XTANDI/enzalutamide or ZYTIGA/abiraterone acetate Being Considered

[Charles (Chuck) Maack]

The following, because of its importance, has been sent by me to all local physicians in Wichita, Kansas for whom I have email addresses.  You are included in order that you may be aware should your treatment be moved to the prescribing of either enzalutamide/Xtandi or abiraterone acetate/Zytiga.  Should that be the case, you could provide the below to your prescribing physician prior to being administered either of these mCRPC medications.

 

Dear Physicians,

I would respectfully suggest that prior to the prescribing of either enzalutamide/Xtandi or abiraterone acetate/Zytiga to prostate cancer patients failing usual ADT and/or showing evidence of mCRPC, that the patient first be tested for the presence of the androgen-receptor splice variant7 (AR-V7) in their system.  This makes sense both in wasted expense to health insurers and patients should the purchase of either of these medications show failure from the onset of administration.  Of course, the toxic effect these medications may have on patients who may also be experiencing cardiovascular issues must always be considered prior to prescribing.

 Please read comprehensive information in the following that outlines the problem of AR-V7 presence and the manner in which to order AR-V7 testing from Johns Hopkins in Baltimore:

  https://tinyurl.com/qbgpezo

 

DISCLAIMER: Please recognize that I am not a Medical Doctor.  Rather, as a medical detective, I have been an avid student researching and studying prostate cancer as a survivor and continuing patient since 1992. I have dedicated my retirement years to continued research and study in order to serve as an advocate for prostate cancer awareness, and, from an activist patient’s viewpoint, to voluntarily help patients, caregivers, and others interested develop an understanding of prostate cancer, its treatment options, and the treatment of the side effects that often accompany treatment.  There is absolutely no charge for my mentoring – I provide this free service as one who has been there and hoping to make your journey one with better understanding and knowledge than was available to me when I was diagnosed so many years ago.  IMPORTANTLY, readers of this paper must understand that the comments or recommendations I make are not intended to be the procedure to blindly follow; rather, they are to be reviewed as my opinion, then used for further personal research, study, and subsequent discussion with the medical professional/physician providing your prostate cancer care.

 

 

Charles (Chuck) Maack - Prostate Cancer Patient/Activist/Mentor

(A mentor should be someone who offers courtesy, professionalism, respect, wisdom, knowledge, and support to help you achieve your goals; would that I succeed)

 

Always as close as the other end of your computer to help address any prostate cancer concerns.

 

"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others."

 

“A good character is the best tombstone. Those who loved you will remember. Carve your name on hearts, not on marble.”

 

   “Sepius Exertus, Semper Paratus, Semper Fortis, Semper Fidelis, Fraters Infinitas”

“Often tested, Always Prepared, Always Courageous, Always Faithful, Brothers Forever"

 

Recipient 2008 Us TOO Intl., Inc., Prostate Education & Support Network 1^st “Edward C. Kaps Hope Award”

Recipient 2012 Prostate Cancer Research Institute (PCRI) “Harry Pinchot Award”

Recipient 2016 Us TOO Intl., Inc. Certificate for 20 Years Dedication/Inspiration

 

Email: maack1@cox.net

My website http://www.theprostateadvocate.com

 

In my Lord I put my trust…

 

[ardee]

Chuck - Genomic Health introduced an AR V7 test in the First Quarter 2018 that is less expensive and has easier logistics than the JH test. http://www.genomichealth.com/en-US/oncotype_iq_products/oncotype_dx/oncotype_dx_prostate_cancer

For our Reluctant Brothers Down Under, you would have to che3ck if it is available overseas.

 

Onward & upwards, rd

[Gary Thomas]

Important to get the first treatment right in Australia, since the PBS will only pay for one of Abiraterone or Enzalutamide or Zofigo.

 

Regards,

Gary

[Patrick Turner]

So from what Chuck says, for abiraterone and or enzalutamide to be effective, there must be AVR7 receptors and that means getting a pathology test done which I have never heard anyone mention before I went on Abiraterone here in Oz. It seems maybe here they just try it and if Psa comes down, it proves AVR7 is present, so no need for the test If Psa zooms up, the.

From what Gary says is that if normal ADT fails, and it is to be extended by abiraterone OR enzalutamide, one or the other, then you are not funded by PBS if you want to try one after the other. But my oncologist said that if I had bad side effects from abiraterone, I could switch to enzalutamide. Its not just a matter of effective Psa suppression, but whether you can withstand side effects. So side effects are used to get from one drug to the other to get a little bit more time. Australia's PBS scheme has limits it seems, and they seen unjust at times, and a fellow I know had rare gall bladder cancer and he needed ketytruda ( I am not sure of name of drug ) but it was same drug as used for breast cancer, but PBS would not pay for it, so cost was huge, but the guy is considered now to have remission.  

