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PSA rise, new tests, worried about next steps

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Posted 1/31/2017 9:38 PM (GMT 0)
My post surgery PSA has been putting along with about a 7 yr doubling time since starting treatment with Myers. But in October last year it jumped up 50% in a month to 0.27. I saw Myers in December and he was concerned so I did Guardant360 and Decipher tests. Decipher had an average risk score. The Guardant test showed two defects, one of which is called KIT in circulating DNA. He said this means the cancer is more aggressive for bone metastasis. So I'm getting the Axumin scan next week to find out where it is, if possible. Thanks TA for finding the center at Loyola. While it was in its slow growth stage last spring, a RO at University of Chicago said it was probably still local. My nerve recovery post surgery has gone as far as it can (nowhere). I still have some drips but I only need one lightest Tena pad usually. So, in terms of taking the plunge to radiation now, instead of before I was this continent, I think I've recovered as much as I'm going to. Meanwhile, Myers' plan is for me to start Lupron along with Xtandi for 6 to 9 months because of the Guardant360 result. I'm feeling more nervous about the whole thing. I'm not happy thinking about Lupron ever, or especially long term. The goal is to hit it from two sides and hope that takes care of it, though Myers never says cure. He says others of his patients have done well on this plan. I'm thinking (wondering) if I should also do radiation during or after the drugs in the hope that the defective DNA was shed from a still localized tumor, even though he's hitting it systematically now. At least with this best available scan they would have a better target than when I talked to the RO last spring. And I'm especially hoping the work at Heidelburg becomes available soon. I really like the smart bomb approach best. I'd take a medical tour there with my brother.

Thanks for listening...
Posted 2/1/2017 7:28 AM (GMT 0)
Hello Rigby,
I found your post fascinating, although I have to admit that I have no idea what the scans you refer to mean. What I do know is that I haven't heard of Xtandi being used prior to HT failure AND in conjunction with commencement of HT with the hopes of long term control and avoiding mets. Amazing work being done with the genetic side of things. Please keep us posted. Bombs away!!
Beth
Posted 2/1/2017 11:33 AM (GMT 0)
Hormone therapy, Lupron, is no fun. Kind of an Alice In Wonderland experience, not in a very good way.

However, you can do it. Given that you are dealing with this disease, you end up with a palette of unattractive options.

I did Lupron and Casodex for 3 years. Life's different, but it's ok.

You can do it.
Posted 2/1/2017 7:01 PM (GMT 0)
Thanks Beth,

You can go to Guardanthealth.com to learn about that test. They have a video under the Lunar tab on the website that helped clarify it for me.
https://vimeo.com/168134646/6efa56003d
There is also a long seminar describing their Lunar initiative that will basically build a database that will link genetic defects to patients' treatments to determine which are most beneficial and those that are not.

Myers said I wouldn't find his plan in any standard protocol. His approach is often to attack with more than one weapon at a time. I've been on 50mg Casodex 3X/wk plus all of his other recommendations. He said Xtandi is a super powerful Casodex, so these "hide" testosterone from the cancer, the way I understand it. Lupron as you know will remove testosterone. So maybe the combination is more effective at starving the cells.

I was (still am) concerned about the circulating DNA with the two defects. One Alteration is EGFR at L858R. The report shows treatments that are available for this one, but they are for patients with non-small cell lung cancer. Myers said those side effects are pretty bad. The KIT/L46F didn't have any known available treatments, so Myers is being aggressive now.

I first learned about the Axumin scan on this forum just a few weeks ago. Tall Allen pointed me to the center at Loyola so I scheduled that instead of the regular bone and CT scans I was going to have. At my PSA, I don't think anything would have shown up on those, and maybe nothing will with this one either but I think I'll have the best chance of finding it this way.

I don't know what I'll do with the information once I get it back. Like I said, I would consider radiation if it shows a localized tumor.

Thanks to you too Redwing,
It's good to get some encouragement. I hate to think of having no interest in the "fairer sex", let alone the loss of muscle, hot flashes and all the others. My brother (G9) has gone through Lupron and Zytiga and none of it was a picnic for him. I suppose my treatment will be a lot like yours except for a much more potent "casodex".

I hope Tall Allen chimes in here too.

I think I'm doing all I can without cutting off any future options. As I said in my first post my doubling time has been about 7 yrs until October. If I include the Aug through Jan tests, the doubling time drops to 4.3 yrs. But if I also leave off the very last test, when it dropped back to .23, the doubling time is 5 months.

Maybe I should have jumped at radiation when my psa first started rising after surgery. Way back then in 2014, I hadn't hit the .2 threshold according to my (famous) surgeon, although it would have in a couple months if it had remained on its trajectory at that time. Since then through August, psa had only risen 36% since starting Snuffy's regimen. I was also a long way from satisfactory continence and hopeful about nerve recovery.

Again, thanks to all for being here and helping out.
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