New to posting but time to share

[Dbethune]

Dx July 2017. PSA 143, widespread lesions, Gleason 5+4, stage IV. Mnthly Firmagon brough PSA down to 80 after 3months, 6 rounds of Docetaxyl, came down to 16. Started Zytiga for two months - started having balance problems but came down to 8. Have had 2 rounds of Lu177/Act in Heidelberg. They said to stop Zytiga - balance issue went away, PSA after 1st treatment 2.7 and alk phos down to 106, quick scan showed significant reduction in lesions. 2nd treatment was last week, 3rd scheduled for Nov 22nd. Feeling ok apart from hot flashes.

Hoping for the best

[Tall_Allen]

Does "Lu177/Act" mean you are getting a mixture of Lu177-PSMA-617 and Ac225-PSMA-617?

[Dbethune in reply to Tall_Allen]

Yes - apparently only Heidelberg doing that right now

[Tall_Allen in reply to Dbethune]

I think it's a great idea, especially when there are large tumors - the Lu-177 reaches a greater volume while the Ac-225 increases the cancer cell kill. How were the side effects? Dry mouth?

[Dbethune in reply to Tall_Allen]

So far no SE’s at all - maybe slight decline in Hb and RBC very slightly below normal and previous results.

[GP24 in reply to Dbethune]

I know a patient who got this combined treatment in Homburg/Saar, Germany, as well. They tried to clear the tumor within the prostate this way - I do not think this will work. He presented with many bone and lymph node mets so they decided to start with a PSMA therapy right away.

[Dbethune in reply to GP24]

This is PSMA therapy as I understand it - was initially tested and was strongly PSMA positive so started treatment one week later - now 9 weeks ago.

[Hidden]

Welcome friend! Boy, you’re in the thick of it right now. Many prayers and expect good results and good moments ahead. I liked the giant wine keg dance floor that the king of Heidleburg has in his castle.. Enjoy life! Beyond PC....

[Hidden]

I had a similar diagnosis 3-15, but I’m still here. On cruise control enjoy some good news for now.. you too can get to a better place .. away from treatments , then recovery can begin. Sorry that you are here. But we welcome you .. Take care..Scott🌵

[fhall4au]

Promising news. Prayers and blessings.

[larry_dammit]

Welcome to our rag 😀. Sounds like you are going the right direction on your treatment. Fight the good Fight 😀

[snoraste]

I’m glad to see you are on top of it, and using the latest of what prostate cancer research has to offer. Best wishes and Please keep us posted.

[miina]

Congratulations ! Can you describe the location of lesions you had/have...any visceral involvement ? Also are you hormone sensitive or resistant

[Dbethune in reply to miina]

Spine, pelvis and lymph nodes, no visceral. Don’t know if I’m sensitive or resistant.