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
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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.
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.
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.
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.
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.
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..
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.
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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