Xtandi Experiment: I just came into 1... - Advanced Prostate...

Advanced Prostate Cancer

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Xtandi Experiment

gusgold profile image
23 Replies

I just came into 11 bottles of Xtandi from a family whose father died. I plan on doing Xtandi BAT. My T level is 900 + or -...So it is Xtandi on for 3 months then Xtandi off for 3 months...Xtandi BAT

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gusgold profile image
gusgold
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23 Replies
Daddysdaughter profile image
Daddysdaughter

Your trying your own experiment on yourself! Please keep us updated!!

ctarleton profile image
ctarleton

Legality/liability issues?

erjlg3 profile image
erjlg3

Good wishes for the BEST outcome gusgold.

😶 Jackie

Dan59 profile image
Dan59

Gus, I think you are joking, as usual, because I know you are smarter than that. UD PSA , off therapy, t recovered to 900,aint broke dont fix it.

Desperate times, desperate measures?

rococo profile image
rococo

Bat (bipolor androgen therapy) with a strong blockade, you might be on to something. Keep us informed. Rocco

rococo profile image
rococo

You can also titrate the dose to the extent of cancer and the 11 bottles would last many years

podsart profile image
podsart in reply torococo

suggest checking the expiration dates; think each bottle has a 1 year till expiration

in reply topodsart

Unless it is an antibiotic, I am skeptical of expiration dates.

in reply topodsart

Expiration dates have been disproved for a bunch of meds. Sealed pills don't tend to deteriorate. It's a Big Pharma scam to boost sales. My current bottle of Zytiga is good til 4/19. And these are arbitrary dates set by the FDA. Probably being lobbied my big pharma. Just saying.

cesanon profile image
cesanon

I hope you are doing this under the supervision of an Oncologist. It can't be that hard to do so. And it is really really unwise not to do so.

There are just far too many nuances for you not to get. Just for starters what the dosage should be... and when and how to vary that dosage.

There is a lot of non-intuitive decision making here. And an internet education is just not up to the task.

I wasn’t aware they prescribed multiple bottles. My pharmacy only issues a 30-day supply. You’re sitting on $11,000 of meds. Plus, the insurance companies are tighter with their money than to do that.

I am with Dan59, I think you’re joking.

in reply toTRinVirginiaBeach

Hi TR,

For your co-pay scenario it's $11k, for others it's much more. It would be only $400 for me. (for 11 months) But other guys here pay a couple grand a month. I wonder who's robbing who?

TRinVirginiaBeach profile image
TRinVirginiaBeach in reply to

Joe, Oops, I was off. Xtandi brain fog. $10,000 monthly is the retail for Xtandi. So, in fact, it’s $110,000 street value.

I stand corrected.

Luckily, I have two insurance providers and I have max’d both out for this year, so I have no out of pocket until it resets in January.

So, back to the original point, how in the world did he get a insurance company to front $100 grand for a medication that is dispensed daily?

I’m not trying to be snarky, but, I find it hard to believe.

BUT, I have been wrong before and if so, I apologize for publicly doubting someone on this forum.

TR

in reply toTRinVirginiaBeach

Well, so far, Gus hasn't replied. I wish he would. I feel bad for guys who have to pay through the nose, for the meds I get for a 35 bucks. WTF Penn State gave up a TD.

Publicly doubting? No way. This is a learning curve we all have to adapt to.

Yoo-hoo Gussy? You yanking our chain again?

leswell profile image
leswell

Hey Gus, Lucky you! We were about to investigate BAT, but Leswell indicates he’s ready to proceed with the subcapsular inasmuch as the surgeon promises it’s a BOGO. We count on your (and Les’s) sense of humor. Sort of anonymous

in reply toleswell

This is good. One dictionary check, and one Google search, and now I am LMAO. Gus is one lucky guy alright.

gusgold profile image
gusgold

Nal,

7 months off lupron PSA .24 and T around 900.....I ran the protocol past an Onco at Mayo and he said he was not opposed to the idea, but all he could offer is the protocol lupron/zytiga when my PSA reached 1. I like Xtandi/Bat...for 3 months Xtandi blocks T then for the 3 month off cycle the PCa is exposed to T since T was never lowered like it is with Lupron. Run this by Patrick, I bet he would like the protocol. I plan to start when the PSA reaches .5

Gus

Dan59 profile image
Dan59 in reply togusgold

Gus, I am glad to hear you will be followed by an MO at Mayo through this. I understand you will be attempting to resensitize the AR to ADT. Good Luck, I wish You the best.

Dan

gusgold profile image
gusgold in reply toDan59

Dan,

you miss the point. First I am not followed by anybody and second I am trying to develop a protocol that prevents castrate resistance...at this point I have no problem with AR sensitivity and want to keep it that way

Gus

rococo profile image
rococo in reply togusgold

Of course this is not a protocol assigned by the ncii so youron your own..I also had a t of 900 and used casodex blockade in off cylcle of lupron but titrated the dose from 3 to 7 50mg per wk and yrs later 3 50mg pills per day. Never let psa get above 8. I have a prostate. A dr slovin in nyc with this on off cycle cycle for psa reccurrence low met. Dr israel barken titrates the cas. Its your choice. I got 7 to 8 years out of the later. Now I understand that extandi is 10's stronger so best of luck on your adventure. Rocco

Dan59 profile image
Dan59

My Expert MO said that Xtandi is good long after the expiration date, you have it for the future,if you do not use it now.

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