Anyone had the 5 treatment proton therapy for prostate cancer?

Hi Dave, Yea I going to be treated at Rochester. That would be great to meet up with you sometime there. I live in Madison WI. It's a 3 hour drive so I will probably have stay around Rochester some of the time during treatment. My wife Jan and I have a camping trailer so we will try to use that for our visits. I 'm having the marker and spacer placement next Tuesday and simulation and MRI on Thursday . I don't know when the treatment will start yet. Hopefully in September. Now I just want to get it done. I'm sorry to here your not getting much sleep. That's no fun. Best regards Dave

@daveywavey We arrive 9/6 and are staying at an inexpensive VRBO. Just found out that Hope Lodge has reopened that gives free lodging to people getting treated for cancer. You might want to give then a call. https://www.cancer.org/treatment/support-programs-and-services/patient-lodging/hope-lodge/rochester-mn/about-our-facility.html

Thanks for the information on Hope Lodge. It looks like I'm going to start radiation the week 0f 9/14 also. Must be the week they treat Daves.. So getting together should be possible.

SBRT sounds like a good treatment approach. For myself I looked at many options short listed HIFU and FLA and chose focal laser ablation. I had 2 treatments one in 2014 and one 2018. The treatments were significantly less invasive then radiation.

@semeon May I ask where you have the FLA in 2014? Mayo Rochester is just starting a study on it. Also would you mind sharing your PSA #'s prior to and after each FLA. Finally could you share your Gleeson score. FLA seems to be a good possible option for treating low-risk native prostate cancer. Mine Gleason score was 4+3 intermediate.

I was diagnosed in 2014 and my PSA was 14 Gleason was 3+4. After the first treatment I did not have a catheter took a Tylenol for minor pain and had a couple rum. PSA dropped also don’t remember have to look on my computer i think it was around 3 or 4. Dr. Sperling at Sperling Prostate Clinic in Florida. In 2018 I had a check with Dr Sperling my PSA was around 6. So I asked Dr Sperling for another treatment (he did not charge me for it). It was a bit more intense and I had a catheter for a week. Dr. Sperling recommended follow up radiation to be safe as well as casodex and Lupron. I took the casodex for 3 months and have been on Lupron for 2 years. When i returned to Canada I saw my oncologist but told her that I did not want radiation. My quality of life is much more important to me then longevity however everyone will look at it through there own eyes. I have been stable for the last 2 years and my PSA has been consistently around .2. The Lupron has had some unpleasant side affects hot/cold sweats, sore joints, fatigue, loss of strength all better then the alternative. You may also want to look at Rick Simpson Oil protocol it’s marijuana oil called “Phoenix Tears”lots of info on the internet. If you send me a private message with your email I can send you a bunch of info. I had to pay for the treatment since I live in Canada. However in the USA my understanding it’s covered by insurance.

Oh yes the RSO is very good if you have nausea or sleep problems. I take it about 8pm. It kicks in about 10:30-11 then I go to bed and sleep a good 8-10 hrs don’t even wake for the bathroom. It works well and has good reviews for anti cancer. I got introduced to it through a friends wife who had terminal lung and brain cancer given a couple months to live. I talked with her daughter who started her on RSO. That was almost 6 years ago now. Amazing!

If you send your Medical Info to Dr Sperling he will tell you straight if you are a good candiate

I'm committed to the SBRT but thanks for all the info.

I completed a 5-treatment SBRT in August 2019. I completed 2 follow-up exams. PSA levels at Feb, 2020 & Oct 2020 remain suppressed at 0.44 (was at 13.7 prior to treatment. By sheer luck, I was treated at the only VA oncology dept in the USA that offered the proton treatment. And, my doctor was a pioneer in the 5-treatment protocol during residency training at MSKCC in NYC. My doc had performed hundreds of these 5-treatment protocols.

PRE-treatment prep is ESSENTIAL (for me 6 visits) The exact, precise 3D imagining & position of your prostate needed to guide the delivery of radiation ton within 1mm of the boundaries of the prostate is crucial. Then, one must carefully follow all instructions as to fluid consumption prior to each treatment to ensure the prostate assumes the same 3D location as was achieved in the pre-prep imaging process. Finally, it is crucial in the pre-prep that the placement of the spacer between your prostate and rectum is dead-on to void harmful radiation exposure to the rectum
Finally, expect near-term urinary and ED issues.
Q - how experienced is your oncologist with the 5-treatment protocol? Equally important - how unified & disciplined is the doctor's pre-pre & treatment TEAMs (and I mean a TEAMs) with the procedures procedures
BK