Testosterone level while on ADT plus ... - Advanced Prostate...

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Testosterone level while on ADT plus Xtandi

Benkaymel profile image
22 Replies

I've been on ADT (Prostap) since last July and Xtandi since October and my T has remained hovering around 30 ng/dL. Although this is technically castrate level (<50), I've seen several other posts of guys on various hormone therapies with much lower T. Is it normal/typical for T to stay at 30 when on Xtandi +ADT? What T level are others who have been on this for some time?

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Benkaymel
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22 Replies
RyderLake2 profile image
RyderLake2

Hello,

The confusion might lie in the fact that the United States generally uses nanograms/decilitre (ng/dL) and picograms/millilitre, other countries, including New Zealand and Canada where I live, use nanomoles/litre and picomoles/litre. The conversion factors are: one nanomole/litre (nmol/litre) equals 28.85 nanograms/decilitre (ng/dL). I was just about to write and tell you my testosterone for the past ten years has been less than <0.2 (nmol/L) when I realized we might be comparing apples to oranges. Hope that helps!

Benkaymel profile image
Benkaymel in reply toRyderLake2

Thanks but no confusion with the units - see my Bio.

Tall_Allen profile image
Tall_Allen

30 ng/dl is a very low level. Some like to see it as low as 20 ng/dl, but you aren't far off. I think it gets lower with abiraterone because abi hits the other source of testosterone (the adrenals). But enzalutamide blocks any serum testosterone from activating the androgen receptor, so it should be fine. Also, enza may keep any testosterone in the serum and allow it to build up there, which is inconsequential, as long as the T is blocked from activating the cancer. The proof is the PSA.

Benkaymel profile image
Benkaymel in reply toTall_Allen

Thanks Allen.

jim is Lupron with Zytiga. Most recent T 10. Very strange, it jumped to 58 last month but a month later, today, back down to 10. PSA at 18.

Benkaymel profile image
Benkaymel

Thanks Russ. I'm on Xtandi because that's the standard first AR drug for my condition on the NHS. Fortunately the SEs are minimal for me.

SierraSix profile image
SierraSix

just got my T tested yesterday to prepare for my 3 month post SBRT follow up with my RO next week. I’ve been on Lupron for 4 months and my T is 17 Ng/dl. I'm assuming Lupron is doing it's job

Benkaymel profile image
Benkaymel in reply toSierraSix

Yes it is. My T dropped to 25 ng/dL in the first 3 months on Prostap but then I started Xtandi and it moved up slightly to 30 and has stayed there since.

EdBar profile image
EdBar

The goal should be less than 20. Mine usually hovers around 10-15. I have always been treated with Lupron to lower testosterone levels.

Ed

Benkaymel profile image
Benkaymel in reply toEdBar

Thanks. But are you on Xtandi too?

EdBar profile image
EdBar

Yes but Xtandi doesn’t lower testosterone like Abiraterone does, it blocks the receptors on cancer cells.

Ed

Benkaymel profile image
Benkaymel in reply toEdBar

Yes I know. I guess 30 is my nadir on this treatment.

fishrocky profile image
fishrocky

I was on Lupron and Casadex for 6 months...T was <3 the entire time.

Benkaymel profile image
Benkaymel

Thanks, I assume that's ng/dL? I guess we're all different in our response.

cancerfox profile image
cancerfox

Eligard only for ADT for 13 months.....T stayed down around 10.......felt really miserable. 🦊

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

Mel, you're not the guy that my wife rubs your cream on my back once in awhile....Smells like Bengay?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/04/2023 11:10 PM EST

Benkaymel profile image
Benkaymel in reply toj-o-h-n

😄

cancerfox profile image
cancerfox

Wow! You are very lucky and apparently have won the ADT Lottery! I felt like I was inhabiting someone else's body, and a lousy body at that. 🦊

just a comment qualified by one who has never had any ADT but Lupron or Eligard. When I starred in 2004 with metastatic prostate cancer, my Research Professor Medical Oncologist who spent a career in academia - University of Texas Southwestern Medical School, a transfer to University of Texas MD Anderson Medical School, Baylor College of Medicine, Weill-Cornell Medical School, and finally with McGovern Medical School - told me that my goal was to have T @ < 5 and PSA @ <0.1; which I accomplished. If not, we would have to do something different. I never faced something different. What was different then, trials on second line ADT and genetic testing and immunology.

I stopped ADT in February 2010. I’m January 2011 when T hovered at 50, he had me start T replacement therapy. I remained <0.1 PSA and T ranged from 350 to 750 (1200 when I started injections in January 2022) until August 2022. Stopped all T therapy when PSA was 0.3 in September 2022 and T @ 52. Over the next three months, T stayed the same and PSA rose, 0.7, 1.7, 4.0 (UTI) then dropped it dropped to 0.2 in January. During to time I had in order, PSMA PET, NM Bone Scan, (for comparison to last Bone Scan; plus the obligatory Urogram and Cystoscope, and finally a Pelvic MRI with Prostate Protocol. All negative for prostate cancer.

Upshot, old man’s disease...... Enlarged and swollen Prostate, BPH, Infection, and Parathyroid malfunction.

While this may be antidotal to most, it’s my story as one who’s cancer that been tracked at least quarterly since original diagnosis in 2003 - Brachytherapy and IMRT; then a chemotherapy and hormone therapy trial in 2004. I have been most fortunate to live near the Texas Medical Center, jump on the metastatic bone lesions real early, and have the best in academia since 2003. Life is good at 76 years of age,

If I have one piece of advice contrary to some governmental board, and it’s the advice I have given to my 49 year old son, start with annual PSA’s at 40, then make a sound and logical decision as to treatment when it rises to 4.0. It’s the path I took recognizing that my path is vastly different than those who find out that are metastatic upon original diagnosis.

I wish all the best in killing the little bastard cancer cells and have a happy and joyous life.

Gourd Dancer

Benkaymel profile image
Benkaymel

I may have achieved a T of <5 if I was on Prostap alone (who knows?) but I'm guessing that the addition of a second-level HT (Xtandi) upfront that is SOC these days is holding the T up. Of course, having Xtandi means it's not so important to get such a low T because it's an AR blocker.

addicted2cycling profile image
addicted2cycling in reply toBenkaymel

Almost 73yo my T<2.5ng/dL and in 2.5 hours will be going out for a 15 to 25 mile 20+mph paceline bicycle ride. One doesn't have to feel like crap with no *T* and getting there by an Orchie instead of injected ADT seemed to work for me. If PSA next month yields good numbers I'll be back on *T* injections pushing 1,600ng/dL.

Benkaymel profile image
Benkaymel in reply toaddicted2cycling

Good to hear. Actually I don't feel like crap on ADT+Xtandi either, in fact apart from a few hot flushes and a bit of afternoon fatigue, I feel pretty normal. I find the 3 monthly injections no problem at all that I get round the corner at my GPs office.

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