Report on HDR Brachy mono at UCLA (just finished)

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!

Great report. You will do very well. What you are initially experiencing is normal. I had HDR 4&1/2 years ago and have experienced great cancer control and no side effects. When my docs prescribed it as a treatment they sent me to Demanes' website for research. It was great and I have sent many people to the site for the best info available. Thankfully, I had excellent clinical choices here in Atlanta and did not have to travel for treatment.

Jim, that's a great report - thanks for sharing it with us. You obviously did your due diligence and that's wonderful. I'm sure you went into the treatment with confidence and I'm sure your outcome with be excellent as well.

Please stick around and let us know how you are doing over time. And, now that you have had your treatment, you can be a real asset to new members who may be considering their options.

(Another) Jim

Hello All,

As John's partner, I send my deep thanks to all of you. And especially you, Allen. You are awesome, and it's great to have the chance to get to know you. Thank you.

I wish everyone all the very best in whatever path they may choose. It's my deep hope that everyone finds peace and wellness.

My warm best,

Mary

Hi Dieselman,

My partner told me that he responded, so I hope it's helpful. If you (or anyone else, really) ever want to talk, though, drop me a note and I'm happy to. It was such a stressful thing, and so many people on this forum were helpful beyond belief.

Warmly,

Mary

Great report. The thing about HDR Brachytherapy I found, is that your body will heal from it very quickly. I remember the urgency, but it really seems like a distant memory now.

If you are still following this thread, I was wondering how you are doing and how long the side effects lasted. I am also considering UCLA for HDR monotherapy and was wondering what the treatment protocol was following your procedure, considering that you, like me, are out of state.

Also, was there much discussion before the procedure of the pros/cons of the back to back days procedure versus the week apart procedure. Was one recommended over the other depending on the extent of the cancer?

Thank you.

John, thanks for the prompt reply, and it is great to hear that you are doing so well. Your post has been very helpful to me, and I am sure to many others. In fact, had I not discovered this thread, I probably would not have tried to set up a phone consult with Dr. Kamrava myself. I sent him an email on Saturday and he replied on Sunday, saying his office would call me on Tuesday to set up a phone consult. How nice is that!

After you returned to Pennsylvania, did you simply follow with your PCP or urologist? What follow-up contact did you have with UCLA?

I am in St. Louis where the first radiation oncologist I met with (last Fri) recommended a one fraction HDR monotherapy at 19 GY. I did not get the impression that 2 fractions are even being offered, but I was not prepared to discuss this treatment modality because I had focused my extensive research on the others based on what my urologist had recommended, namely, IMRT.

Since then, I have done a ton of reading on HDR and believe it probably makes the most sense for me. I plan to call some of the one fraction HDR pioneers to see if they will also have a phone consult with me.

Obviously, it would be logistically and financially better if I could get the treatment here in St. Louis, but I now realize that the one fraction HDR protocol is considered experimental by the medical community, although apparently not by the insurance companies. A one and done procedure has tremendous appeal to me, and the results so far appear very promising. But Dr. K said in his email yesterday that they are not doing it because it has not yet been proven, although there is a clinical trial in progress comparing the one versus two fraction treatments.

I will be getting a second radiation oncology opinion from a different facility here in St. Louis on Wednesday.

I am about to turn 60 and my blind biopsy one month ago showed 5/12 positive cores, all 6s. The DRE is negative. My PSA is still relatively low, but did increase from 1.6 to 2.7 this year. My bone scan and CT were both negative. At some point before getting definitive treatment, I will most likely insist on a 3T MRI.

I have an identical twin brother who was just diagnosed, which was the impetus for my PCP recommending a urological consult which led to my biopsy. My brother had three positive cores, one of which was a 3+4. My father was diagnosed at age 77.

The advice I have received so far from the urologist, oncologist, and radiation oncologist is to treat sooner rather than later due to the strong family history. Forums like this one are invaluable for people like us trying to figure out what the heck to do. Again, thank you so much for your input.