Anyone taking only 1-40 mg. of Xdandi ? - Advanced Prostate...

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Anyone taking only 1-40 mg. of Xdandi ?

IBstan profile image
16 Replies

Is there anyone taking less that 4-40mg. pills of Xtandi ? I started taking only 2-40mg. pills after my psa dropped to less than 1. for 3 mos. ... then took only 1-40mg pill for another 3 mos. ... then took a vacation from Xtandi for 6 mos. until my psa started to climb for 4 mos. up to 10.5. Now I started only 2 - 40 mg pills of Xtandi and the Psa dropped backdown to less than 1 in 45 days. I'm considering dropping down to 1-40 mg. for 3 mos. and then take a vacation from Xtandi again.

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IBstan
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16 Replies
Escudilla profile image
Escudilla

That's an interesting approach. A Xtandi vacation.

I did 4 for 2 months, 2 for 9 months, 4 for 1 month, 6 for 1 month, then 2 for 5 months. My PSA was undetectable for the first 8 months, but has been steadily rising to 0.34 since.

Grumpyswife profile image
Grumpyswife

I believe they are using this approach at Moffitt in Florida and there was an article about it maybe in the Wall Street Journal published in January, 2020.

JuanVV profile image
JuanVV in reply to Grumpyswife

I'll try and find it online, sounds very interesting.

Grumpyswife profile image
Grumpyswife in reply to JuanVV

pressreleasepoint.com/new-a...

Hope the link works. It's Dr. Robert Gatenby's program at Moffitt. Supposedly starting and stopping extends life by perhaps 11 months if it works as prescribed.

JuanVV profile image
JuanVV in reply to Grumpyswife

Thanks so much!

landcrab profile image
landcrab

I have been on Xtandi for two years, my psa has been 0.03 most of the time. I asked my oncologist if I could reduce the dose. Her reply was why change a winning formulae. However I have dropped the dose to three tabs per day.

JuanVV profile image
JuanVV

Sounds like a good approach. My husband's been on 4 for quite a bit, more than a year. His Psa started to go down only 3 months and then has gone up again ( from 60 to 13 and back to 19) so for the moment he is advised not to change anything. I think I read somewhere that if you stop Xtandi it initially goes down?

JuanVV profile image
JuanVV in reply to JuanVV

By 4 I meant the full 120mg dose

EdBar profile image
EdBar

I was on 160mg (full dose) for 2+years, PSA undetectable, then SE’s got to be pretty bad so Dr. Sartor recommended to lower the dose to 80mg. PSA remained undetectable for 2 more years. I started having BP issues likely caused in some part to Xtandi so having been undetectable for over 5 years Dr. Sartor recommended to stop Xtandi and monitor PSA closely. 3 months later I had the first detectable PSA in a long time .008 - I get the ultra sensitive test. So Sartor has me restarting Xtandi, he said 80mg usually does the trick, but I’m gonna go full dose for a week then 120mg for a week then down to 80mg and monitor PSA closely.

Ed

PhilipSZacarias profile image
PhilipSZacarias

Hello IBstan,

Congratulations (as others in this forum have as well) in unwittingly applying evolutionary game theory to the use of second generation hormone therapy for the control of PCa. A similar trial was conducted by R. Gatenby using abiraterone. I would encourage you to peruse the following literature as well as others published by Gatenby:

ncbi.nlm.nih.gov/pubmed/291...

ncbi.nlm.nih.gov/pubmed/302...

ncbi.nlm.nih.gov/pubmed/309...

The period of abiraterone effectiveness was nearly doubled by adjusting the dosage and timing of abiraterone administration according to PSA response. The object was to reduce the selection pressure on PCa mixed colonies of hormone sensitive and hormone insensitive sensitive clones so that the former where not killed off but remained in sufficient numbers to compete with the latter for nutrients (and maybe space). Abiraterone is stopped when the PSA returns to a value that is ~25% of the original value at the start of therapy and to cycle according to PSA trends (according to my understanding). Reducing dosage by 50% to 75% may achieve a similar result, but this was not studied. There are other papers indicating that a third drug should be used that operates by a different but equally effective means so that the PCa is prevented from achieving resistance to any drug. It is worth following this line of research, although I will readily admit, it is very difficult to read and gives me headaches. Cheers, Phil

tarhoosier profile image
tarhoosier

I was on an off treatment holiday for nine months and psa at 0.2 and my MO tried one xtandi per day, no other treatment, and I went to undetectable. After fourteen months psa crept up and MO went to 2/day for 21 months. Psa began creep and went to four/day four months ago which is where I am now.

Grumpyswife profile image
Grumpyswife

Even if it works for some people it saves the expensive med and damage from side effects which might be permanent. Unfortunately my husband had difficulty tolerating full dose and had to cut to half. Also he never got below ~5 PSA before it started rising. One could add Indomethacin to Xtandi which we did not get to. MO didn’t want to.

kjscobel profile image
kjscobel

I started on Xtandi last May when my PSA was over 9.5. Because of previous liver issues on Zytiga, my ONC started me on 1 tablet of Xtandi per day. Further testing showed no impact on my liver and after a few months my PSA dropped to the 1.5 range. At that time I had to acquire a new ONC, and he raised my Xtandi dosage to 2 tablets per day. My PSA then was 0.95. So smaller dosages can be effective.

Kevinski65 profile image
Kevinski65

Why are u doing this? Is it the cost of xtandi?

j-o-h-n profile image
j-o-h-n

Hello IBstan, IBj-o-h-n

Would you be kind enough to tell us a little history about yourself. Age, Location, Treatment Location, Scores (psa/gleason), Treatments to date, Doctor"s names(s).... Thank you... All info is voluntary but it helps us help you and helps us too. If you respond you may want to add that info to your home page.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/04/2020 6:21 PM EST

billymc4 profile image
billymc4

There are some medications which make xtadi levels very high.I am on Plavix and 160 mg a day turned me into a zombie. I now only take 80 mg going ok. Plavix with xtandi is risk combiation on high doses. There are other meds which can potentiate it.

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