Castrate Resistant Pre-Indicator - Advanced Prostate...

Advanced Prostate Cancer

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Castrate Resistant Pre-Indicator

Deadwood profile image
15 Replies

While you were on ADT, did you notice fewer or shorter term side effects to the shots as your treatment progressed? Could that be an indication that you were becoming castrate resistant? I am noticing that I am not experiencing as much fatigue and fewer hot flashes than I used to. I am about 18 months into ADT. My medical oncologist recently told me there is a sweet spot to stop ADT and I’m wondering if this might be it.

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Deadwood profile image
Deadwood
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Dont08759 profile image
Dont08759

I started my vacation by missing my Lupron shot at 25 months in October. I noticed that the hot flashes did not seem as often. I just thought I was getting use to them. I did not notice a increase in weight but I knew I was losing muscle mass when my Oncologist grabbed my pot belly in the spring and told me “This will kill you before you die of prostate cancer” That’s when I started to play pickleball. I’m patiently waiting for my Libido to return, but so far nothing. I’m surely not looking forward to the return of male pattern baldness. I am most concerned over a increase in my PSA and testosterone. My Oncologist tell me the PSA target increase is 3.5, half of what it was when I started ADT at 7.1. When I see subscribers here freaking at a 0.01 increase, it concerns me he wants to wait so long. I have blood work every 90 days.

CAMPSOUPS profile image
CAMPSOUPS in reply toDont08759

I think you might still have your prostate which despite being ravaged by cancer can give off normal PSA in a blood test. Those who freak at .01 PSA normally had their prostate removed so there should theoretically be no PSA reading or close to it.

Dont08759 profile image
Dont08759 in reply toCAMPSOUPS

yes, still intact. I had 3 NYU urologist tell me they don’t like operating on patients who will be worse off when they awaken from anesthesia. My issue is from the radiation and surgery 33 years ago for stage C rectal cancer.

Yank66 profile image
Yank66

Definitely. Hubby has fewer hot flashes and fatigue is more manageable. He’s been on the stuff for 8 1/2 years with a couple of vacations until “Lupron for life” for the last 3 years.

NRH_Beach profile image
NRH_Beach

when my ADT regime went from (3) meds (METACURE trial) to Zitiga alone, my thermoregulating/heat flash side effects went down significantly. The most recent 2 years on Zytiga did not show any reduced effectiveness (T and PSA undetectable).

dhccpa profile image
dhccpa in reply toNRH_Beach

What two meds did you drop?

NRH_Beach profile image
NRH_Beach in reply todhccpa

Apalutamide/Erleada was included in my arm of the METACURE clinical trial. I had also taken (1) infusion of Lupron before enroling in the trial.

Now I am back on Zytiga

dhccpa profile image
dhccpa in reply toNRH_Beach

Thanks didn't realize Zytiga was used without Lupron.

Horse12888 profile image
Horse12888

Whatever change you're noticing in the SEs has nothing to do with castrate resistance, which means rising PSA with castrate levels of T.

Personally, I didn't experience any real change in SE intensity over my course of ADT, except that depression kicked in hard at about the 8th month. But I think that might have been the realization that I still had 16 months to go plus recovery time, and I was so miserable I honestly wanted to die.

cancerfox profile image
cancerfox

My hot flashes reduced in frequency with time, and they were the least objectionable side effect anyway for me, but all the other side effects of ADT either stayed the same or got worse over my 13 months of ADT. You are probably just getting used to the "fatigue." 🦊

Hailwood profile image
Hailwood

I get used to the fatigue but still work full time. I’ve managed to keep my weight at 185 (5’ 11 “). No hair anywhere except my head and a feeble mousetache, but no libido, but also with no prostate, PSA 0.02 and undetectable T. Alive and kicking and I’ll keep on the Erleada/Lupron like a hockey team rides a hot goalie (no such thing sadly here in Vancouver though!).

London441 profile image
London441

The side effects can be cumulative but as you see they can go the other way too. Baseline testosterone at diagnosis (which sadly too few men know and too few doctors order tests for) can offer a clue of what to expect. Younger men and those with high baseline T will notice the sides more, and those who don’t exercise are affected the most.

dhccpa profile image
dhccpa

Fewer as time went by, but I made major changes to consumption. Four years on Lupron now.

What did your doc mean about the sweet spot of stopping? Are you metastatic or no? Thanks.

Deadwood profile image
Deadwood in reply todhccpa

My MO, in response to my asking how long I had to stay on ADT, said, “Probably between 2 and 3 years.” He went on to say, “There is a sweet spot for stopping.” I took it to mean there is a point between becoming castrate resistant and not, which is the healthiest spot to stop ADT. I should have persued him as to his meaning but I didn’t. I will ask at my next appointment.

My scans did not show any metastasis, however, my cancer was shown to be aggressive and outside of the capsule. Also, a “suspicious nodule” was seen in my right lung. Three CT scans later, the nodule had faded to almost nothing. The result of ADT? I don’t know but I’m happy it’s fading. One year after finishing 45 IMRT’s PSA is <.04.

Mrtroxely profile image
Mrtroxely

Personally I take it asA shit sandwich.

If imgonna eat it, at some point I'm gonna hit the meaty bit.....

Just enjoy the bits of sweetcorn when they get stuck in your teeth.....

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