Hi All!
Hi especially to Tall-Allen. I've been wondering where to find you! 
So the long and short of it is that my husband had HDR mono 5 years ago at UCLA. He was 8 out of 20 positive, with 2 of the 8 being 3+4 and the rest 3+3. Since that time we have had a very bumpy ride as you can see from the graph below. Thus far his nadir is .67, with the latest being .82. I would love to see this <0.5. Any thoughts on these numbers? I would love to hear what you think!
Yours,
Mary
Hi Mary! I've been thinking about you and John. I think the overall pattern looks good. I think the bounces may reflect bouts of prostatitis that relapses and remits (if it were due to PC, it would just go up and up). It's enough to drive anyone crazy! What does Kamrava think?
Thank you, Allen!!
Woops. I missed your question about Kamrava. I'm not sure the best way to contact him since he left UCLA. I just sent a message to his new place asking how best to touch base with him. Thank you!!
All the major hospitals in the LA area share patient records online, so it shouldn't be a problem.
Appreciate this post as your husband’s initial diagnosis is similar to mine. I was recommended by Dimanes at UCLA, after he gave me a full evaluation, to go the HDR mono route. I ended up doing the treatment with a student of his at Kaiser, Dr Wong, who I highly recommend. I had my final treatment on 8/1/19 and I just had my biggest bounce, 2 points at 1 year 5 months, and recently wrote a post here about it. It looks like I’m on amazingly similar path in terms of PSA rise and fall. Would you mind providing me the date of his treatment, his PSA prior to treatment as well as the date of his first PSA test post-treatment ? It’d be great to get a better feel for the exact timing and number of his highest PSA on 1/1/17. That would really help give me a sense of my possible highs and lows to come. Last thing, people have been trying to make me appreciate the bounces — as there is a strong belief through the studies out there that the more bounce there is, and the longer it takes to get to your nadir, the better your ultimate results should be. There are a few different theories as to why but I’m guessing it has to do with the dying off of cancer cells and also the T cells/ immune system going to work and getting more active in the prostate at various stages of the healing process. But even my RO, who is as well studied as anyone I’ve met along the way, says with confidence that there are bounces and they are a good thing but that’ they still don’t know exactly why. I also hear that everyone’s nadir is slightly different. I’m hoping to some day get below 1. Actually getting into the 1’s would be a really nice thing, for starters
Hi There Curtis,
Sure thing! So his PSA was around 7.6 or so, and he had a TRUS biopsy with 20 cores taken. 8 of the 20 had PC in them, with 6 of these being 3+3, and the other two being 3+4. We had the slides re-read by Epstein who confirmed these readings, with the "4" part being less than 5% of the core sampled. As we explored options (and we explored a lot), some doctors thought that there was a chance of ECE. With that in mind, UCLA said they would do HDR+external beam. However, in our searching, we went to NIH where they did some super-duper kind of MRI. We sent those images to UCLA, and they came back saying that they would prefer to do HDR mono now that they had seen the slides. I spoke a long time with Dr. King on the phone (super nice of him to do), and he had seen the slides and recommended the mono route as well. So his treatment was some time in June of 2015 -- two treatments about 5 days apart. The biggest scare was the highest point, of course, as it was so close to being nadir+2. But the next reading showed a big drop. At the high point I was already poking around looking at different types of scans and clinical trials. Tall-Allen can attest to my tendency to research everything to death -- clinical trials, journal articles, etc. I talked to a doctor at JH about scans, and he was open to doing it. But John wanted to wait until his next PSA before going, and it dropped a ton. So... that's pretty much where we're at. It wasn't until his latest reading that I saw that his health portal would graph the readings, so it's kind of nice to see a bumpy ride slowly trending downward. It's like landing in a plane when there's some turbulence. I hope it's like that -- unnerving, but ultimately safe. I sure hope this helps, Curtis!!
One more thing -- sorry, I forgot. His first PSA reading after his June treatment was around September.
Wow — ok interestingly enough because of my 3t MRI, and the concern of ECE, Dr King didn’t recommend HDR monotherapy for me if I was going to do undergo cyber knife with him. There was the added factor that 6 of 12 of my biopsy cores were cancerous, although there were only 2 cores at 3+4 (with the 4 being less than 5%) and the other cores at 3+3. King wanted me to do 6 months of hormone too. It was Dr Dimanes at UCLA who never wavered from his belief that I was squarely an HDR brachy monotherapy candidate. Because of the grey area, I ended up getting a second opinion on my MRI from Cornell Weill Imaging in New York City. Their analysis was that the spot that was previously being read as ECE was most likely camera shake. For the sake of my quality of life and my gut feeling that Dimanes was right, I jumped off on HDR Brachy monotherapy. Very happy I did — just still getting used to all the bounces That said, it is really comforting to see that your husband’s story is so similar to mine. By the way, would you mind providing your husband’s PSA numbers as they correspond with the dates on the graph? Thank you again for sharing!
I'm not 100% sure where the differences between my husband's initial diagnosis and your diagnosis may have differed, but it really wasn't until they saw the MRI that they wanted to do mono-therapy. Other doctors had different opinions, but UCLA was pretty definitive in what they wanted to do. I'm so glad that you're happy with your treatment! In terms of the PSA numbers, if you look at the Y-axis of the graph, that will give you the numbers of his PSA over the years/months. So, for example, in January of 2017 he was at about 3.6. That time period was the scariest part. I say "scariest" in terms of my reaction -- my husband was pretty unconcerned throughout the whole thing. Thanks for writing. Maybe we could stay in touch during our respective bumpy rides.
Thanks again for all of this info --your husband's PSA chart has been something I continually go back to as his bounces are so similar to mine. I've learned from HDR beam specialist Dr. Chris King --and he was very convincing in his response to me-- that we shouldn't worry about these bounces but instead hope for them. When explained the right way, these PSA highs and lows are what we should expect as HDR brachy patients. Perhaps more importantly, there's reliable data that the bounces mean better outcomes three or four years down the road. I was told by Dr. Dimanes at UCLA, who evaluated my case and convinced me about HDR brachy mono treatment, about these bounces weeks before I had my procedure at Kaiser Santa Clara with Dr Wong (a student of Dimanes'). But still you are not prepared when they come. It seems to me that the RO's need to do a better job of getting us ready for the PSA bounces right after our treatment. How is your husband doing now --did he have any side effects and how was his treatment overall? I would highly recommend HDR brachy to anyone and am so glad I spent the months researching and interviewing different doctors so I could be the most well informed on my options and then let my gut guide me.
BCF after 9 years post proton therapy
Six -years post prostatectomy
27 months post 39 sessions of EBRT and completion of 3 years of ADT my PSA remains at <=0.08
12-year post surgery PSA 
Biopsy 2 years post treatment 
