ARV or AR-V7 testing ? What company?

[baltha]

I am trying to get as much info on AR events so that I might find out if I have AR-V7 variations and such.

Why? I am trying to figure out if the local ARV-110 Clinical trial might work out for me. My oncologist wants me to try the trial and so far the only positive pre-condition which I have is "AR amplification." This appeared in the Genomic Findings section of the Liquid CDX Test ( circulating DNA from blood sample).

When I inquired about AR-V7 information and point mutations, Foundation One responded, "The Liquid CDx test does not have an RNA sequencing component for AR, and we are unable to truly detect ARV or AR-V7 events from DNA only."

As a matter of policy, they do not suggest a company to do such tests . Does anyone have a good experience with a company that does do the test?

Thanks in advance for any shared experiences or company recommendations.

[Tall_Allen]

You can get it through Johns Hopkins:

pathology.jhu.edu/Molecular...

Or from some private companies:

epicsciences.com/ar-v7-test/

oncotypeiq.com/en-US/announ...

[Hoblet in reply to Tall_Allen]

Thanks a lot. John's Hopkins always is reassuring.

[Tall_Allen in reply to Hoblet]

I don't think you have to check that to qualify- they will provide the test for free.

[WildRose6 in reply to Tall_Allen]

I hope you don't mind my question--how does this work if someone isn't being treated at Johns Hopkins? From what I can discern from your links, the Epic Sciences test IS the Oncotype DX AR-V7 test.

From what I can tell, to to get the test, the patient has to:

1) ask his oncologist to order the test kit from Epic Sciences;

2) provider submits preauth to patient's insurance if necessary;

3) provider gets the kit from Epic Sciences;

4) patient goes back to his provider for the draw;

5) provider submits test to Epic Sciences;

6) patient gets results.

I ask this because our oncologist told us that the only way to get an AR-V7 test was to go thru a clinical trial. My husband has not responded to either abiraterone and Xtandi & is now getting Taxotere so it's a moot point for us, but I'm interested in how it works. Thank you in advance!

[Tall_Allen in reply to WildRose6]

You can also just call Johns Hopkins and pay for it. If one has the rare AR-V7 mutation, a test can help you decide to avoid an advanced hormonal agent. But it may be easier to just try it - it will work for however long it does. There are a lot of other AR mutations that also cause resistance. Until we know them all, it may make more sense to try the medicine.

[Hoblet]

That is interesting, I wonder why not covered ? Thanks N

[ctflatlander]

I had it done a couple yrs ago using John Hopkins lab. From what I recall the steps I had to go through were difficul because of where I live. I needed to order the cold shipping container from Fedx (about $50) and get a prescript to get a blood draw that can only go in a special yellow tube as I remember and you need to get it to JH overnight. I called my blood draw station at a local hospital in Vt to make sure that had the correct vials. They assured me that they did. So I proceeded to go to the local hospital for the blood draw with my Fedx box and I wanted to be sure that the box would activate. Great, then proceeded to get the yellow vials and they had the wrong yellow ones. So with an activated cold box, they made calls to another hospital in NH and drove there to get the vials and I wouldn't be able to get it JH overnight. They were nice enough to give the vials but I had to order another Fedx box. JH didn't charge me for the test, Fedx didn't charge me for the second box and I forgot what the shipping cost was. The test was covered for the most part by medicare. Don't know where you are but a big hospital will do all the work for you. Good news my test came back with no circulation tumor cells. Whew.

[j-o-h-n in reply to ctflatlander]

A guy by the name of Murphy once passed a convoluted law.....same guy who introduced me to my ex-wife.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/22/2020 8:31 PM EST

[ctflatlander in reply to j-o-h-n]

Thats history now. How is your energy level now? Mine is scheduled for Feb 17, may delay it if virus is bad. I would think the hospital staff would be vacinated by then.

[j-o-h-n in reply to ctflatlander]

Wasn't history with my ex-wife it was hyste-rory instead. My energy level is right up there with any 98 year old man with a heart condition. I think hospital staff will get the needle first followed by a years supply of free hospital jello in those plastic containers..........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/23/2020 5:02 PM EST