Has anyone seen testosterone rise on ... - Advanced Prostate...

Advanced Prostate Cancer
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Has anyone seen testosterone rise on xtandi while still on lupron?

joeguy
joeguy

Just wondering if anyone else has seen there testosterone go up above castrate level after starting xtandi. I have been on firmagon and eligard for 2 years and T always stayed around 30. After starting xtandi 3 months ago due to developing castration resistance, my T has risen to 63 which is above castrate level. Not sure if it's worth staying on 3 month eligard shot if it's not keeping me below castrate level. Xtandi has been very good at lowering Psa, now undetectable

48 Replies
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For those who have to be on ADT for life, orchiectomy is a reliable way to keep T levels at around 15 within 5 hours of the procedure. You never have to worry about T levels and don't need the shots any more. Just something to consider.

joeguy
joeguy
in reply to gregg57

Have thought about it, but for some reason my testosterone is difficult to get low. My urologist says he has 4 guys like me that don't go as low as they should on firmagon or eligard. He made the comment he wasn't even sure if he could get me lower than 30 - 35 if he castrated me. I haven't been in to see him yet since my T Jumped up to 63

gregg57
gregg57
in reply to joeguy

Some of your testosterone might be produced in your adrenal gland. Did you ever take Zytiga and measure your testosterone then?

joeguy
joeguy
in reply to gregg57

No, when I went castrate resistant while on firmagon and eligard PSA started doubling every 6 weeks, so I went straight to xtandi

gregg57
gregg57
in reply to joeguy

Sounds like the Xtandi is doing its job blocking your cancer's androgen receptors. Testosterone doesn't do the cancer any good if it can't be used.

joeguy
joeguy
in reply to gregg57

That's why I thought I might just stop the eligard while on xtandi (since it doesn't seem to be working anyway) .The eligard inability to keep the testosterone low migh be a problem if the xtandi stops working at some point though

gregg57
gregg57
in reply to joeguy

A testosterone in the 60s is much better than being several hundred. I'm fairly sure that letting your testosterone rise will cause Xtandi to fail. I'd stay with the Eligard, but best to discuss with your doctor.

joeguy
joeguy
in reply to gregg57

Yes, we have a lot to discuss when I go in to see him in a couple weeks. Have a feeling castration will be his suggestion. Guess it won't matter, nothing works after RP surgery in 2016 anyway

gregg57
gregg57
in reply to joeguy

Xtandi has been used as a monotherapy in at least one trial. I think it had good success, but not sure how good. Something to research and discuss with your doctor.

joeguy
joeguy
in reply to gregg57

I have been very pleased with how well xtandi has worked so far. Hopping for a long run on it

Sxrxrnr1
Sxrxrnr1
in reply to gregg57

I was on Xtandi monotherapy from 10-2017 until 1-2019 with good results. Only trial that I have read on monotherapy took place in several European countries all under same trial. Initially dropped my PSA from 374 to about 10 in a couple of months.

Kevinski65
Kevinski65
in reply to gregg57

Do u know what it means when your testosterone jumps 10 points in 6 weeks? I've been on Lupron and Xtandi. My PSA has stayed .02 but testosterone jumped from below 20 to 29.5. if this continues should I change to degarilix?

gregg57
gregg57
in reply to Kevinski65

I'd keep watching it. T levels can fluctuate and Lupron only guarantees below 50. But I don't see how those T level changes would make a difference if you are taking Xtandi. Best to talk to your doctor about it.

Kevinski65
Kevinski65
in reply to gregg57

Txs

Discuss with your oncologist going back to Firmagon or discuss orchiectomy. Zytiga may be a better choice than Xtandi because it prevents your adrenals from synthesizing androgens.

joeguy
joeguy
in reply to Tall_Allen

I'm not sure zytiga is advised when castrate resistant, is it?

Tall_Allen
Tall_Allen
in reply to joeguy

Yes, it certainly is.

joeguy
joeguy
in reply to Tall_Allen

I remember why I was put on Xtandi rather than Zytiga now. Xtandi is the only one that's approved for non-metastatic CRPC. I guess the insurance companies don't always consider lymph nodes and tissue surrounding the prostate as "metastatic", only bones or distant organs

gregg57
gregg57
in reply to joeguy

FYI: Apalutamide is also approved for non-metastatic CRPC. In a short time, Darolutamide will also be approved for the same indication.

My testosterone for the past 4 years has been < 20 while on Lupron and Xtandi. A few days ago it was 29.5. My PSA was still 0.02 which NIH says is essentially 0. I get a Lupron shot every 4 months. At the time of my NIH visit I had just received my Lupron shot. They gave me a CAT scan and a bone scan which showed nothing new. Can your testosterone begin to rise on Lupron? If so would it be advisable to switch to degarilix?

I wouldn't overreact - it's still very low. Maybe see what happens in 3 months.

gregg57
gregg57
in reply to Kevinski65

I think the fact that you have what is considered to be an undetectable PSA plus no sign of progression is much more impotant than T levels. As they say: you can't argue with results. Bottom line: it's working very well.

