PRE-ZYTIGA LUPRON PSA DIDN'T DROP MUCH

[spouse21]

Greetings, Everyone.

My husband checked in with Dr. Matthew Smith at Mass General yesterday to get a PSA test and see how things are going--see history below. We asked what PSA he hoped to see since my husband restarted Lupron again three months ago. His answer was "around 2 then hopefully going to undetectable." (His local urologist and internist had also predicted a quicker drop.) Dr. Smith will start him on Zytiga/Prenisone January, 2019.

When my husband checked the portal last night, his PSA result was 7. Ugh, decimal after the 7, not before. (His PSA dropped significantly a lot sooner when he first went on Lupron in 2014) He's going to talk to Dr. Smith's PA today and mention the PSA didn't drop as much as Dr. Smith predicted, so maybe we'll learn more about what this small PSA drop might mean.

Meanwhile, anyone out there care to comment on your own pre-Zytiga Lupron history or have any insights? It's hard to find men's histories to see how their ADT restart proceeded before they went on Zytiga. I will check back in with any feedback from Mass General, which can take some time.

History:

Husband 70 yrs (74 now) pacemaker; Agent Orange 6-9/14: blood in urine; DRE suspicious biopsy 11/14: G 9 (4+5), PSA: 3.32 high Gleason, low PSA, PNI involved 11/14: Lupron taken for 33 mos and currently on Lupron again after a year hiatus.

6/15: 9 wks IMRT

9/15: .14

1/16=.093

4/16=.079

11/16=.05 (nadir)

2/17-5/17=.05

1

1/17=.08

2/18 .20

4/18 0.98 6/18: 3-4 bone mets

7/18 3.29

8/28 9.0 Lupron re-started

11/27/18 (yesterday): 7.0

Zytiga planned 1/19

[Tall_Allen]

Hopefully, the Zytiga will overcome the castration resistance.

[spouse21 in reply to Tall_Allen]

Thanks, TA. We were hoping he wasn't becoming castrate resistant, but sounds as if he is. Haven't heard from Smith's office yet. I'll check back in when we do so that whatever information we get can be posted and helpful to others in similar situations.

[kooss]

Age now: 76 On 2/2017, PSA 24.8. Biopsy: Gleason 9 w/ cancer in 5 of 12 sectors needled. Three bone mets in two ribs and iliac. Started Firmagon, 3/2017. Changed to 6-month Eligard on 4/2017 with monthly Xgeva also. PSA dropped to .85 by 7/2017 -- moved up to 1.62 in 7/2018. Added daily Zytiga/Prednisone 10/2018. PSA now .50 and falling. Only side effects for either drug were hot flashes (medium, but acceptable early and almost non-existent now), gained about 15-20 pounds, a bit of fatigue early but really not a problem, and memory/recall affected a bit. Biggest concern is bone mets and effect on them (so far, decrease in size, a bit more pain, and a third met has developed).

[Fairwind]

Hopefully, the Zytiga will give a good response...I would start it ASAP as there is not much reason to wait until January unless it's some sort of insurance issue. It sounds like he must be a VET so check in with your local VA medical center where Zytiga can be provided at no cost to you..

[spouse21 in reply to Fairwind]

Thank you everyone for your responses. My husband is trying to get through the Mass General bureaucracy to get the drugs through the VA--a big hassle right now. Still waiting to hear from Dr. Smith about the disappointing PSA drop. I'll post again when we get the feedback so that others can benefit from my husband's situation. We live a hundred miles from Boston so don't have the close relationship with the MGH docs as we do locally. Dr. Smith says we'll have once a month visits when the Zytiga starts, so we'll have more of a relationship with him and the hospital. They're the umbrella hospital for our local doctors.

[herb1]

I don't understand, why isn't Casodex (and Avodart) being tried (with Lupron) before jumping to the more active but MUCH MORE expensive Zytiga?

[spouse21]

Thank you for your concern. Sorry, I forgot to mention that my husband did have Casodex for a month. Dr. Smith says in his practice the problem of flare from Lupron is almost non-existent. Adovart wasn't suggested.

[j-o-h-n]

Your Husband <===== fist bump=====> j-o-h-n. Thank you for being a trooper. God Speed.

Good luck, Good Health and Good Humor.

j-o-h-n Thursday 11/29/2018 6:32 PM EST

[Kenn2017]

I was on lupron and started losing ground. After talking with my MO at Mayo, I was also put on Xtandi. Did not have many observable side effects from Xtandi and it worked as a combination with lupron for about a year. Then PSA started rising. I decided to look for something else to help me. Read some interesting blogs on fenbenzadole. I started taking it and within two weeks my PSA had dropped by about 50%. I cannot recommend it, but merely share my experience.