3-1/2 years of ADT +Zytiga, Prednisone, and Xgeva and I've developed Osteopenia, and near Osteoporosis (-2.3) in femoral neck, (-1.5 spine and hip) and fractured T11 vertebra . My thoughts are that this is directly related to the ADT. My question is, with a psa at 0.21 is an ADT vacation a good idea, or bad idea. To me, being immobilized with brittle bones is NOT Living.....and how long will it take for the cancer to return if I do stop ADT? The side effects are beginning to make the "cure" worse than the cancer. My Oncologist is against it......should I get another opinion or two?
At diag. 629 psa 4+5=9, and 4+4=8 Gleason, more 9 than 8
Xgeva at 3 month intervals obviously isn't doing the job for you. It should be monthly.
ADT is lowering your bone mineral density (osteoporosis), but another, perhaps greater risk, is fractures and spinal compression at the sites of your bone metastases. Xgeva can prevent those.
I would continue with the standard of care ADT and use minimal estrogen patches just to add what was removed because of the low testosterone but otherwise would be naturally there.
I believe somebody said that to use estrogen as a primary ADT is contraindicated if you have BRCA mutations. (I am still learning about this) but that is a concern. Therefore test yourself for the BRCA genetic mutation before starting estrogen patches instead of the ADT.
Oncologist believes it's an Osteoporotic compression fracture. Does that mean NOT related to mets? I'm at a loss because nobody ever went over my scans and pointed out where mets was taking place. Only stated "Widespread" bony metastasis. The chest CT was explained in much greater detail, describing "innumerable pulmonary masses" , but giving location as well as additional ground glass nodules and opacities . Is there a way, or person to ask to clarify? so I know ?
"Fragility fractures" are caused by depletion of bone mineral density (osteoporosis) that occurs because of ADT and aging. Other fractures are caused by metastases eating bone. Your oncologist can ask the radiologist for his opinion about what caused your fractures.
Realize, seeking other opinions will yield mostly the same one, because by definition to stray outside SOC is, well, not standard practice. This is true even when SOC gives bad outcomes that some men would prefer to address, by incurring extra risk.
The docs DON'T want more risk, either for you or for them. The goal of their intervention is to slow cancer progression, even if at a cost that lowers QoL beyond the individual's chosen threshold.
I agree with the idea of adding low-dose estrogen (most docs won't) or considering BAT (even FEWER docs like that). But I'd worry that simply stopping ADT would not mean improvement, because T recovery may be slow (or even nonexistent) after that long on ADT.
I totally agree with you about low dose estradiol?or estrogen? patches.
I can still stay with my Degarelix injections.
Good to know the difference between the purpose of the low dose estradiol patches and the patches instead of Lupron.
Thanks for your clear thinking.
I am also an electrical engineer like you and studied biomedical Electronics subjects during my general electronics study.
Did you consult a nephrologist after your GFR dropped?
If you are dehydrated than your kidneys having a hard time working.
Creatine can dehydrate you plus if you cook it it can convert itself into creatinine and if you kidneys don't get rid of the creatinine than your calculated GFR can drop.
I was on it monthly for a year, now every 3 months, it is a great product ypto keep my bones strong and keep the mets from forming. I have arthritis, degeneration in thr joints and stenosis in the spine so this helps me to keep moving.
why is that ALL I should care about? you sound like dr fauci trying to scare (cheat) us all out of another thanksgiving and Christmas with our families. I won't live that way. God gave me a Life to cherish, not to squander
with all due respect, I'm 55 pounds overweight, have high cholesterol, coronary artery disease, a fractured spine and am on the brink of osteoporosis. All related to the cancer treatment. That's what I need a vacation from. How can you be sure "Certain Death" is imminent, how can you be so sure? Living a life in constant fear is not living at all.
Russ, your point g. is one that causes me a lot of confusion. My CO has prescribed me calcium + vit D3 simply because I'm on ADT+ARSI as a precaution and I've seen other articles recommend it, but Tall_Allen has said a few times that we should NOT take a calcium supplement unless we have a deficiency. My blood tests so far show I'm bang in the middle of range for calcium so should I take it or not?
there are also the effects of the drug and the complex way it works and interacts with a lot more than just the testicles. it is not just a switch that turns off testosterone.
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