2nd time unlucky recurrence

[CYR7]

It’s bad enough having a recurrence but a second recurrence one year after the other?

First discovered Prostate cancer in 2015, PSA 32 and Gleason 8. EBRT and ADT treatment pushed PSA down to 0.1. During intermittent treatment found PSA moving up to 1 within a period of 4 months. Ga68 PSMA discovered two foci in prostate. Underwent whole gland HIFU in Dec, 2017, with PSA down to 0.1 again. Six months later PSA started to creep up and now reads 2, a really sharp jump. Ga68 PSMA found one low level uptake in the Lumbar but all clear in the prostate bed.

One oncologist suggests ADT and radiation together aggressively while another suggests radiation only but no ADT. Just wonder if anyone has similar experience that you can share. Needless to say this is really upsetting.

Bob

[GP24]

I would let the PSA value continue to rise and do another PSMA PET/CT before it reaches 10 ng/ml. Then you will know the reason for the rise.

If you decide for intermittent ADT, many good doctors start with that at 10 ng/ml and make a break when it drops below 4 ng/ml. So it is not unsafe to let it rise to 10 ng/ml. But many patients will disagree with this, I know.

[Tall_Allen]

Talk to an MO. He can probably convince your insurance to let you have Zytiga, even though you aren't strictly "newly diagnosed." Unless the spinal met is bothering you, you can leave it alone for now or you can zap it with a single dose of SBRT. The thing to understand is that once mets have reached the bone, it is systemic and you need systemic treatment.

[greatjohn]

this is exactly what happened to me...I had Gleason 7 in 2014. Had Radiation only. Within months we noticed the PSA had not gone down enough. Started Lupron. Had HIFU... PSA (again) began to rise...had the newer Axumin Pet scan and found several mets on pelvic bones and several lymph nodes involved. Then, alas, did Chemo...PSA went down...but then started up...then did Provenge and simultaneously started Xtandi. PSA went down slowly to just under one in a few months on Xtandi, but now it's just bumped back over one (slightly). Latest Axumin pet scan shows shrinkage in all of the mets...so I'm HOPING the PSA does go down and stays down for a while. It's been a crappy 4 1/2 years of nothing working. Still no pain, just exhausted from all the treatments! Good Luck, hope you can get a quicker fix than I have gotten....

[CYR7]

Thanks all.

Tall Allen, do you mean using Zytiga in addition to Zoladex which I have just been administered. Not sure if it’s lucky or unlucky, I don’t need to ask for insurance approval as I live in Asia. I will check the cost too. Are there any reference on using Zytiga and ADT together? May be useful to show that to my oncologist, as he did not mention this possibility.

[Break60]

How about 4 recurrences? This is not at all unusual for Gleason 8-10 which is pretty much incurable. Recurrence is better than death because it means each treatment has worked for awhile.

[CYR7 in reply to Break60]

Good attitude!!! I should think like that.

[Hidden]

Hi Bob,

My prostate cancer history is:

Gleason 4/4 with positive margins. RALP in 2008.

Cancer recurred in 2009, so I had IMRT plus 1 year on Lupron, 30 mg. PSA < .006

Cancer recurred 2 years later in 2011. PSA 1.87

I went on Androgen Deprivaton Therapy (ADT4) in 2011.

Lupron (7.5 mg), Casodex, Avodart, Cabergoline. Also, Prolia 60 mg / 6 mo.

PSA <0.006 Testosterone < 3.0

Cancer recurred in 2013, switched from Casodex to Nilutamide.

PSA dropped back <.006 within 4 months. T < 3.

I had Provenge immunotherapy in 2014.

I had an apherisis catheter (port) for the 3 Provenge procedures.

I added Metformin to my regimen in 2015.

I stopped Lupron in Oct 2016, but continue other medications in my regimen.

PSA <0.006 and T =36 currently.

I am 77 YO and plan to continue adjusting my treatment if/when the cancer recurs.

The fight is different for each of us. Good luck with yours.....

[johnscats]

Hi cyr7 can u tell me how the met formin worked and r u still on it I have stage 4 with mets on pelvis spine femur lmph nodes right lung diagnosed Dec 17 put on firmagon and started using rso oil in march psa 25 July 2.24 ct scan with contrast no detailed mets prostrate has returned to normal size have added 4MU and milkthistle to my meds so looking at metformin best wishes john

[CYR7 in reply to johnscats]

Need to talk to my oncologist again. Earliest tomotherapy is in 2 weeks. Will keep you posted.

[johnscats in reply to CYR7]

Thanks best of luckj

[Geoff22]

I was diagnosed in 2011. PSA 7.75 gleason 8. Had radiation. Psa slowly started to creep up. Went on Eligard when PSA was 4.26. Urologist found a small spot in prostate. Had crotherapy (freeze) in Oct 2017. By July 2018 PSA was undetectable! I was estatic. In October of 2018 my PSA was 6.6. What a letdown. Waiting for scans & MRI to see where the cancer is. Prepared for a lifelong battle

[CYR7 in reply to Geoff22]

Looks that way. Guess we should be thankful we’re still in the battle

[Kevinski65]

I was diagnosed at age 59. I'm now near to 66. I had a PSA of 31, doubling 5 months, stage 4, M1, 3 mets to bone, Gleason 9. Got Lupron couple weeks of Casodex. Took like 5 supplements at a time, always switching to others. Lupron lasted 2.5 years added Xtandi. I've been .02 ever since. I take pomagranite juice and Zyflamend now. I also take aspirin for pain. I've been given lipitor. So Xtandi and Lupron have lasted over 3 years. I don't eat meat injected with male hormones. I don't drink alcohol or smoke. I also retired at 62 to reduce stress. Side effects suck though.

[CYR7 in reply to Kevinski65]

7 years and going strong...that gives me hope. I’m starting radiation Monday.

[CYR7]

Just to keep you all posted. After a 10-session Tomotherapy, and back on ADT, my latest PSA reading has gone down from almost 2 to 0.4 and 0.02. Hope it keeps that way. I’m also on BIRM.