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This is an update to my earlier post. I had 37 visits to radiation oncology and a month after finishing treatment the PSA had gone from .36 to .04, so they said I was clinically zero, so a success as of this writing. I tolerated the radiation well...they said.
During treatment, my scrotum became sore and enlarged, with my foreshortened penis (courtesy of the original prostatectomy) just about enveloped by scrotum skin. As the oncologist undoubtedly marveled at what looked like a micropenis, he said the radiation exposure was nowhere near the part. So he said "looks like dermatitis...change to a baby product and put cortisone cream on it." Well sir, I was already using a kid's body wash for years, so this short-term inflammation remains unexplained.
I also had a CT scan of my lung area after a previous MRI showed what seemed to be spots on a lung and rib. (Note: I'm a lifelong non-smoker). They determined that the spots were a "benign entity" leaving me relieved that I didn't seem to have remote metastatic infiltration.
I've been on Lupron (estrogen time-release injection...six month dose) for 3.5 months. This drug is supposed to enhance the radiation treatment by reducing testosterone during treatment. I think I have 2/3 of all the side effects, that include a mix of days/nights of sweating, feeling cold, abnormally sore; especially in the back and hip, and slightly swollen legs. Sleeping is difficult because of surges of heat and fever-like chills, that can wake me up. I'm having to wash jackets that are saturated with sweat after just a few errands. I've got rashes in skin folds because I never really dry out, and to use Lamisil antifungal or Cortaid as needed. I also have some unusual elimination urgency (#2 especially), meaning not much warning before having to use the bathroom...not a good thing if you want to go anywhere. Overall with the feeling of hot and cold and flu-like soreness, I haven't been too keen on excursions very far from home.
Your trials and tribulations are heart wrenching to say the least. You have had more than your fair share.
Who is to say you should/of could/of done anything more.
Hang in there as best you can.
Best wishes to you and yours.
Don O.
Bill; As Don says, you have gone through plenty of adversity to date. Hopefully that will soon subside for you. Treatment/side effects for this disease are often worse than the disease other than treatment won't kill you.
After the Lupron wears off, you should get a better idea how the radiation treatment worked. .04 is really good but some of that may be from the Lupron also. Having been through both treatments (minus the Lupron) I can equate with some of your issues. I was very fortunate not to have any side effects from the radiation and so far, - ten plus years post, have none yet. PSA holding around the .1 area. So, hang in there, things can still improve. My lowest number was a .07 so I don't think there is a zero. A nice steady low number is what to hope for when everything settles down and the Lupron effect is gone. Jon.
