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Brother in law Johns Hopkins

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Posted 2/12/2020 12:23 AM (GMT 0)
R

Post Edited (island time) : 3/3/2020 7:26:09 PM (GMT-7)

Posted 2/12/2020 12:38 AM (GMT 0)

Setbacks are hard to deal with, to be sure.

I'm thankful your brother-in-law is at Johns Hopkins.

Sounds like he will be receiving proactive, cutting edge treatments.

Hope his treatments will help! Keep us updated.

Sending support, encouragement, and caring thoughts,
Cyclone --- Iowa State University
Posted 2/12/2020 12:41 AM (GMT 0)
That is heartbreaking.

and far to close to home.
Posted 2/12/2020 1:27 AM (GMT 0)
That does suck. Hopefully the spot radiation and ADT will work for a very long remission.
Posted 2/12/2020 2:31 AM (GMT 0)
Sorry IT, that your family has to go through this. Hope it’s a good ending 🙏🏻
Posted 2/13/2020 12:31 AM (GMT 0)

island time said...
Ralp just before me. PSA 20, G8 with positive node. ART w/ ADT.

Went off ADT 6 months ago. PSA comes back. Doubling time 3 mos. Now at JH.

One spot on thigh bone. One spot abdominal node. One spot node in neck. (Axium). Had first radiation to thigh bone and mapped the 2 nodes today. Gets shot of radium 223 tomorrow. Will be up there 5 weeks. Clinical trial.

Heartbreaking to me for my sister. They assumed he was cured.

It’s too close to home.

Very sorry about the news. I don’t know who they were, but that pathology was too high risk to be making a cure assumption so early.
Posted 2/13/2020 4:57 PM (GMT 0)
Man, that's a tough one IT. Hoping he knocks this down and stay in remission for a verrrrry looooong time. Wishing your BIL and family all the best.
Posted 2/13/2020 5:06 PM (GMT 0)
sorry to hear this news. U say he had RALP around when u did, which was late 2015. U then say he stopped ADT 6 months ago. He was on it since then? Not sure i understand the timeline. Again, sorry for u and your family
Posted 2/13/2020 5:34 PM (GMT 0)
MM,
I think the BIL went on ADT for a period of time for adjuvent RT.
Posted 2/13/2020 6:03 PM (GMT 0)
Matt. My confusion lies here...The OP says his BIL had RALP around when he did, Nov of 2015. Then after that, had ART/ADT. Ok, so far I get it. But then he says he went off ADT 6 months ago. The OP is making it sound like they just found this out...not so if he just got off ADT 6 months ago. Why would he be on ADT in the first place, at this point in time, unless something was discovered sooner? Again, and most importantly, my best wishes for a good outcome
Posted 2/13/2020 7:56 PM (GMT 0)
The information shows a high risk dx with a positive node. Three years of ADT would be a standard of care. It looks like in the last year he came off of ADT and when the T recovered to above castrate level and PCa to start growing and expressing PSA. Triggered scans that show Mets.

Timeline makes sense and, unfortunately, he is systemic despite the aggressive initial treatment. It was likely systemic at dx, just nothing showed. The ADT worked to suppress the PCa which started growing again after the T recovered.
Posted 2/13/2020 8:13 PM (GMT 0)
JNF: Thank u for the reply. I guess what confused me was that my timeline kind of mirrors the OP and his BIL. My surgery was in Dec of 2015. As u can see, my stats are high risk, and at the time SOC was ( at least in my case) ART/SRT/ADT after RALP. ADT was, at least at that time, standard for 2 years. My last shot was Feb 2018..for 3 months, total of 24/25 months. I am now closing in on 2 years of being off ADT...this is why the timeline threw me. Thank u for taking the time to explain.
Posted 2/13/2020 10:29 PM (GMT 0)
Mich, I’m guessing the PSA of 20 and a positive node lengthened the ADT time. You look like the PCa is under control off the ADT. Hope that continues.
Posted 2/14/2020 11:28 PM (GMT 0)
IT,

He is at a great institute that should provide the best care possible. I am sure they have seen everything. A lot can be done, but as you mention, G8 can be tough. Just depends on exactly what he has as every situation is different. That his PSA stayed down while on ADT is encouraging as he may not yet be refractory. The next 45 days on the new treatment plan should tell a lot.

Please send him our best wishes.
Posted 2/18/2020 7:13 PM (GMT 0)
wishing your BIL the best possible outcome
Posted 2/18/2020 9:49 PM (GMT 0)
Hoping for the best IT

This is what we all dread.
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