Patrick Turner 

[Charles (Chuck) Maack]

Without looking up what I apparently sent earlier, I doubt very much that I said that we "want" the the androgen-receptor splice variant AR-V7 in our system.  Just the opposite.  With its presence, neither abiraterone or enzalutamide are likely going to be effective.

[Charles (Chuck) Maack]

Thanks, ARDEE, for providing that reference! I thought I was up-to-snuff on this subject, but certainly pleased that you provided this reference to add to my information regarding testing for the presence of androgen-receptor splice variant AR-V7 prior to beginning either abiraterone or enzalutamide.

[Charles (Chuck) Maack]

Dear  ardee and others:  In further checking my folders, the Oncotype DX AR-V7 Nucleus Detect test has yet to be approved for coverage by Medicare in the U.S. though approval appears to be coming soon. See: https://tinyurl.com/ybhrlufa. What Medicare has already approved is the different Oncotype DX Prostate Cancer Test.

[ardee]

My understanding from speaking with the rep yesterday is that Medicare coverage is imminent - I think she said May. I do believe some US insurance companies are already covering the Hopkins AR V7 test.

 

It should be noted that this Oncotype test looks for AR V7 in the nucleus of the cell - I am not yet sure why this is important, but it is different to the Hopkins test and important. I believe it delivers fewer false positives - Genomic Health's literature also claims that upto 31% of eligible men will test positive, but only after several 'rounds' of second line AR therapy. Again, I have to research what several rounds means. I take this from their literature - don't shoot the messenger!

 

This test is completely different and should be confused with the Oncotype Dx test. 

[Patrick Turner]

On ‎4‎/‎8‎/‎2018 at 3:18 PM, Patrick Turner said:

So from what Chuck says, for abiraterone and or enzalutamide to be effective, there must be AVR7 receptors

I said this, and it seems what I said is bullshit because the opposite is true, no? I am / was confused.

But I know a guy who did not respond to ADT for more than 3 months, and Cosadex made Psa leap up, and his docs said it would be useless to try abiraterone or enzalutamide because his cancer did not depend on presence of testosterone.

So just what receptors he has or does not have is a bit unclear, but he is on chemo now and that reduced Psa but he has no idea for how long. Doctors here just seem to try things, if Psa goes down, the treatment continues, but if Psa goes up, something else is tried, and there are fellows whose Pca cannot be stopped by anything, and is not delayed for very long.

Patrick Turner.  

[Nev Black]

My understanding, as a man with prostate cancer and no medical experience, (AR V7) Androgen Receptor Variant 7 positive is good.

If a blood test was to be AR V7 Negative that may not be ideal for long term results with Abiraterone or Enzalutamide.

There are many other pathways that can also have influence on the long term effectiveness of various treatments.

This is a very complex chronic illness. 

 

[Barree]

The AR-V7 gene splice - Positive - Negative.

 

As I understand the situation if tests show the Androgen Receptor - V7 Gene Splice is not present (negative), there is a high probability that Xtandi, and Zytiga will work. If it’s present (positive) treatment with these drugs is likely to fail. Reportedly there are a number of compounds/treatments that will impact on the AR-V7 gene splice variant (if it is present) that may in some instances impact on the effectiveness of treatment with both Xtandi, and Zytiga.

[Charles (Chuck) Maack]

You are correct!

[Patrick Turner]

I see my oncologist in 12 days time. I'll ask him about this ARV7 thing. Abiraterone has worked since last July so about 8 mths and Psa is now rising. Maybe enzalutamide might work a bit, I have no idea until I try it for awhile. But onco said if Psa goes above 3, I'd get another PsMa gallium scan. Nobody knows if lympth nodes are full, now letting Pca to grow in in organs, as it does, given enough time.

Doc might say chemo must begin. 

 

I read online that most abiraterone is soon excreted after taking it, and if it is taken with meals, then maybe only 250mg is needed in each dose, and if this is true, then the cost would be reduced by 75%.

And just what happens to abiraterone after taking it? does it have intended blocking effect of adrenal glands etc, but only for awhile, or does the effect last fully between daily doses?

Would not different men have different responses? and why would that be? How could its effects be maximised?

 

And BTW, Hi Barry, how are you? 

Patrick Turner.