ggbk5 years ago

Good luck James. We are in not to dissimilar circumstances but have taken different paths in getting here. I was PSA 10.5, Gleason 9(5+4) at Dx and chose RP in March 2014, followed right away with IMRT because the post surgery PSA was .5. I only started ADT after a slow rising PSA reached about 2.5 about two months ago, and a lung met was found by a Gallium scan in Dec. 2017. I am now on Lupron, Zytiga and Prednisone. I am interested in following your results and wish you all the best. I think that makes me an Oligometastatic PCa as well

George

tango655 years ago

Good luck James.

Jscjac5 years ago

Wow ! This sounds like FANTASTIC news ! I am so pleased for you ! Your reports on the care you have received at MD Anderson has me leaning toward going there for another opinion, depending on what we find out at Vandy this coming week. Carry on ! Sounds like you are in a good place.

TNCanuck in reply to Jscjac4 years ago

Hi. My hubby is being treated at Vandy also. May I ask which MO and urologist you all see now? We're considering getting a second opinion outside Vandy soon, just to know we've covered all bases.

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Jscjac in reply to TNCanuck4 years ago

We are now seeing Dr. Nancy Davis. Had our first visit with her back on Jan. 22 and will see her again the first week of March. We were very favorably impressed with her knowledge and “bedside manner”. I think we will remain with her as long as Jeff’s PSA remains undetectable. For now, he is experiencing minimal side effects from his current protocol (Zytiga/Lupron/prednisone). Being nearly 18 months into his Stage 4 metastatic diagnosis, we are of course holding our breath each time the six week visit (labs) roll around. He has eleven mets and last scans (also done during January visit) show no change in them. So for now, we remain at Vandy with every intention of seeking further expertise as his condition warrants. My inclination is to head to MD Anderson or Sloan Kettering. But honestly and thankfully, there are many great docs to choose from. Good to hear from you and hope you guys are doing ok (all things considered...).

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Bobcat64 in reply to Jscjac3 years ago

Please update me on your progress at Vandy when available.

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Jscjac in reply to Bobcat643 years ago

Hi, Bobcat64. Sorry for the delay in responding, I just saw this message. My brain is in “social-distancing” mode. 🙃 We are still with Dr. Nancy Davis at Vandy. We go every six weeks and Jeff has labs and a visit with her. He has scans every 16-18 weeks. He continues the Zytiga/ prednisone along with the Lupron injections and his PSA remains undetectable. We are very satisfied with every aspect of the Vanderbilt experience. Dr. Davis is such a fine physician. I’ll be happy to answer any other questions you might have.

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Dan595 years ago

James, You. Have. Done Exceptional. MDAnderson agreeing to do the rp says a lot about where we are with this topic. I wish I had persued it. Early on myself. The way I see it, You will always know that you did all that you could to beat it back. You can have radiation after surgery, but much harder to do surgery after radiation.

LF275 years ago

Thanks for sharing your story James! Great to see the collaborative approach you've taken w your team. Good luck, and will look forward to following your progress. Best, Leo

Chiquis5 years ago

I wish you the best. Thank you for sharing. We will have you in our prayers.🙏👍

Dayatatime5 years ago

Right on James and in the good words of Bob Dylan...."Times are a changin"

I'm on month number 15 of a postoperative <0.01 PSA and clean scans starting with Gleason 9, Stage IV. My doc recommended 2 years adjuvant ADT and hoping I just had my last 6 month shot. Heading to Mayo in May for yearly and will decide then.

Was a hell of a ride getting here but thankful for the path I took. Initially I was told inoperative, HT forever and 3-5 year time stamp. All I'm going to say is that all doctors are not created equal.

Ron

paulofaus5 years ago

James, well done on making this tough decision. I am looking at Lutetium177 and I hope to get a good response. If I do, I am considering pushing hard for an RP. Ever since I was diagnosed, I've been told there's no point taking it out, but there seems to be a growing body of evidence that there is a point. Good luck and keep us posted.

Litlerny5 years ago

Hi, James

Thanks for the information and the very hopeful prognosis with the addition of prostatectomy. I am on a similar path, Stage 4 at diagnosis in 06/2015 at age 65 with a single (now dormant) bone met to inferior pubic ramus, ADT with Lupron/Eligard, and just finished 6 cycle course of docetaxel last Tuesday. PSA undetectable. Been going to Mayo Clinic in Jax, where they are very good, but seem to be a little more conservative. So the addition of prostatectomy is very interesting to me. It would seem that debulking the primary tumor would have several potential benefits both in halting the disease and quality of life.

Please keep me posted on your prostatectomy. I plan to discuss it with my Mayo MO at my next follow-up visit. Can you tell me who your MD Anderson MO is? I would be interested in knowing the potential short and long term risks against the potentially great benefit, insurance coverage implications (I have Medicare and Blue Cross), and other issues and questions I might be able to discuss with my Mayo doc.

Best wishes to you! Have a great day!!

Mark

Break605 years ago

James

I think it’s a good move. I’ve had oligomets since RP and can’t help but think that debulking helped.

Best to you!

Bob

j-o-h-n5 years ago

To: JamesAtlanta

oligo in Greek = A little

So I wish you poly (In Greek = A lot) success.

Good Luck and Good Health.

j-o-h-n Friday 03/16/2018 1:10 PM EDT

JamesAtlanta5 years ago

LOL! Well said and thank you!

Best,

James

snoraste5 years ago

James - these are fantastic results. Keep it up.

I’m also doing my RP next month at MSK - after much resistance from my MO.

I’m sure you have watched dr. Kwon’s presentations - extremely encouraging.

