Also a New Member - First Post

[David20451]

15 year fighter. Last two years on Xtandi which has kept my psa at  <.01. Been through many therapies. 70 years old and considere myself in good health.

[DenDoc]

About to move on to Xtandi next month. Can you post more about your experience with the drug, side effects, etc? Are you on other meds(LHRH agonists)?

A brief clinical history would be helpful to others.

[bb66hotflash in reply to DenDoc]

Hi DenDoc, check my posts.  Been on Xtandi for 31 cycles.  Best of Luck.

bb66hotflash

[David20451 in reply to DenDoc]

Taken off of Lupron when I started Xtandi. Controlling PSA with Xtandi alone.

[DenDoc in reply to David20451]

Very interesting. Both my treating oncologist and my second opinion urologic oncologist have recommended that I stay on Lupron and add Xtandi. Their reasoning is that one blocks production and the other blocks cellular attachment of the evil testosterone which fuels the cancer cells. Will have more discussions with them next month. 

[David20451 in reply to DenDoc]

Radiation Oncologist was against stopping Lupron. Medical Oncologist was willing to give it a try. I really hated Lupron.

[JoelT]

David,

Welcome to the group.  I hope that you will be willing to share your many years of experience with us. 

Joel

[David20451]

Thanks for the welcome! Diagnosed 11/00. Radical 1/01- positive margins and gleason 9. 4-1/2 years PSA undetectable. Rising PSA - 45 IMRT. Lupron+Casodex. PET scan one lymph node on iliac chain. SBRT 4 high doses. Quickly knocked down PSA. Lupron. Rising PSA. Started Zytiga. Good for about two years. Rise in PSA. Second series of SBRT decided to switch to Xtandi (4/14) brought down PSA. Provenge 9/14. PSA <0.1 since. Been quite the journey. I found that I had less side effects on Zytiga than Xtandi. Really healthy otherwise and just fight the fatigue and the lack of appetite.

[DenDoc in reply to David20451]

I would welcome the lack of appetite.(an old problem for me is eating) Fatigue would be an issue:I am too busy caring for grandkids and working in my son's business as a gopher and light maintenance guy. I have a great need to be busy all the time and have to room for fatigue. Will see.

[TRinVirginiaBeach]

David et al Xtandi guys,

I am new to this forum, I've limited my activities to two other competing forums for the past few years.

I am reaching out to get your Xtandi/Testosterone level experience.

I'm seven years into the game; have been on Firmagon since 6/16 and added Xtandi back in 2/2017.

My PSA went to <.01 within 3 months of adding the Xtandi and is still there. However, my T, which was 14 just before I began Xtandi has now risen to 63.

My MO said we'll keep an eye on it, but, I am a worrier.

But, I've seen here that several of you here have <.01 PSA and quite elevated T levels.

I would appreciate any replies as to your experience with this same issue.

Thank you in advance for any help or input you might provide.

Tony

[David20451]

2000 diagnosis. Radical, IMRT, Lupron et al. Early adopter of Zytiga. Found lymph node on iliac chain. Had SBRT twice. Followed by Provenge and then Xtandi. PSA undetectable for three years so far. No Lupron. Testosterone has gone from castrate to a range between 200 and 250.

[GeorgeGlass in reply to David20451]

Where did they target the sbrt? It sounds like the cancer may not be metastatic or outside the prostate area?

[rococo]

It would be helpful to know what your psa was when you stopped the lupron or was it zytega and I can tell you how I did the same thing with casodex for 7+ yrs. Rocco

[David20451]

Started Xtandi following SBRT to large Iliac lymph node. PSA at the time was 2.3. Stopped Lupron at this time (4/14).