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Posted 3/29/2018 3:10 PM (GMT -5)
the suspense is killing me, what will the PSA be?
smile

and good news on the ferritin.

Andrew
Posted 7/21/2018 7:02 PM (GMT -5)
Joe,
I too have hemochromatosis and for the last 7-8 years I did phlebotomies to keep ferritin under 100. When I started taxotere in feb, I stopped any of that but now I’m heading back for more phlebotomies. Question is: have you been told that iron will feed the PC? And if so, are your low levels of 20-30 because of the PC? Thanks.
Posted 7/21/2018 7:51 PM (GMT -5)
steve, I have never heard anything about iron feeding PCa. I have had Erythrocytosis/secondary polycythemia for almost 20 years. Mine is due to some toxin causing large cysts in my kidneys, which have been stable since they were discovered. (a one-time poisoning by chemicals I was using to restore a car?) The cysts cause chemicals to be released that tell the bones to produce more red blood cells. Basically a lifelong benign condition, as long as I have phlebotomies every 5-6 weeks. Similar to hemachromatosis and polycythemia vera, but without the more threatening underlying disease.

To the point: Neither high iron nor traces of blood in urine will kill you. My life is highly active. I travel the world, go out dancing most nights (tonight is a storm), and take my jet ski out as many days as possible.

Look, our lifetimes are not infinite...stop worrying and enjoy the time in whatever fashion you enjoy.
Posted 7/22/2018 5:48 AM (GMT -5)
about 3 years ago I had gallstones and had my gallbladder removed. Following the gallbladder removal I developed a hernia. I went back to the surgeon and he said no it was just swelling and fluid, but he could order CT if I wanted to know for sure. I asked for CT. The CT confirmed the hernia but also mentioned some abnormalities in my liver. I asked the surgeon about it and he said just to ignore it, that radiologists often note everything as part of CYA. The following week I had appointment with my PCP for annual checkup and mentioned the CT. He referred me to GI doc who suggested MRI of the liver. These referrals made me very anxious and worried. The MRI showed nothing out of the ordinary. I asked my PCP and the GI doc why they referred me and they both said because we know you—you're never going to be satisfied with our differential diagnosis that it's probably nothing. You want 100% assurance it's nothing, so we ordered the MRI.

TA's right; they take their cue from the patients, especially if they have long history with them.
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