There is a growing number of stage 4 w/Mets in this forum who are doing the “debulking”. We’d have a lot of information to share soon.

JamesAtlanta5 years ago

Congratulations and best of luck with your upcoming RP. Please keep us all posted on your progress. And I hope you will share your experiences with your RP. I’m going to want to learn as much as I can to be as prepared as possible for what’s ahead.

I was very inspired by Dr. Kwon’s youtube Video. It certainly increased my confidence this is the right approach for me.

For anyone else reading who are not familiar with the reference to Dr. Kwon, here’s the video I’m referencing.

google.com/search?q=dr.+eug...

Best of luck on your journey! Thanks for the thoughtful comments.

James

mlabrams545 years ago

Good luck James. I am heading down a similar road with RP scheduled for early May at Methodist Hospital in Houston. Also stage 4, one bone met, been on neoadjuvant ADT and chemo (finished 6 rounds of paclitaxel and carboplatin in January). Original PSA of 60 down to 0.34 at last test. Finding the right urologist and oncologist to get on board with this approach is key for those of us with oligometastatic PC.

jdm35 years ago

Very interesting to me that some docs go with chemo and ADT for oligometastatic disease whereas others just go with ADT. Then with the ADT, there is also the questions of which drugs. There is also SBRT.

I had 4+3 (tertiary 5) diagnosis with RP in 9/2016 (55 yrs old). Recurrence and salvage radiation (should have done a scan first now that I know what I know). PSA was still rising. Had the 18-F PSMA scan at Johns Hopkins that revealed one met in the right hip and my MO at Dana Farber put me on Casodex and Lupron and we did SBRT to to the met. MO said disease volume is too low to justify chemo and will save Zytiga for later if needed.

After 3 months of ADT, PSA is undetectable, but I still wonder if chemo might have helped eradicate anything else.

Good luck to you.

JamesAtlanta5 years ago

Best of luck to you, too. Amazing how the treatment approaches are changing so rapidly. What I like about this forum is I think we, as patients, are accelerating the change by being informed and asking questions to our doctors. I think it pushes the doctors to stay on top of the latest treatment approaches.

James

Dayatatime in reply to JamesAtlanta5 years ago

I couldn't agree more. In my case my local doctors now commend me for making the decision to go to Mayo. My local Oncologist told me empowering myself with the knowledge I did and moving on it was actually inspiring to see. My experience and the direct result has curved their logic on the treatment of this disease. I still work with my local doctors and do a Mayo trip yearly.

Ron

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petercraig25 years ago

Sounds like a good plan for you James.

All I can add is before surgery work hard every single day on Kegel exercises. I had DaVinci RP not that it makes a big difference but getting bladder control after the catheter and bag was removed just about drove me crazy. It's horrible to feel a a child again not having control of peeing.

I've had a couple or minor relapses of bladder control following radiation therapy and just went back and worked on the Kegel exercises again and now all seems to be fine.

You'll do fine but good luck and never give up.

Peter

JamesAtlanta5 years ago

Thanks, Peter! And really appreciate the tip. I’ll start today!

Have a nice weekend!

James

Lawrencee5 years ago

May i ask who will perform your surgery at MD Anderson?

PhilipSZacarias5 years ago

Hello James Atlanta, I was diagnosed in 2016 at age 61 with multi-metastatic PCa (>5 mets, no visceral met), PSA ~30 and rising, Gleason 9. I reviewed the literature and found l reports on the potential benefits of "cytoreduction" (which is another way of saying debulking, I believe) and SBRT. I opted for the latter because of some reports from Vancouver showing an added benefit for patients on ADT, due to the potential for an abscopal effect (i.e., irradiating the prostate may promote, in less that 5% of cases, an immune response that suppresses the mets). I also determined that RT had fewer side effects and was more appropriate in the context of my possibly abbreviated lifespan. I see many fellow travellers opting for RP so that they can still be treated with RT at a later stage, which I think is a sound strategy. I made my choice for RT based on the information I had at the time and hopefully the benefits will be similar to RP. It should be noted that there are ongoing clinical trials in this area, which should definitively determine which is the better course of treatment. Cheers, Phil

RJ-MN5 years ago

Strength to you, James. Live into, and then out of, this informed decision!

JamesAtlanta in reply to RJ-MN5 years ago

I appreciate the kind words. Surgery in 2 weeks 🤞

Best,

James

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TNCanuck5 years ago

Thank you for sharing! Prayers for a great outcome.

Survivor19655 years ago

Interesting, my urologist in MN said my prostate needs to come out regardless. Not sure what the “horse is out of the barn thing@ is all about

Merlin19602 years ago

Hi James , your story is similar to my husband , just saw this old post and wondered how you are doing ?

JamesAtlanta in reply to Merlin19602 years ago

Hi! Hope your husband is doing well! As for me, I had a great 18-month “holiday”. Then PSA started to rise after being undetectable for 3 1/2 years. I had a PSMA PET scan and they found 1 small met (0.6 cm) in my hip. Restarted ADT (Firmagon + Erleada) 2-weeks ago. PSA is already down to 0.22 and I expect it to be back to undetectable when I have my next test in 2-weeks. They plan to radiate my hip in a couple of months. With luck we will begin discussing another “holiday” in a year.

I have been fighting prostate cancer for 6 1/2 years. My oncologist told me last week I am doing “much better than he expected…” I have been very fortunate. And it illustrates how much treatment has progressed in the last 5+ years. Tell your husband to keep fighting!

Best wishes,

James

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Merlin19602 years ago

Thank you , we are thankful for the time he stays well and try not to think too far ahead … I am glad you are doing well …