Posted 6/17/2015 5:41 PM (GMT -7)
Just finished HDR Brachy here at UCLA and wanted to share my story, and make myself available if people have questions. I haven’t posted yet but I’ve benefited enormously from posters to this forum (and others), mostly via my wife Mary (pjr) and so want to put my story out there in case it’s useful. I just emerged from treatment so this is an early report.
I’ll talk about my journey to this point in a moment, but to relay what just happened: I had HDR Brachy with Dr. Kamrava (who works with Dr. Demanes) at UCLA. We came all the way out here from PA because of their expertise and am so happy we did. The staff was incredibly helpful and accessible, even after being rather pesky with our questions. Dr. Kamrava did two phone consults before we even decided to come out here, and he was available by phone as well after we made the appointment.
We stayed at the Tiverton House across from the hospital, which I can’t recommend more highly. As soon as you start thinking of coming out here (if you’re not local) make a reservation (they’re very hard to get apparently). They have kitchen facilities, comfortable open areas to lounge around (with soft cushions, a very important perk when recovering from this) and shuttle service.
We did two fractions instead of 4 or 6, so that meant I didn’t have to stay overnight each time. The treatment began in the morning and the discomfort/pain was fairly minimal. I mostly felt crappy the day after because of a kind of anesthetic hangover, but I haven’t even taken Tylonol since my treatment. My paraneum is still swollen (this is day 2 after the second treatment) which means I have to avoid hard chairs, but anything cushy is just fine. I have urinary frequency (about once an hour or so) but no urgency (I can hold it if I need to) and even the frequency is noticeably improving. Started taking Cialis and already had erections, but I’m not sure how that will go and certainly don’t know how typical this is.
After each treatment it took a while for me to urinate, which has to happen before they let you go home. In both cases, I needed about 2 hours to relax, but each time I did it and got sprung for the night. Was able to eat comfortably that night (soup) and normally the next day and thereafter.
You can tell by my signature what my profile is. But rather than trying to generalize from my case I just wanted to invite people who might have practical and other questions about the treatment to post and I’ll try to respond.
For fear of making this even longer, I won’t chronicle my journey here, accept to say we (Mary and I) took two solid months and saw numerous doctors before coming here, including the following: UPenn (David Lee), Johns Hopkins (the multi-D clinic they do), Sloan Kettering (Zalefsky), Mount Sinai (Tewari), Georgetown (Collins), and the Nat. Cancer institute (Pinto, though we went in considering a trial they were doing involving immuno-therapy and surgery). I also had phone consults with Moran (Chicago), Katz (Flushing), and King (here at UCLA). And of course my wife Mary did a ton of research on all this (and benefited tremendously from all you folks – thanks especially, Tall Allen!!).
I wouldn’t recommend taking all the twists and turns we did to get here, but I am very happy with how we decided and with my treatment. But I know it’s not for everyone.
So if you have any questions let me know. Otherwise I’ll keep you folks posted. Thanks helpful forum!
57 yrs. old (2015)
PC Dx 3-12-2015
PSA: 6.2 (11-2014); 5.8 (3-2014); spiked to 9.8 (5-2015); then back down to 6.0 (6-2015)
Biopsy: 8 cores out of 20 positive
HDR Brachy mono therapy at UCLA (Kamrava) – 6-9-2015 and 6-15-2015