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G9 w/mets - PSA rising

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Posted 1/22/2016 11:16 AM (GMT 0)
Hello Friends,

First, a positive message....Don't give up my G9 brothers with multiple mets. YOU MAY BEAT THE ODDS! Don't lose hope!

2 of 3 esteemed hospitals gave me a grim prognosis -- almost 3 years ago. I'm doing well.

Severe pain in my pelvis has restored my ability to walk after 10 radiations.

Thanks to Peter Disabelard, I'm on medication that stopped fatigue and dark thoughts.

After ADT, radiation, 6 CHAARTED taxotere cycles at 4 week (not standard 3 week) intervals I am now on Provenge, (Thanks Todd). I get monthly Xgeva, and will probably get F18 scans when Provenge ends 2/11.

What to do now, fellas? I want to conquer this fast psa rise. What is the PSAdt?

Thanks for letting me lurk in your online world where I have learned so much.

Lee
Posted 1/22/2016 2:20 PM (GMT 0)
Lee,

First thing, Provenge has shown significant and impressive benefits for overall survival in trials, but it hasn't been particularly effective at lowering men's PSAs. They mantion that, briefly, on their website. See Provenge and PSA. So that rising PSA doesn't mean the Provinge isn't working.

Are you still on Lupron and Casodex? If so you've been on them for three and a half years and you may be developing a resistance. There are other drugs that seem to pick up working where Lupron leaves off. It might be time to talk to your doctor about digging a bit deeper into the pharmacy.

Let us know what the doctor says about your PSA.
Posted 1/22/2016 8:39 PM (GMT 0)
You have several options. There may be clinical trials where you can get a combination of Xtandi and Zytiga, or novel hormonals like ARN-509. An estrogen patch may be effective too. Xofigo may be worth looking into if your WBC counts are back up. You can do more Taxotere, or switch to Jevtana. Your PSADT is about a month.

- Allen
Posted 1/23/2016 4:28 AM (GMT 0)
Peter: Thanks for the link. My MO stopped casodex after 2nd PSA rise in Oct 2015. My 3 month Lupron shot will expire next month. It looks like IMRT worked for you. I'm going to the Abbreviation/Definition page to discover the definition of AUS & IPP, and VED. I wonder if there's a reason you haven't checked your PSA in awhile.

Allen: If my PSADT is about a month, then I hope MO moves quickly. She mentioned the ARMOR3 trial with galeterone as a poss for me. I'm going to look into ARN-509. I may ask for a genomic profile to find a solution at molecular level. I'm curious why you (and MO) didn't mention radiation, as it seems a lot of guys in my situation receive on HW.

Thanks Peter and Allen........Lee
Posted 1/23/2016 6:43 AM (GMT 0)
Patiently,
I did mention radiation - that's what Xofigo is. You can also get palliative radiation as needed - but you know about that already. There have been some tests of primary prostate radiation with the goal of reducing the total tumor load. We don't know yet if there is any benefit to it, and it's a lot to go through, especially considering what you've been through already.There is no other kind of radiation that makes sense for guys in your situation - I haven't seen anyone in your situation (multiple mets) in HW or elsewhere receive any other kind of radiation.

The only kind of genetic tests that might be useful to you would involve biopsy of a metastasis or highly specialized blood work. They'd be looking for unusual biomarkers. Usually this kind of thing is done in the context of a clinical trial. If you signed up for a trial of, say, a PARP1 inhibitor, for example, they'd look for the presence of PARP1. Same with, say, AR-V7. These are not widely available tests - usually only the university running the trial can do the test.

ARMOR2 is a good one. VT-464 looks promising as well. There are several hormonals in various stages of clinical trials. There are many growth factor inhibitors in trials as well. I think the Provenge will exclude you from trials of other immunotherapies. Where are you located?
Posted 1/23/2016 5:21 PM (GMT 0)
Lee,

I'm a G9 with multiple lymph and bone mets, dx in March 2014 and since then I've taken the kitchen sink approach - triple HT that started with Lupron, Casodex and later Avodart. Added Metformin and later after seeing Dr. Myers in July switched the Casodex to Xtandi even though first line HT was still effective. Had my prostate and several pelvic nodes radiated in November 2014 to reduce the tumor burden - a move that Dr. Myers said was a wise thing to do. Recently had 6 rounds of Taxotere while still hormone naïve per CHAARTED. I also receive monthly Xgeva. Changed to Med diet with no red meat or dairy along with several supplements recommended by Myers. So far so good, PSA has been <0.015 for several months, the lowest its ever been, and recent bone scan was clear. Fingers crossed that it stays that way, I have my next appt. with Myers next week to see where we go from here.

Ed
Posted 1/25/2016 4:29 AM (GMT 0)
Allen,

I'll check into Xofigo. How and where is a tumor load reduced (mets or prostate) Do you have a preference for Radium 223 or Xofigo?

I appreciate you telling me my doubling time. It's pretty scary, I feel like I need to do something fast, but I probably have to finish provenge first (done 2/11).

