Questions:
My husband diagnosed Stage IV 13 years ago.
He's not been on Casodex or Zolodex since 2014.
We hadn't taken a PSA for about 6 weeks. His psa went from 55 to 64 in that time.
It was the alk phos that scared us, it shot up to 740, I honestly can't remember the number.. it was at another blood lab. Though it was significant, maybe by 500. (pretty much freaked us out).
We decided to begin Casodex immediately. To be followed 7 days later by Zolodex.
7 hours after the Casodex the pain shot up in every spot on the scan.
It flared in places it he had never felt, although scan had showed activity.
Example, he's had T12 tumor for 13 years and never felt it before.
Every spot, T12, L4, Right hip, Tip of tail bone, all gave him pain that hit about a 7.
We took more opioids. He was only on 1/2 oxy 5, and occasionally a 5. We needed 10 every 4 hours.
Our doc thought it could be a good sign since he was getting a reaction and said it should begin to drop in about 1 1/2 days. Sure enough it dropped. We lowered pain meds.
At day 7, Friday got the Zolodex shot. I had a gut feeling the alk phos was so high that he might still get a flare.
The pain did spurt a little, not much for a day. He's since back to either a Norco, or either a 5 oxy, but mostly a 2 1/2.I believe the pain spurted a bit but not much and he's dropped his pain meds to 1/2 ox 5 from taking a 5.
We tested again the day after the Zolodex on Saturday.
Since he looks better, much less pain, feeling good, active, sleeping at night without having to wait for meds to work and actually what has been another key is. The edema in his legs, that was causing hard calves, dropped entirely. His legs are back to his bony knees etc.
Today and my heart stopped because I opened his test result from Saturday and PSA doubled to 122. In our 13 years, his PSA never doubled, yet 8 days after Casodex and one day after Zolodex it doubled from 64 to 122. His Alk Phos actually dropped by 100 points.
I'm looking for an explanation since I am not in denial about PCa. I just know that it isn't coincidental that he doubled the same week taking meds, with all of a sudden his pattern changing.
Have any of you had experience what a flare looks like, acts like and any possibility on the positive side for this kind of movement.
What signals I saw were the flare to each spot seen on the scans giving him pain.
Then subsiding.
The really high alk phos, either needing more time on the casodex to make sure he wouldn't get a flare from the Zolodex. Although, the Zolodex was only taken one day before this high PSA.
So, in thinking about it.. one explanation is a Casodex flare?
I know we have to wait another 10 days for another test to see really what this indicates. To see if the Zolodex is working and then maybe get completely off the Casodex.
I'm so confused since he's doing so much better, dropping the amount of meds, got through impacted bowels from upping the meds and not quickly enough taking the laxatives needed. He's now having regular stools on Senna-S.
I need to think this through. I hate to tell him since he's feeling so much better.
His pattern over the last 13 years was never to double. And, after psa inching up for months, doubling in 10 days after meds. Any ideas that I can discuss with his doc about this. I haven't spoken to him yet, I just got the results and you guys are my go to for brainstorming. Thanks so much..