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trying to decide on a potential new strategy

podsart profile image
15 Replies

Making a decision regarding making a treatment strategy decision ,if I have a BCR, while on a long-term 2nd/3rd generation “lutamide” monotherapy.

History: After failure on AS, Dr Myers put me on Xtandi monotherapy feb 2016. After immediately dropping to a an undectectable PSA and staying there till 5/31/22. Dr Myers titrated the Xtandi down every 4-6 months, till settling at 3 pills per week of monotherapy . xtandi. After 5/31/22, [after trying ramping up xtandi to full strength, which apparently failed]. I was switched to Erleada monotherapy by my new Dr, as Dr Myers had retired a number of years earlier.

A Possible Alternative Therapy Choices

Trying to implement some form of adaptive/evolutionary therapy to try to avoid the typical slide to castrate resistance. After reviewing a few of the adaptive therapy clinical papers with my dr, he commented that the theoretical strategies of on/off switching of meds, including multiple drug regimens, didn’t take into account the reality of the meds actual on and especially off time of these meds. Lupron was one of the meds used and he commented that as a depot this doesn’t provide a quick off time as desired in a number of these article approached. He seemed favor firmagon, given its rapid “on time”—don’t remember what he said about off time.

So, one strategy suggested would be add firmagon to the current backbone of Erleada continuous therapy and after Pca control is reacquired, adopt an alternating on and off of the firmagon injections. The timing of the on and off to be determined –[could be combined with some PSA trigger level]. Dr thinks this is possibly an adaptive strategy, that is clinically viable.

I really don’t want to face the unpleasantness of that injection , which has to be administered properly is given into the belly I think. Also, if I travel for a few months, where am I going find a place that can give me this special shot? Relugolix provides an oral alternative but the dr says this drug “doesn’t play well with other orals, in my current case Erleada.

Any comments/suggestions would be appreciated.

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podsart
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15 Replies
tarhoosier profile image
tarhoosier

You are my situation in the finest details and I will follow this thread closely.

podsart profile image
podsart in reply totarhoosier

thanks

Ramp7 profile image
Ramp7

I had one shot of Firmagon. They placed an ice pack on the injection site for 20 minutes. It was a breeze.

podsart profile image
podsart in reply toRamp7

what kind of side effects from the firagon did u get?

PSAed profile image
PSAed in reply toRamp7

Can I ask you, was the ice pack applied before or after the injection?

Ramp7 profile image
Ramp7 in reply toPSAed

Before, about 20 minutes on the location of the shot.

PSAed profile image
PSAed in reply toRamp7

thank you.

StayingOptimistic profile image
StayingOptimistic in reply toRamp7

the ice pack was placed before or after the injections?

Ramp7 profile image
Ramp7 in reply toStayingOptimistic

Before, about 20 minutes on the side of the skin. Really numbs it good for the injection.

Ramp7 profile image
Ramp7

It was 3 years ago. My PSA had all of a sudden shot up. The Firmagon knocked it down immediately. Emotionally it was positive. Hence I was put on Lupron and Zytiga with 5mg of prednisone. All good for 18 months but an accumulation of low energy became noticeable. PSA slowly started going up. Completed a Trial at Dana Farber with LuPSMA177. Immediate good response. Then PSA going again. Now onto self administered BAT. I met with Denmeade in Baltimore. Turns out I am a responder. Going into my 3rd cycle. PSA dropped over 50%. I have 3 MO's watching my progress. Along with my Urologist.

podsart profile image
podsart

glad u r a good BAT responder ; u have great oversight

good luck

Ramp7 profile image
Ramp7 in reply topodsart

Most people doing BAT have a high Gleason score. Mine after surgery was (3+4). That may be why Denmeade adopted a 28 day cycle. My first 2 cycles were very similar but I am using Propionate which also washes out quickly. For my third cycle, which I am in now, I have lengthened the High T side by a week, and shall monitor my PSA closely during the castrate phase to record the response.

LongevityAT profile image
LongevityAT

I had an initial double dose of firmagon 2 days ago. As Ramp7 stated and Tall_Allen suggested to me before the injection, ice the areas. And I didn't feel anything. The nurse also had me sitting vs standing which helped to relax the abdominal muscles. All I have noticed so far is a slight soreness at both sites, redness of the skin and small lumps.

Firmagon worked very well for me when I was on it. I hated the site injection pain but I prefer it than the oral. One injection and you are done for a month.

podsart profile image
podsart

thanks to all.

wonder why didnt get any opinions regarding pro/cons of the projected strategy of: keeping a continuous backbone of erleada. also adding firmagon, first cycles that are enough to gain control of the Pca outbreak, then finding some cycling option to simulate a clinically possible simple adaptive/evolutionary Pca therapy. perhaps this is too esoteric.

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