July 16 marks two years from the day he told me,so don't give up hope or stop learning. In doing so you will be such great support for your dad, and knowledge truly is power. Right now you are still a bit in the shock and grief phase possibly, and it took awhile for me to get to acceptance where I could enjoy my dad not cry and heave and shake petrified of this disease. Let yourself feel and when you lose sight reach out to this amazing group. I repeat knowledge is power and all stages of grief part of the process of making peace with it all.xoxo

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I know it's hard, stay positive, KEEP looking for new developments, diet exercise and get him outside walking much as possible rolling or whatever, his attitude is key.

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The PSA numbers are important, but they aren't the only thing. How does your father feel? Good, bad, in-between? If his mets are stable and he feels OK (other than chemo/lupron side effects) I'd be suspicious of those numbers. I have a neighbor whose PSA has always been in the 75+ range and he's never had Prostate Cancer. There are false positives. Prostate Cancer is a sneaky little critter; you have to look at the total picture to see what's going on.

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He feels ok but feels his nodes getting bigger in his neck and groin. It worries him. I know it’s a number. We try hard to not let that number get in the way. Once i told him he already knew because he was feeling like it was worse then 1 month ago. He is positive that something will work and that’s all that matters ! Thank you and prayers to you all!

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It’s possible to drop again. My dad is on zytiga as well. His numbers rose twice in a row and they were about to take him off of it and they dropped suddenly. That has happened now twice. He’s now lower than before. Let’s see what your dads scans say. They may wait to switch if his scans don’t show any growth.

Good luck. This is not an easy journey.

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Thank you! I’ve screen-saved this for our future. With our diagnosis and yours, it’s hard to know when to insist on scans. I like what one person recommended, namely to consider PSAs, scans, AND how the patient feels. Mrs. S

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I really hope so!! He has failed even chemo so i am waiting to see in 1 week if there’s any changes. Thank you

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6 days and PSA went from 90 to 99?? I would be shocked if it dropped. I will try to keep my hopes up but I think I need to look into the next treatment.

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So many good posts here. With you his advocate, I’m sure he will receive the best possible care from his doctors. I’ve learned to keep my options open, ask a lot of questions, be open to second opinions, and don’t get hung up on ‘the Number’, cause that in itself can drive one crazy. Keep the faith, and I’m assuming you do, and count your blessings every day; none of us, whether living with a cancer diagnosis or as healthy as a ‘horse’ are guaranteed tomorrow. God bless you and your dad.

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Thank you, I really hate hanging on to numbers but he feels it -and he knows when it’s growing. So I’m trying to be positive and hope we can some better results soon. Thank you

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Hi Monique. I think the best thing for right now is not to worry too much and see what the CT scan shows. Good luck to you! Mel.

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Yes Melanie, I know we have been through this numerous times, he feels it though. He feels his nodes enlarging in his neck and groin😕 I pray that they have not grown at at lease he can get more time on Zytiga. Thank you

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When you arrived at a point where first line treatment became obsolete, it maybe worthwhile to start looking for alternative treatments. One avenue maybe to contact rof Henry Lai from the university of Washington. I am fighting tubular prostate cancer and had very good results with Coartem.

Secondly, a dedicated prostate cancer diet can makes a difference.

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