Posted 7/8/2015 2:47 PM (GMT 0)
Hi all,
I seem to be in a pattern here of checking back in every few months for my husband. My tolerance for reading about where things may go for him goes up and down and sometimes I just can't.
Anyway, see below. He has been very reluctant to do the early chemo. Interestingly, I had him genetic tested (23andme plus Promethease, for $99 + $5 respectively you can get an awful lot of SNPs, not that they mean much generally) and he's got the SNP variation that is likely to have significantly more serious side effects with taxotere.
Fox Chase recommended the Provenge, and he's doing it, tho local urologist (Lehigh Valley Hospital, PA) said "we don't do that here because it doesn't work". He does fit profile nicely: a bit younger, few bone mets, no visceral mets, lower PSA. So far the experience has been very easy, no side effects except some tiredness day of probably due to Benadryl they give with.
Not only did we get the really nice Provenge backpack somebody else on here mentioned, they're also providing limo transport to/from appointments and assistance with co pays. Holy garbanzos. Actually it's really good for us, I couldn't go with to drive (an hour + away and I had to stay home with our intellectually disabled son).
Dave is still working (4 days) and still having significant daily pain from what is probably TMJ, though might include referred pain from jaw met. We just saw a TMJ specialist who confirmed very tight muscles/jaw ligaments (took forever to get the appt.). He'll adjust night bite guard, make a day one, and suggested pain injections to ligaments. So that might be progress.
He's also extremely tired from Lupron (falls asleep after work, wakes up to eat dinner, falls asleep....) and is completely disgusted about all that, as I know many of you are. But the good part is, he doesn't have other symptoms. When his PSA started to go up we were really worried but it seems to have stabilized for now, maybe just the effect of stopping Casodex.
We're going to Colorado next month to visit Dave's brother. And on this years trip, we may explore the additional medicinal opportunities Colorado has to legally offer. I'm tempted to add an appropriate emoticon but I'm resisting.....
Best wishes to everybody!