Posted 6/16/2013 8:36 PM (GMT 0)
I've been following this forum for almost 5 years, ever since my husband was diagnosed with Gleason 8 PC at age 58. Never participated, although i feel like i know some of the regular contributors. My husband had surgery first, where he was upgraded to Gleason 9, PSA never went undetectable and increased wiithin 6 months of the surgery. Then radiation, which also failed. Then hormones which worked for about a year. Then taxotere briefly, which barely worked. He took about 5 taxotere treatments, and the PSA went down somewhat, but quickly increased. That was last summer. Then zytiga, which worked nicely for about 5 months, then xtandi, which didn't work at all and made him sick. Then most recently he had samarium for pain and was simultaneously put back back on the zytiga. Either the samarium or the zytiga worked because the pain was eliminated for about 5 weeks. We were actually going for little walks and out to dinner occasionally. And now he is back on oxycodone, OxyContin and can barely walk again. Looks like both samarium and zytiga are failing. Sleeps a lot. Appetite poor. He's lost so much weight and he was lean to begin with. He can't seem to get a break.
He's the most wonderful husband and father, and we both just retired and everything we had planned, the travel, etc. is on hold. We feel we are running out of options. Seeing the doctor at Hopkins this week. And, we have no complaints about his treatment either. That's never been the issue. We knew with aggressive cancer we needed to be at a center of excellence and Hopkins has earned its reputation. We have been investigating clinical trials and Jevtana next, but lately, he has been so debilitated I'm wondering if he will even be eligible for any new treatments that are potentially toxic.
Before he had the samarium treatment we were scheduled for an appointment to participate in the alpharadon early access trial, and 10 minutes after we made the appointment they called us back and said the manufacturer just e mailed them and said the trial was now closed because the manufacturer was experiencing supply chain problems. As I said, we just can't seem to catch a break. So we went with Samarium, the next best choice to treat the pain. Now that alpharadon has been approved by FDA we're hoping at some point that too will be available to him.
I'm just so sad all the time, and feel so badly for him, for us, for our children, for lost opportunities, the whole situation just stinks. I'm doing all the right things, exercising, getting out for brief periods when I can, friends come by, everyone is wonderful, but the bottom line is this isn't going in the direction we had hoped, everything has failed, he barely gets weeks, let alone months, from any new treatment and I'm still having trouble accepting it. You'd think after 5 years I'd be resigned, but at least in the beginning there were options.
Sorry for whining and the pity party but I needed to vent. We're not giving up, it's just that both of us are terribly discouraged. We are fortunate that we can spend time together, and even laugh at times, but we cant get away from this. We're both used to solving problems, getting things done, and succeeding and this thing has repeatedly gotten the upper hand. A crafty enemy. And to top it off, a well meaning but ignorant person recently told me that my husband must not have been taking care of himself because, according to this person, you have to watch the
PSA and if it goes up, that's the sign of a problem and you need to address it. Well of course, we're not idiots, and we know that and that's exactly what we did. My husband did everything right. Regular checkups, watched the PSA, and as soon as it went up he had a biopsy, immediately followed by surgery, and still, here we are, 5 years later, in a terrible situation. That's a Gleason 9, at least for some unlucky men. And, the bottom line is that we have been unlucky. There is no one to blame. It's just pure bad luck.
Thank you for listening. Happy Father's Day.