Welcoming good advice

[Oct18]

Hello all,

I am going for another PSA check up tomorrow at Duke and would love advice of what to ask. Quick summary: diagnosed 10/18 Gleason 9 PSA 43, mets to pelvic area, 2 ribs and spine. Started with eliguard, and bicalutimide, PSA 2.9 on 11/18. Then started lupron and Zytiga and by 6/19 PSA was .01. Radiation to prostate 28 sessions and 4 mets 5 times April-June. Switched to Xtanti due to elevated liver enzymes and became undetectable 9/19. Stayed there until 6/20 PSA .02, 7/20 PSA .04 and 8/20 PSA .09. Scans in August showed no new mets and existing mets either the same or decreased in size. My doctor at Duke plans to check PSA tomorrow and scans again in three months. Each psa reading they still tell me that my PSA number is still a good number though I am very anxious as it is rising and seems to be rising rapidly.

[GP24]

With a Gleason 9 and an initial PSA of 43 any PSA value below 2.0 ng/ml is a good number. You have to fight the cancer, not the PSA value.

[Oct18 in reply to GP24]

Thank you! I read so much on here about PSA doubling times so as I get very anxious my doctors still seem encouraged by my check ups though not as encouraged as they were when I was truly undetectable.

[GP24 in reply to Oct18]

The encouragement of the doctor also depends on how much work he had to do before seeing you.

[Tall_Allen]

I recommend you ask about a tumor biopsy. Duke has one of the top labs for doing IHC analysis.

[Oct18 in reply to Tall_Allen]

Thanks TA, I had to google that but will do.

[RayF]

Hey Oct18, I was diagnosed Nov 18, gleason 9, PSA just over 4, many mets. I just moved, and will be going to Duke too, my first appt is in Jan. I am doing well all things considered. Best of luck to you.

[Oct18 in reply to RayF]

Best of luck to you as well!

[MateoBeach]

Yes I can see how that would be very worrisome, October. If the next PSA (today) is another such rise, the 4th consecutive, then that suggests emergence of castrate resistance. Chemo such as docetaxel may restore some responsiveness to enzalutamide and similar. And you can get Provenge paid for by insurance or Medicare if you are in the USA. Otherwise see what the genetic testing shows.Many more treatments available in clinical trials when you are CR. I would look into BAT trials personally. And many emerging immune treatments such as BiTE, etc. Good luck. Need to trim your sails for the long haul, and "Make it so", as Captain Picard would say. Courage and confidence to you. 💪

[Oct18]

All good info and much appreciated! I will update after my appointment.

[Jmr11820]

I’ve heard on this forum that PSA doubling times don’t apply at such low levels (.01, .02, .04). I don’t know, possibly someone can shed some light on that.

[HerbieP]

I'm at the Duke Cancer Center of Cary, Gleason 9 dx 2018, castration resistant metastatic, age 59 excellent health - asymptomatic besides my PSA climbing. Been through ADT (bicalutumide, zytiga, erleada) and Provenge immunotherapy, no radiation. I'm starting docetaxel chemo in two weeks as Dr. says that makes me a candidate for trials. He's pretty SOC/SOP kinda MO. My internal discourse is do I do trials with these folks at Duke, or head to a place that takes a more holistic approach like Envita Medical Center or Cancer Treatment Centers of America. Don't know if you've been at this juncture yet, just sharing my discourse.

[Oct18]

Sounds like you’ve been through a lot. I’ve wrestled with that thought as well as far as duke or a place that approaches this with a holistic method. At the end of the day I could go crazy trying to chase something that I don’t really know is better. I feel good about the way Duke is treating me. PSA was .33 today, PET scan set up for early March and possibly provenge after that. If PET scan shows just one or two spots then possibly radiation to those spots. I asked him about playing “whack a mole” and dr agrees if many spots show up but if only one or 2 then he may recommend radiation to that/those spots.

[Daddyishealing]

You are doing amazing. My dad has done all of those meds and we have never been able to get his psa that low. The fact that mets same or smaller is great news . Blessed to share in that joy . The psa can change even during a single day and vary so don't get caught up in that number . These treatments are working and this gave me great joy to read. My advice...enjoy it..take a staycation ...treat yourself ! I admire you !

[Oct18 in reply to Daddyishealing]

Thank you! I must say I was disappointed to hear my PSA has had it's 4th consecutive rise at yesterday's check-up. I read some of your posts about your dad and wish him and you all the best. I am only 48 (46 @ diagnosis) and pray I can be here for my twin 12 year old boys and 17 year old daughter for many years.

[Oct18]

update on my appointment: PSA .33 so my last 5 readings wereMarch 2020 <.01

June 2020 .02

July 2020 .04

August 2020 .09

November 2020 .33

PET scan in a few months, possibly provenge after that. CT scan in August showed no new spots and existing ones either the same or decreased in size. Disappointed in the rise of PSA but continuing to hope for more and successful options. Until then, its business as usual for this single dad.

[rogerwegner]

I am sorry that it took so long to reply. I was in the hospital getting a new hip, I started out with a psa of 150 and a Gleason of 7. I had seeds and beam radiation and lupron for the last 1 2 and half years. Erleada was added to mix,two years ago, when the psa rose to 4.5. After two years the psa dropped to 0.05.It is working for me