Kevinski65
Kevinski65
in reply to gregg57

Txs hope so

Testosterone may increase when in anti androgens. That happened to me when taking bicalutamide and I assume it could happen with enza. The testosterone produced by the adrenals is not been used when in anti androgens and it could increase if it is not rapidly metabolized to estrogens.

joeguy
joeguy
in reply to tango65

I wondered if that may be the case since xtandi blocks the AR pathways preventing testosterone from being utilized

GP24
GP24
in reply to tango65

I am also taking bicalutamide and my testosterone is twice as high as it should be. Since Xtandi is an even stronger antiandrogen than bicalutamide this can be the reason for the high testosterone level. However, I think nobody knows if high testosterone is bad for you.

joeguy
joeguy
in reply to GP24

Its only bad for you when it feeds the PC and makes it grow.

GP24
GP24
in reply to joeguy

Xtandi shall block the androgen receptors (and more) so the cancer cannot make use of the testosterone.

Anyway, maybe it does not matter if you just have sufficient testosterone to feed the cancer or far too much testosterone for the cancer to make use of.

joeguy
joeguy
in reply to GP24

Im thinking of high testosterone being a bad thing when it comes time for the xtandi to stop working. I can see things getting out of hand pretty fast

GP24
GP24
in reply to joeguy

When Xtandi stops working you will no longer take it and the testosterone level will come down again. You may even get an antiandrogen withdrawal syndrome, i.e. the PSA value will go down after stopping Xtandi.

tango65
tango65
in reply to GP24

All androgen receptors are not necessarely blocked by the anti androgens, the cancer may be receiving some testosterone. I believe that is the reason that they use 150 mg of Casodex insteadd of 50 when it is used without ADT. There is some evidence that there is better control of the cancer if the testosterone is below 20. Perhaps this is more important in Castration resistant PC because of the over expression of the AR.

joeguy
joeguy
in reply to tango65

The closest they have ever been able to get my T level to under 20 is 35 ish

tango65
tango65
in reply to joeguy

I had the same problem and they put me in Firmagon. We are waiting to see what happens with my testosterone.

joeguy
joeguy
in reply to tango65

Firamgon worked much better for me than Eligard (but damn those firmagon shots are painful for a few days). I was still on Firmagon when I started Xtandi..... PSA went from low 30s to low 60s. We are now trying 30 day Eligard injection with the Xtandi, but the result seems to be the same.

GP24
GP24
in reply to tango65

tango65, did bicalutamide stop working for you? Any new mets?

tango65
tango65
in reply to GP24

No, it was working but the doctors I consulted decided to stop it. Apparently when Casodex stops working it is because of the AR-V7 splice variant, the same one that stops enza and abi. They think that casodex could make these drugs less effective. I can not have chemo, so they decided to let the PSA increase, get the Ga 68 PSMA PET/CT and if there are metastases treat them with SBRT or with Lu 177 PSMA if it is possible.

GP24
GP24
in reply to tango65

I am currently not aware of a study that determined that bicalutamide causes AR-V7 mutations. In this study:

jamanetwork.com/journals/ja...

they showed the increase of AR-V7 mutations depending on the number of treatments in the CRPC situation.

I refer to this information:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

These studies could not determine a difference if antiandrogenes were used before Abiraterone. This review:

nature.com/articles/nrurol....

states: "Although insufficient evidence currently exists indicating that the prior use of antiandrogens compromises the efficacy of abiraterone or enzalutamide, ..."

tango65
tango65
in reply to GP24

This is one article relating bicalutamide resistant and AR-V7 splice variant:

ncbi.nlm.nih.gov/pmc/articl...

GP24
GP24
in reply to tango65

The article does not show that AR-V7 mutations are more likely with bicalutamide than with lupron. I suspect your doctors just wanted to get you off the experimental track with bicalutamide to the the track they are more familiar with - degarelix and lupron.

GP24
GP24
in reply to joeguy

You could also try Triptorelin/Trelstar instead of Lupron.

I used to take Firmagon. It makes the testosterone level drop like a stone. It also takes a long time to recover when making a holiday.

joeguy
joeguy
in reply to GP24

Im starting to think I will never get a "holiday"...... starting to wonder if actual castration (as opposed to chemical castration) wouldn't be a better way for me to go

GP24
GP24
in reply to joeguy

My personal preference is not to remove the testicles. If you suffer from side effects of the castration you cannot "change the drug".

joeguy
joeguy
in reply to GP24

Im afraid the poor guys have already suffered "side effects"..... its like trying to find a couple of raisins

Shooter1
Shooter1
in reply to joeguy

My jelly beans were removed after last halloween, don't miss them.

joeguy
joeguy
in reply to Shooter1

I'm thinking since the surgery took little joe out of service 2 years ago, and the subsequent ADT made raisins out of my grapes, I probably wouldn't miss them much either

j-o-h-n
j-o-h-n
in reply to joeguy

Well if you decide to get rid of your raisins just let me know and I'll scratch MY balls for you every morning.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/26/2019 7:35 PM EST

Well you know what they say.... when life gives you melons, you might be dyslexic

It will rise with the onset of CRPC so just be careful.

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