Salvage Radiation Update

[bitittle]

On June 30th I started Salvage Radiation for rising PSA 3 years after my RP. I have 15 treatments completed out of 35. I am 52 years old and consider my self in good shape running 25+ miles a week. So far the only side effects I have experienced is slight fatigue towards the end of each week of treatment and more frequent urination. I can't quite get 8 hours of sleep without getting up to urinate. Once I am up I find it tough to get back to sleep, so that may account for some of the fatigue. I am up at 4:30 most mornings running 3-5 miles. The exercising actually helps with the fatigue. I have been on a mostly vegan diet since my RP and have not had to change the diet during the radiation. I am sure there are others out there searching for information on radiation side effects, hope this helps put things in perspective.

I am remaining positive knowing my chances of slowing the PSA increase is a 50/50 chance for a Gleason (4+5), epe, N0x, Dx, SVI, negative margins condition. The salvage radiation treatment was started at a PSA level of 0.182.

I don't know what the future holds nor do I worry about it much. Its more important to live for today and not miss out on what this world has to offer. We are all fighting the fight, many of you are experiencing a far tougher fight than I. We are a "Band of Brothers" that never wanted to join the band, but here we are so let's keep pushing forward.

In the great words of Jimmy Valvano "Don't give up...Never, ever give up."

Hope this helps the "Brothers" considering salvage radiation.

[Dr_WHO]

Thank you. I had some concerns about starting radiation treatment. I will start salvage radiation in about three weeks. My story, I had G of 8 (4+4), T3N1Mx, ductal prostate cancer (very rare) with 1 out of 15 pelvic lymph nodes being "100% cancer". Had Da Vinchi surgery in April 2016 (had to convince the surgeon to operate) and started hormonal in June. The delay for radiation is that they wanted me to get my leakage under control. I ride a bike about 15 to 40 miles at a time and just got done with a two day ride. I have concerns about going backwards with bladder control and I am fighting fatigue with the hormon treatments.

[bitittle in reply to Dr_WHO]

The increase in urinary frequence they tell me is temporary during the radiation treatments. I have not lost any bladder control. I don't have any leakage. From my RP I occasionally have a dribble with a cough or sneeze. The radiation treatments have not caused any further bladder control. I am being treated by a top radiation oncologist at UCSF.

Good luck with your treatment!

Bill

[Hidden in reply to Dr_WHO]

Dr. Who, conventional wisdom says whatever incontinence you have going into RT, you lock in, so you may want to consider delaying RT until you have full or near full continence.

[Hidden]

Rock on Brother

[rnewman751]

Hi gentlemen, l had da Vinci prostatectomy 2/6/2014. Psa rose to .3 September 2015. 40 rounds of salvage radiation to total 70 gray. Original Psa at surgery was 3.95 Gleason 4+3,7. Margins clean. My experience and side effects were minimal from salvage radiation. Slight fatigue and hemorrhoid flare up with mild colorectal IBS. My psa dropped at the end of radiation in November to .14. I continued to test every 2 to 3 months there after; .08, .04, <.02 to present. So far last 4 months <.02 undetectable. I'm cautiously optomistic! I truly wish you all to have a similar outcome, best of luck! Rob.

[AlanMeyer]

Hello bitittle,

It sounds like you're a guy with a great attitude and a strong body. I think your continuing exercise is an excellent idea.

It is my understanding that radiation inflames the tissues around the urethra causing them to swell and clamp the urethra, making it difficult to push the urine out. As a result, during and for a while after radiation, we have trouble fully emptying the bladder, causing us to need to go more often.

In your case, because you have no prostate anymore, I presume there is less tissue crowding around the urethra, and the urinary urgency will probably never get as bad as it does for guys like me who had radiation as a primary treatment. At its worst, I was up each hour, about 7 times each night, and was constantly going to the bathroom when at work. But everything calmed down after a few months.

Here are a couple of things that might help.

1. Keep a jar with a tight fitting lid beside the bed. When you have to urinate, you can sit up, do it, close the lid, and go right back to bed. It may be less disruptive to your sleep.

2. If things get bad you can ask the doctor for a prescription drug like Flomax, that loosens things up and makes it easier to empty the bladder.

I would avoid Flomax if you don't need it. It can lower blood pressure, which could make you dizzy if your blood pressure is already low. I found I couldn't urinate at all without it, but I'm thinking you'll be okay without it.

I wish you the best of luck with your treatment.

Alan

[Atlas55]

Good attitude it will guide you through.

10 years out 3 time recurrence from rising PSA done it all. Good luck "Brother"

[Dr_WHO]

Thanks for the note. It is a shame that there is not a lot of information on ductal prostate cancer. They are treating it as "normal" advanced cancer. Based on what I have read I have changed my diet, no red meat, dairy or soy or processed foods. I am taking 15 grams/day of modified citrus pectin and 650 grams of curcuminoid. I would be interested to know what you are trying.

Here are my values I was 58when diagnosed and had DaVinci surgery in April of 2016. Gleason 8 (4+4) T3aN1 ductal Stage 4 D1 (localized) with one lymth node "100% cancer". In May a follow up bone and CT scan was negative. The good news for me is that 60 days out My PSA was <0.1. Sorry that this was not the case for you.

I started hormonal treatment in June (Lupron). The radiologist stated that I should wait until I get better bladder control, but that I should not wait more than four months after the operation to start. While I am not 100% there with leakage I will start radiation in August. I guess I can live with about 10 grams a day leakage if it means that they can tap the cancer down.

Please let me know how you are doing. I will be pulling for you.

[Desanthony]

Although my prostate cancer is not as bad as yours I am very interested in this. My Grandfather used to swear by bicarb and molasses and lemon juice and that is many years ago during the 1950's. He died in 1966 and was a self taught physio who had a wonderful reputation - written up in national newspapers. Many believed he was a "healer" and had healing hands. Good to know there was something in this and I will follow your progress with great interest and may try some of this myself. I am 72 last PSA WAS 12.9 (before starting hormone treatment). Gleason score of 7 3+4, biopsy 4/5 from right side of prostate showed cancer 0/5 on left side. A bulge in the prostate shows it may be starting to "move" but two Doc's have confirmed that it is still contained within the capsule. Started hormone treatment 7 July. See rad.onc on Wednesday to discuss IMRT. Have been told I cannot have proton beam therapy as I have a prosthetic hip. Urologist advised against prostatectomy due to problems I already have with overactive bladder and history of anal fistula. I feel I need a more precise form of treatment than IMRT so am asking for referral to national centre that offers cyber knife. Have had 3 month prostap injection and just waiting to sort out if I have other options before choosing what to do when PSA level is down and treatment can begin.

Des

[Hidden in reply to Desanthony]

Have you heard of 'calyspso' as part of IMRT? They implant 3 targeting devices in the prostate to provide guidance for the IMRT. Or was that already factored into your IMRT assessment?

[Dr_WHO]

Thanks for the information. Will include some of your suggestions. Please take care.

[Hidden]

nalakrats, you say

"Vitamin D3, which is in Phase 2 testing at MD Anderson"

do you know the trial number or what outcome they are looking for?? Roswell did a test upto 10,000IU/day, but did not post any results, and I could not understand what they were hoping to see. I am D3 fan, of Bruce Hollis's.