July 2011: PSA 11 before RP prostatectomy: PSA 0.2 afterward
Fall 2011: PSA began rising
February 2012: 27 rounds radiation, PSA 0
July 2014: PSA .2
November 2014: PSA .4
Wait and watch, 3, and 6 month interval PSA checks
Sept 2018: CT scan, no mets
Nov 2018: PSA 9.03
December 2018: began Lupron (6 mo)
March 2019: PSA 1.05
Dr said wait until PSA gets up to 4 for next shot (intermittent)
September 2019: PSA 1.97
March 2020: PSA 10.43 Got next Lupron shot
June 2020: PSA 4.27
Sept 2020: PSA 12.14 Dr says take another 6 month ADT shot (Lupron shortage- maybe Eligard), then check PSA in March 2021
Jan 2021- PSA shot up to 34
Began Casodex. Got extremely ill with side effects, quit after 10 days. Couldn’t eat, 3 days without food, body was going into a fasting mode. Dizzy, nausea, headaches, body aches.
FINALLY! The question:
Looking for strategies you use when transitioning to a new therapy. I had no problem with Lupron. So when the time came to go to casodex, I just started taking it. It hit me like the worst flu ever (symptoms above). The main discomfort was an inability to eat or drink, which exacerbated the other symptoms. So I quit taking it. Dr. says, we go to Zytiga and prednisone next. Life extension is worthwhile, but feeling like crap for a long time, to gain some months may not be the route I want to go. Thank you all.
Charlie
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CharlieBC
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Try it. It's not a direct anti-androgen, like Casodex. If it disagrees with you you can always try one of the other anti-androgens. Consider medical cannabis for symptoms like the ones you've had.
Thank you, Nal. Since the end of casodex was recent, we'll start the zytiga and P soon. And I'll adjust the timing of ingestion to hopefully have minimal impact (night vs morning, full belly vs ingesting before a meal, lots of wateretc.).
I take the full dose on an empty tummy then eat about an hour and half later, take the prednisone with breakfast so I get my sleep at night. Good luck and God speed.
I didn't know anyone started casodex after using Lupron only. I was put on casodex first then Lupron 3 weeks later. After another 3 weeks on both, i was taken off casodex permanently. Is that not the standard?
I was suppressing the PSA with Lupron only. Then, since it no longer worked, my urologist added Casodex and handed me off to a Oncologist. Now, I'm starting the zytiga instead.
Looks like we have way to much in common. Both fighting this disease, both in Colorado, both using Kaiser( I’m in the process of leaving Kaiser), both have Bernedoodles. 😀😀😀
Try the Zytiga with Prednisone .You may get some side effects but not like Cassodex. I also take Lupron Injections every 3=Months which gives me hot flashes. On now for 14 months . Stage 4 Gleason 4+3 tumors in spine. PSA was 27/now both PSA and Testosterone unmeasurable. Received radiation treatment on 2 cm tumor in Prostate and T11. Only side effects so far.nBrain fog, Constipation, Require a nap in afternoon some days. Diagnosed in September 2019, Started Zytiga protocol in February 2020 followed by radiation in June 2020 after shrinking tumor in prostate . PSA reduced to .01. In quarantine since March 2020 because of Covid 19 .Just got my first Astra Zeneca Vaccination. No side effects.
I had mild hot flashes from Lupron. I don't mind a little brain fog; just don't want a debilitating reaction that prevents me from driving or getting out for activities.
I have had good results so far doing the arbitrone with prednisone, takes time to see results, went from 12.5 to 2.2 in the last. Waiting to see latest blood work from this week before going to appointment next week.
Been on Lupron for a long time..... never had issues which you had. We are all different, some handsome like me and others not so handsome. I do have the "normal" side effects however.. such as, Brain Fog - forgetting (how ugly I really am), Weight gain and a sense of humor. Keep up the fight........ we need you here....
Charlie, I am sorry for your Hard time. I went on Casodex with no problem along with metformin, Avodart & Proscar with a hip bone met and multi Lymph mets Dec 2017 at 23 years after PCa surgery at a PSA of 12.2. Now PSA is 0.056. I never had ADT. For more Information Go to rvaprostatecancersupport.org and look at peter's note. Best RVA LUNA
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