Need a little help 6 days of Xtandi l... - Advanced Prostate...

Advanced Prostate Cancer

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Need a little help 6 days of Xtandi left.

FinalBossMatt profile image
18 Replies

Hey folks, I'm wondering, have you ever reduced your meds by say a pill or two until new ones came in? I just noticed I have about 6 days left and of course the pharmacy that sends it to me has the day off. I get it. I'm just worried about how long it would take to get the next bottle. It took a month to get my first bottle, and I know I'm a new patient and all but hell I don't want to wait long time to get another. I'm sure it was the registration and all that crap, and I'll get it next week. Plus Doc has me on Lupron too so there's that.

Still, it shouldn't be an issue going down to 3 pills a day instead of 4 to extend it to 8 days of medicine correct?

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FinalBossMatt
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18 Replies
Tall_Allen profile image
Tall_Allen

The half-life of enzalutamide is 6 days (range 3-10 days). It is metabolized to "N-desmethyl enzalutamide," which has a half-life of 8-9 days and is also active against prostate cancer. In addition, after taking it for a while, you already have the maximum concentration in your blood. So, I doubt there will be any drop in your serum level whatsoever by reducing the dose to 3 pills for 8 days.

FinalBossMatt profile image
FinalBossMatt in reply to Tall_Allen

Okay I get you, so even if I run out and new ones come say 4 days later, even though I've taken them for a month, it's not going to be an issue?

Tall_Allen profile image
Tall_Allen in reply to FinalBossMatt

Nope. It has a long serum half-life and you already have the maximum quantity in your serum that it can hold.

Kaliber profile image
Kaliber

Are you saying that a pharmacy will send you $10,000 worth of pills in the mail. I have to get mine in person at Kaiser. They wouldn’t think of it. My co-pay for those is $100. Most pharmacies that refill Xtandi have a special reserve of 10 - 15 pills for emergency filling delays. You should stick with the 4 pills a day unwaveringly until you discuss it with your oncologist. If you have supply issues, most oncology pharmacies will make ordering / stocking adjustments to make sure you get your meds on time. You are almost surely in palliative care , medical service providers will usually take great care to make sure you have what you need. If you have a coverage plan paying for Xtandi, most plans won’t let you order a refill sooner than 5-6 days before you run out due to the extreme cost of the prescription.

FinalBossMatt profile image
FinalBossMatt in reply to Kaliber

Yeah I was surprised too. I'm like, "If that's what you do...."

I'm with advent health here in FloriDUH and that's what they do. That makes sense with not wanting to refill all Willy Nilly considering the price of it.

I don't think anyone has an "emergency supply" but like I said I'm still on Lupron too, but once I see I get it on a regular basis, THEN I'm going to get comfortable with the mail-to-pharma company.

Shooter1 profile image
Shooter1 in reply to FinalBossMatt

I've found if I call two weeks ahead, they mail it in time to get to me before I run out...I only take 2 pills per day. 4 pills makes me a complete invalid.....Good luck with your shipment and treatment....Yes, in the mail. No signing anything.

Kaliber profile image
Kaliber in reply to FinalBossMatt

Kaiser has a 12 pill emergency supply in the drug locker just in case they screw up your refill. I’ve had to use it about 4 times in the last 26 months. Xtandi usually isn’t mailed , not only because it cost more than a lot of used cars or motorcycles for one month , but because it has strict temperature exposure requirements. When Kaiser gets my monthly supply , they transport it outside the building in a thermos chest. Look on the front of your sealed box and it says Xtandi has to be kept 68f to 77f with only small excursions outside that, also listed there. One refill I got was left to get too hot and all the pills stuck together and could not be separated without rupturing the pills. That was one of the times I had to use their emergency supply. That prescription can be quite literally “ your life “ in that bottle ... it’s important to make sure the meds aren’t damaged or rendered impotent by heat or cold. There is no possible way to do that in the mail. In deep winter or mid summer, they would surely get damaged. Lupron Xtandi has saved me from hospice and death for 25 months .

Just say’in 💪💪💪👍👍👍

FinalBossMatt profile image
FinalBossMatt in reply to Kaliber

Yeah I do see the 68F-77F temperature thing. I'll ask about it another time.

db1966 profile image
db1966 in reply to Kaliber

Kaiser mail my zytiga!!

Olivia007 profile image
Olivia007 in reply to Kaliber

My dad gets his FedEx so yes some pharmacies send through courier

EdBar profile image
EdBar

I doubt dropping to 3 pills until you get the next script would be a problem. If it were me I’d do that rather than stopping entirely. Some guys get by with a lower dose if their cancer is well controlled, it helps reduce SE’s. Of course they do this with the advice of their MO.

Ed

andy909 profile image
andy909

Where r u located? If in USA I would be willing to send gratis some Xtandi. Would appreciate it if you would cover postage thru PayPal once u receive said Xtandi. I have some extra and am willing to help out a fellow victim of this other plague (prostate cancer).

j-o-h-n profile image
j-o-h-n in reply to andy909

Andy, bless you 9 hundred and 9 times....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/03/2021 9:37 PM EST

andy909 profile image
andy909 in reply to andy909

What is your address. I will mail you some xstandi. I have several months extra supply .

tomtom9148 profile image
tomtom9148

I am also with Kaiser, and my Xtandi pills were $3500 in January to meet my deductible, then $100/month, and free in August when I reached my out of pocket max. I always had to pick them up in person from the pharmacy where my oncologist is, 45 minutes away. I think that you can go with 3 pills for a week from my experience. Also, I have a bottle I can send you for free if you need it. I went back on it after a year of other treatments and it didn’t work, so I have unneeded Xtandi

j-o-h-n profile image
j-o-h-n in reply to tomtom9148

Tomtom, bless you 9 thousand, one hundred and forty eight times.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/03/2021 9:40 PM EST

MyWifeMyLife profile image
MyWifeMyLife

I’ve done that, but I don’t know if it makes a big difference or not unfortunately. My mindset is some is better then none..but then again, is it? Good luck I’m sure it will come in, hopefully on time!

FinalBossMatt profile image
FinalBossMatt

Just wanted to give an update, I'll be getting the stuff tomorrow.

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