Transformer Trial-- Please share info... - Advanced Prostate...

Advanced Prostate Cancer

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Transformer Trial-- Please share information regarding BAT.

SViking profile image
21 Replies

After eight different attempts at taming the beast over the last five years I finally went castrate resistant two years ago. Then came failure with Eclipse Trial (Pluvicto), Provenge and two more rounds of SBRT until recently when RO said no more radiation. Hemoglobin is 10.5 for last several years. PSA is still relatively low but rising fast. Mono Xtandi was also not working with brutal side effects so we switched to Nubeqa last month with no side effects. But also ineffective.

MO approved Transformer Trial which started a week ago with 400 mg shot of testosterone and two more scheduled every 28 days while requiring to stay on Orgovyx. (cancelled Nubeqa while on trial) Within 24 hours I was sporting wood all night...BUT had an immediate energy/strength decline and severe loss of appetite, Normally while on testosterone a decade ago appetite went through the roof while strength and stamina increased.

WTF? Please share thoughts, experiences and concerns.

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SViking profile image
SViking
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21 Replies
Tall_Allen profile image
Tall_Allen

Great to hear!

SViking profile image
SViking in reply toTall_Allen

Since I basically had a poor reaction to the testosterone injection. Why is that great to hear?

Tall_Allen profile image
Tall_Allen in reply toSViking

Libido returned, strength will follow in time.

Cenerus profile image
Cenerus

When did the fatigue and loss of appetite start? Was it literally right away, or did it take a few days to become noticeable?

Cenerus profile image
Cenerus in reply toCenerus

I did a bit of research and found that testosterone therapy will result in fatigue and loss of appetite. It’s counterintuitive but apparently common.

SViking profile image
SViking in reply toCenerus

it took a few days to become noticeable. But it’s quite pronounced now. Do you know if this fades after a while?

Cenerus profile image
Cenerus in reply toSViking

Yes it’s supposed to fade after a while once your body adjusts to the high level of testosterone and the other secondary hormones and byproducts of the high serum testosterone level.

addicted2cycling profile image
addicted2cycling in reply toSViking

SViking, since 2015 I have been ON/OFF/ON/OFF/ON/OFF 200mg Cypionate biweekly injections watching PSA and T levels closely. Following the injection I've tested at T ≥ 1,600ng/dL with very little changes physically/mentally.

Suggest you check both PSA and T at least once a month. If I were you and in your situation I would check twice a month even though it's excessive.

Good LUCK 👍👍

SViking profile image
SViking in reply toaddicted2cycling

While continuing the testosterone shots every two weeks, do you also take a first or second generation med? The transformer trial is just for three consecutive 400 mg shots every 28 days. I’m wondering what happens after that.

addicted2cycling profile image
addicted2cycling in reply toSViking

I am an *outside the box experiment* taking nothing, following no protocols that might exist and playing a *game of craps* for my own satisfaction.

I suggest that all others play by the rules that are being followed. Probable wiser and safer.

p.s. - ACTUALLY - 🤔 much wiser ☺️

NecessarilySo profile image
NecessarilySo

That's very low hemoglobin at 10.5. Mine is below normal at 13,5. It leads to iron deficiency anemia. I'm taking vitamin B12 twice a day lately and iron supplements twice weekly. The anemia seems gradually better but I haven't tested for two months. It could explain your energy decline. Check your blood iron level.

SViking profile image
SViking in reply toNecessarilySo

Agreed. With the hemoglobin so low even mild exercise has me breathless. We’ve tried everything even the direct iron infusions twice to no avail. Also on the B12. Anything else you could suggest to raise the hemoglobin? I was assuming that being on testosterone might raise it naturally.

NecessarilySo profile image
NecessarilySo in reply toSViking

No, it has me stumped too. I guess it takes a long time to recover, if you eat iron-rich foods and take supplemental iron and B12. I am sort of resigned to living with it for the time being..

gsun profile image
gsun

The TRANSFORMER trial looks good. BAT resensitizes the body to enzelutimide.

SViking profile image
SViking in reply togsun

Because of my bad reaction to enzalutimide. We are using Nubeqa instead. Do you think that would serve the same purpose?

gsun profile image
gsun in reply toSViking

Sorry, i don’t know. I have just heard of Enza doing it.

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

Within 24 hours I was sporting wood all night. To quote an old spiritual "Free at last, free at last thank God almighty I'm free at last."

Good Luck, Good Health and Good Humor.

j-o-h-n

Hunterfugi1 profile image
Hunterfugi1

Great...been in similar circumstances w 400 mg (only every 6 weeks) and Nubeqa during the cycle at 21/2 weeks in. Headed into 2and year w PSA level at about 8. No bad SE. and mucho libido and building muscle at the gym at 77.

SViking profile image
SViking in reply toHunterfugi1

Thank you for that information. Are you also castrate resistant?

Hunterfugi1 profile image
Hunterfugi1 in reply toSViking

Good question...since my PSA leveled off and I'm taking Nubeqa periodically..maybe not any more

SViking profile image
SViking

Blood work at two weeks post first 400mg injection showed testosterone at 100, PSA doubled from 12 to 24 and hemoglobin stayed at mid-10s (consistent for the last two years.) Actually feel better as testosterone washes out. Two more injections coming up though. What do you guys think?

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