So, get this, I recently got results back from my latest imaging. The two mets on my spine are no longer appreciated, and the iliac met is now an osseous ????, or a boney island. As I was told.
How can this happen? Has anyone else had mets go away?
I'm almost eight years on Lupron, Zytiga added 12/16, then Xgeva started 3/17, BIRM started 5/17. Hey, had to mention it.
There is a trade off though, my PSA continues to creep up at .2 increments every four weeks. I get labs done tomorrow, but last month it was 2.9, up from a nadir of 1. I also had a Braca1 & 2, and ProstateNext test done and both were negative. I would have preferred the Guardant360 test, but I wasn't footing the bill. My next avenue is to see if my insurance will cover an AR-V7 test. I think this will help with my future plans, specifically if ADT is failing. If it is, then I would like to go on Doxetaxol, which would give me a well deserved break from the ADT. What say you?
I appreciate the link, but, it's two years old. At the rate PCA treatments are coming at us, this would be considered out of date. The AR-V7 test would let me know if the ADT is failing, as opposed to the Zytiga. I don't want to be arbitrarily put on Xtandi because of my PSA increase. Now, if it turns out to be the ADT failing, then I would be a happy man. I welcome chemo, just as much as I welcome better quality of life.
Charles for me the date the trials should have published, 2016, is highly significant. The past 18 months has seen a surge of material on testosterone and is it necessary for PCa growth or not? I am in 4th year of ADT and testes fighting the drugs hence pains where I don't want them. Especially as am almost at full castration with 0.03 PSA. Thanks for this extra food for thought.
Welcome back Joe. We have been missing you really for quite sometime. Apparently there seem to be some improvements on you. Hope you will gain more when you start on your chemo rounds.
Best wishes!
Sisira
Mine disappeared through chemotherapy. I don't imagine that you get a break with ADT while on chemo. I didn't.
Joe, Mets do shrink and sometimes disappear from a bone scan, and that is a very good thing. What is the doubling time if it continues it could be 8 or 10 months and you would be at 5 which beleive me is low , I have never in 11+years been below 3.0., Often men get a fall in psa after a bump when continueing on with zytiga,Its Common, Chuck Maack had this happen when he thought he was failing zytiga with low psa numbers, I do not trust the accuracty of many psa test, sometimes there is noise .In this game it is important to get as much out of every drug as you can, That being said my expert advised me , but only because of my excellent liver numbers , that often when zytiga fails it is not being absorbed , and she said to take all 4 zytiga with a high fat breakfast, And that worked for me for maybe 8 months , then i just added xtandi got an immediate drop and at least another 2 years. Then I did chemo, Chemo was not bad and perhaps a guy with your psa may be able to knock it into undetectable range with 6 rounds of docetaxol (Q21) mitigating side effects 6 rounds is not bad , I just did my 11th 2 days ago drove out 100 miles to pick up my daughter from her graduate internship as school Psych, had Dinner and took her shoe shopping , home now. I think if you could get it approved after chemo I would just try xtandi instead of arv7, but hopefully we can get another drop from the zytiga and the chemo sends it top UD ,and you will still have xtandi in your back pocket. I hope we can all get together for some fishing.
Just to make sure we're on the same page here, Dan, the AR-V7 is a yes or no blood test. It tells you whether the ADT is failing or not. I want to bring this up with Yost also, because we're in the same boat with not knowing what's failing.
In the past, if either Z or X failed, you would just be put on the other. This test eliminates this arbitrary protocol, if that sounds right. So, if this test is negative, you go on to the next therapy, if positive, you go right to Docetaxel. I think!
Yes , Joe I know when they test for arv7 it is a blood test, I still would prefer to just see if the xtandi is working in case it does anyway, one never knows.
Now, after some afterthought, I have to reverse what I had said, Dan.
I was way off base here, not thinking that ADT has already failed me, because I'm Zytiga. So, now I'm thinking, what is the AR-V7 really for? I'm at a loss, dazed and confused. Hey, don't bogart that thing.
Joe, Xtandi worked so well for me after getting my AR blasted by 3 years of high dose ketoconozole /HC ,and 16 months of zytiga ,when I got a slow rising psa on it,added E Patch and got more time, and zytiga was new so I did it, and it worked, later studies said Zytiga did not work well with men heavily pretreated with ketoconazole So then I got 16 mos on zytiga and when it was failing I think my psa jumped from 10 to 20, so now since I failed zytiga the xtandi was not supposed to work, but it did, for well over 2 years, anyway I like the move to just do the drug and see if it works rather than getting a blood test at a lab and having a lab tech say if it is whatever. If you do 2 months xtandi and it is working ,its working, just have to get it approved, I wonder if this arv7 test will determine who gets to try xtandi in the future?
Hi Joe, at DX I had some 40 bone mets. Straight on ADT and after 10 months had 8 months if Docetaxel. During break from chemo had updated scans just 1 bugger left. Now still on ADT plus Zytiga. 0.04 this week. I'm with you on the amazing WOW from discovering mets fly away. It elevates the mind and body. My docs were even more excited. Some of them worked on Stampede trials and I was and am a parallel patient.
Have to worry about them returning but that's for anither time...maybe?
Hi Nalakrats,
I think, quite honestly, that gator blood would taste a lot better than Birm. So, I googled BIRM 7x, and I get a bunch of Saab's for sale. I can't find it. I can only find the regular stuff on E-bay, and it looks like Amazon is dry. It's not in the DAARRRK WEEEBBB is it? lol
Joe
Thanks Nalakrats. I had taken a dose without a good shake, and got a mouthful of sediment. Mmmm....good.
Maybe. It cleared up my brain fog, gave me a bit more energy, and maybe helping with a skin issue I am dealing with. The NIH is studying it now. I started Xgeva last November, and Birm in May. My mets went away, I don't really care how, but I'll take it.
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