Ann Arbor. I'm currently pleased and impressed by the ever-kind Dr. Elisabeth Heath at Karmanos in Detroit for past 2 years. Prior to that I was at Univ of Michigan, then St Joseph Mercy Hosp. The reason I left UM for Karmanos is because Dr. Hussain hasn't found any evidence of Provenge effectiveness so they don't offer it.

I'll check more into your PARP1 suggestion. It appears now that only about 5% of patients in trials get good results from Galeterone.

Decisions, decisions.........

Patiently1
Posted 1/25/2016 6:04 AM (GMT 0)
Xofigo is the brand name of Radium 223 Chloride.

Tumor load reduction means taking out the prostate, either by surgery or radiation. It works for other kinds of cancer, but no one knows if it helps much for PC, or if it even slows it down. There are a lot of associated SEs, of course. It's worth a discussion with your oncologist, but between that, and a clinical trial, I think a clinical trial offers better odds.

Some clinical trials for the advanced hormonals may want you to try Xtandi or Zytiga first, and some disqualify those who have taken them first, so check the specs carefully. There is a trial for both Xtandi and Zytiga at the same time,you might want to check into:

Enzalutamide With or Without Abiraterone and Prednisone in Treating Patients With Castration-Resistant Metastatic Prostate Cancer

This one combines Xofigo and either Zytiga or Xtandi:

A Randomized Phase IIa Efficacy and Safety Study of Radium-223 Dichloride With Abiraterone Acetate or Enzalutamide in Metastatic Castration-resistant Prostate Cancer (CRPC)

Karmanos does a lot of clinical trials, as does U Mich.

my links were broken

Post Edited (Tall Allen) : 1/26/2016 5:54:09 PM (GMT-7)

Posted 1/25/2016 1:08 PM (GMT 0)
Lee,

I'm not sure how well these are covered in the abbreviations thread. I'll go check but just in case they aren't there...

AUS - Artificial Urinary Sphincter
IPP - Inflatable Penile Prosthesis
VED - Vacuum Erection Device

I should try to edit my profile to indicate that I do get my PSA checked every three months and it has been undetectable since my adjuvant radiation. Actually, the only "detectable" result I have gotten since surgery was at seven weeks when the reading was 0.01 and my surgeon hectored the lab to give him the actual reading. I went into post-surgical treatments -- Adjuvant Radiation Therapy (ART) and Triple Androgen Deprivation (ADT3, AKA belt-and-suspenders HT) -- based only on my adverse surgical pathology report.

Yes, the IMRT seems to have worked for me. The combination of therapies has some side effects -- thus the artificial sphincter and the penile implant -- but it seems to have worked well for disease control ... at least so far.
Posted 1/28/2016 8:56 PM (GMT 0)
Patiently1,

As if in answer to your question about radiation of the prostate after mets are detected, I just read the following Korean study you may be interested in. It's just a retrospective analysis of a very limited data set, and not a prospective randomized trial. They looked at patients with distant mets at initial diagnosis. 3-yr overall survival was 69% among the 38 men who received the cytoreductive prostate radiation vs. 43% among the 103 men who did not. Because this wasn't randomized, the men who didn't get the prostate radiation were older, had poorer status, higher Gleason scores, higher initial PSA, and were more likely to have 5 or more mets -- in short, more likely to die sooner anyway. While only age was significantly different, it paints a picture of sicker, more advanced men being less likely to get the radiation, indicating selection bias. On multivariate analysis, those other factors did not fully account for the difference in survival, however.

You may want to send the study to your oncologist for further discussion.


Does Radiotherapy for the Primary Tumor Benefit Prostate Cancer Patients with Distant Metastasis at Initial Diagnosis?

- Allen
Posted 4/9/2016 6:04 PM (GMT 0)
Allen,

Fascinating stuff. I've always studied your links and observations with eagerness. Thanks.

Patiently1
Posted 4/9/2016 10:10 PM (GMT 0)
Patiently 1,
Thanks for this post, was just wondering what your initial PSA was at DX time back in 2013?
Looks like you are exploring all your options, keep vigilant and keep the faith!

Allen and Peter and Ed-Bar , thanks also for all your info and links, very interesting to me since I am a G-7 with multiple mets.
Dan in rainy So Cal
Posted 4/10/2016 12:27 AM (GMT 0)
Ed-Bar your results are crazy good
Posted 4/10/2016 2:27 AM (GMT 0)
You may want to do a forum search for a poster RedWing57 who is also treated by Dr. Hussein. She had him do the full 3 years of ADT2 Lupron plus Casodex and he started his Luporon vacation this month. He is Gleason (5+4) and the originator of the thread for Gleason 9 crew

www.healingwell.com/community/profile.aspx?f=35&m=3182035&p=168283

www.healingwell.com/community/default.aspx?f=35&m=2863652

The thread was so successful that it exceeded forum capacity and the first post has been updated with an imbedded link to the continuation of the thread

www.healingwell.com/community/default.aspx?f=35&m=3182035
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